Still Pain

Keeping on keeping on, despite everything

Tue, 13 May 2025 00:00:00 +0200

It’s been a few years since I last updated here. And more still since I was writing about my health and operations. The last several years have been quite a struggle to get through in all ways - mentally, physically, emotionally.

I do intend to write a few posts but I’ll backdate them to when I had those operations, or when those situations happened.

In the meantime, here’s a status update for any who are still following this blog. It’s not the most fun read though.

Ill health and fighting with doctors

Too young for menopause

I had had already 6 operations for endometriosis and adenomyosis, including a partial hysterectomy. I still bled every month from my butt, and had all the awful monthly cramps and migraines. Plus the worsening breast inflammation (cystic mastopathy) from the monthly hormone cycle.

I wanted my ovaries out.

Two gynaecologists, including the hospital that did my hyster, said that at age 47, I “was too young for menopause”. They didn’t give the pain, anaemia from the bleeding, and the organ destruction the endo was causing any weight in their decision. Just that my osteoporosis might appear a few years sooner than if left on a natural timeline.

A new endo center had opened at the hospital that manages my arthritis and monitors my breast cancer. I had a long appointment with the department head, and after consulting with the breast cancer center across the hall, they agreed to let me have an oophorectomy in 2023 - the seventh and final operation for the endo.

They found more endo on the ovaries which had stuck them down against the pelvic wall with the ureters and kidneys. The pouch of douglas was inaccessible with endo lesions, and there were extensive adhesions throughout the pelvis, pulling in every direction - no wonder I was in so much pain.

The immediate switch to a menopause body has been a roller coaster. While there is less pelvic pain, the new hot flushes, increased migraines, and decreased concentration are ongoing issues.

The nasal infection

It took 5 years for an infection in my nose - originally caused by extensive black mold exposure - to be taken seriously, despite it bleeding every day.

By that point, it was into the cartilage and heading for the brain. Various ENTs had ridiculously dismissed the infection as acne (WTF?), allergies, problems with the nose piercing (although that was on the other side, far from the infection!), and acid reflux.

If I were not in Germany, I would have considered suing for malpractice.

Finally I found one who matter-of-factly said the problem was purely mechanical and an easy fix. An operation in 2024 fixed the deviated septum, stopped the air drying out the mucosal lining of the septum, and allowed the skin to grow back over the cartilage. It was a nasty operation, a long recovery, but it has finally healed.

Painful inflammation and a broken health system

My arthritis is auto-immune. That means immune suppressant injections are necessary to try to tone down the inflammation response. But they can’t suppress all the inflammation - there is simply too much of it.

That means I’ve had to undergo many tests, across the medical disciplines, just in case it is cancer. For each test there is a 3-6 month wait.

Various tests have shown worsening inflammation everywhere:

neuralgias from inflamed nerve sheaths (feet)
bursitis (shoulders)
torn menisci (knees)
tenosynovitis (hands, wrists, fingers, feet)
tendonitis (jaw, neck, ankles, knees, spine)
costochondritis (chest wall/ribs)
mastitis and cystic mastopathy (the non-cancerous breast)
blepharitis (tear ducts) and sinusitis (nose)
periodontitis (gums and mouth)
esophagitis, gastritis, duodenitis, bowel inflammation (throat, stomach, bowel - the entire digestive system from mouth to out)

None of these are bad enough individually to be considered disabling by the bureaucracy.

But all that inflammation is truly disabling in a single body, both in terms of physical function, and in level of pain.

Unfortunately, a range of doctors and therapists ignore all of these tests and say it’s my fault for being obese. Or I’m imagining the pain, that it’s ‘just’ fibromyalgia and I should relax and de-stress.

Inflammation is not a symptom of fibromyalgia. Obesity does not cause autoimmune inflammation.

Kidney disease but no nephrologists

As the kidney blood tests are consistently worsening, other types of anti-inflammatory medications are forbidden. The failing kidneys are causing problems for my heart and blood pressure - failing kidneys spike blood pressure, which in turn causes the kidneys to fail faster.

Thankfully, Jardiance (empaglifozin), a medication used off-label for non-diabetics to support poor kidney function, has been a huge help in getting BP back to normal levels. It hasn’t done anything to resolve the complex cyst that is eating one of the poor kidneys from the inside though.

As I am not an ‘acute’ kidney failure, not a single nephrologist in or around this city will allow an appointment. The cyst is monitored every few years by a urologist.

This health system is so broken.

Anaemia but no haematologists

I had nearly hit zero on the iron blood test and had a very low red blood cell count when they finally ran some extra tests. They looked for why I was so exhausted and why my arms and legs were numb - iron and folate anaemia.

The doctors are still not sure why - theories were endometriosis, then the constant nose bleeds, then gastritis, plus complications from the kidneys. Gastritis means you don’t properly absorb the iron you eat.

But as all the haematologists in the region refuse new patients, and other doctors refuse to administer iron infusions, I’m stuck with eating iron and suffering the stomach aches and worsened gastritis caused by the tablets.

Work, energy and a changing industry

Along with the every-day tasks of living - bathing, getting clothed, toileting, visiting doctors, getting tests done, dealing with bureaucracy, eating, sleeping - work has had to be my number one task for brain energy.

With massive constant headaches, vision disturbances, the nose operation, and generally higher pain levels with even less pain relief, concentrating enough to write something coherent and interesting has been nigh impossible.

But, I am still writing almost weekly blog posts for draw.io and help for the online diagram editor. And I edit the occasional PhD and Masters thesis for students who want to do well.

Unfortunately, all the other writing, editing, and translation clients I had had through Upwork and privately have run off with content generators. It’s cheaper and faster to use ChatGPT, Grammarly and Deepl than to pay someone to write something accurate and useful.

ChatGPT is a terrible way to write anything important.

The problems with AI-generated content

In the last master’s thesis I edited, ChatGPT made up 100% of the references. It cited articles that did not exist, fictitious medical journals, non-existent volumes to existing journals, and made up all kinds of ‘facts’. Reference checking took days, plus more to locate real research that could be cited instead.

In the body of the thesis were sentences that explicitly mentioned the content was generated - telling the user in this section they ‘could write about issues A, B and C’. It was an absolute mess. I hope her supervisor never saw those drafts.

Theses and postgraduate publications are (still) meant to be your own work. AI-generated content is, in essence, pure plagiarism.

Human editors and human translators still do a much better job - humans are more accurate, humans can fact-check, humans understand how to relate topics to each other, and humans can translate nuanced language so that the meaning is correct.

AI tools simply pattern match and mash together what has a high probability of being related. There is nothing creative or original at all, and that’s before you get to the myriad of other jaw-dropping problems, not the least, the IP and copyright theft, and the environmental disaster that is inherent in all of these content generation tools.

I am utterly demoralised.

Both at the tools and the companies who created them and stole all the training data, and the people (the majority?) who love and use them.

Rising depression

I want to change industries into something that isn’t overrun by AI.

But, my ill health is a very physical barrier to moving into a more creative, craft-focused work life, let alone all the other problems that comes with low-paid artists, although this is the direction I would love to take.

It’s all too overwhelming.

The frustration, the worry about income, the desperate wish to protect my livelihood, the disgust for AI generation and how it is all based on theft and laziness. The despair at the state of the world - the wars, atrocities, politicians, policies, hate, bigotry, abuse, unfairness. Some really nasty family turmoil that has deeply hurt and reopened past trauma wounds. And of course, the chronic ill health and ridiculous pain levels that doctors never take seriously, and the broken health system.

In the past, I used to tell therapists that while I had severe cPTSD from my childhood, I wasn’t depressed.

Right now though, I am most definitely and deeply, clinically depressed.

But, as we all do, I have to keep on keeping on.

Too many appointments - recovery time needed

Wed, 18 Jan 2023 00:00:00 +0100

December was busy towards the end. Four full days of socialising - more than is normal in half a year, all packed into a week. It could have been more, but I begged some down time.

It was a good idea - and necessary - to take complete time off during this period to recover. As a result of resting, I came up with a mountain of content ideas for both work and Patreon as the year ticked over.

But … fate had other ideas.

January. 11 medical appointments in 15 work days. In six different medical specialities. For mostly unrelated problems. And it’s not even the end of the month.

Each appointment knocked out at least half a day with travel and waiting time. One of those was meant to be an easy and tiny laser treatment for a venous lake/angioma on my lip. It was unexpectedly and spectacularly messy, needing urgent stitches will take much longer to recover.

Add to that, it’s that time of month when hormones torture me with endometriosis pain and constant migraines.

It’s frustrating that digital referrals and results by phone or email would have more than halved the number of those appointments.

I’m utterly exhausted.

Upcoming procedures and tests

Having a collection of somewhat related chronic illnesses means, at the minimum, I lose several attending tests and waiting for doctors each month. It’s been extreme recently.

This year by day 18, my eyes have new prescription glasses, liver test results were discussed, and the quarterly rheumatology circus to access my medication has been performed.

Now, I’m to chase down new kidney problems with the local hospital, discuss another (likely) endometriosis laparoscopy with the surgeon in Berlin, find a new trauma psychotherapist as my current has a limit of two therapy courses per patient, and arrange a second ENT opinion for the bloody sinusitis I’ve had since 2019. I’m going to leave the pulmonology until I see the endometriosis surgeon as I suspect the breathing problems stem from endo on the diaphragm.

Medical burnout is an intractable problem.

With just the diagnostics eating so much time month, I can’t afford - neither time, nor energy, nor financially - to attend therapies that would help with the rheumatism, neuropathy and the ongoing lymph problems from the DIEP (physiotherapy, lymph drainage, pain clinic).

Scheduling recovery days

Care is my most important focus word for this year.

It has many meanings, and encompasses all of them - care for others; careful planning and spending of money, attention, and energy; care taken to produce good work; self-care; …

As I noted in my Patreon post on my focus words for 2023, I plan to schedule recovery days after any period that drains my energy.

Right now, a rest fortnight sounds most appropriate.

But, I can afford a day or two off work. That’s more than I have allowed myself in the past.

Creative projects to distract and recover

Restful, gentle, creative projects are my lifeline.

Knitting and crochet can be done curled up on the couch with the cats.
Weaving is excellent for a bit more movement and to calm a scattered or overactive mind. Best done standing though, with my loom setup.
Spinning is the best for seated zoning out and draining the lower lymph - ideal before bed.
Painting and sketching can be done at my desk, and occasionally on the couch (not ink splodge paintings though), and are both a good warm up to thinking work.

Want to show some support?

If you’re interested in following my creative projects as they progress, or the productive balcony garden which is currently dormant for winter, I share regular updates, photos and videos with my patrons.

Occasional photos are posted on Instagram and Mastodon, and original art and yarn projects are available for purchase from my Ko-fi shop.

I also share a little of these projects in monthly slow vlogs and occasional shorts on YouTube - please subscribe to my channel and like the videos if you want to see more.

Site migration

Tue, 22 Nov 2022 00:00:00 +0100

It’s been a long time coming, but I’ve finally gotten around to migrating this blog to a static Jekyll site with a clean and minimal theme.

It has meant a lot of tweaking on the back end, reinstalling Ruby, updating gems and the development environment, and rewriting/relinking content.

I haven’t gotten around to uploading/updating images yet, or fixing all the broken links.

For this and if you find anything else is broken, please have patience - I’ll be fixing things as my energy allows.

Why leave Wordpress?

Because …

the Wordpress image/media library constantly forgets that I’ve uploaded images and loses the files.
there is little control over cookies (and thus is a GDPR risk).
the analytics in Wordpress may or may not also violate the GDPR.
I want to author on my local machine, not over an internet connection.
the stability of externally hosted databases are not guaranteed.
it’s easier to backup text in a Jekyll site on my local computer.
Jekyll is open source software, and I like that.
it’s faster to write in Markdown than in the Wordpress editor.
it can be read more easily with screen readers - more accessible.
the pages look better in Safari’s reader.

The world lost that trial

Mon, 13 Jun 2022 00:00:00 +0200

My past is still a source of pain, both physical and mental. cPTSD is a difficult beast to live with, and it will never truly go away. Occasionally, things happen out in the world that are triggering.

The Depp/Heard trial, and more so, the social saturation, the reactions of people I know, the overwhelming toxicity that surrounded it.

Everyone, everywhere lost this trial. But especially those of us who are survivors and victims.

This is an attempt to put into words my thoughts, feelings – anger, sadness, disgust – and to find a way to deal with a world that feels much less safe.

Content Warning: This post contains discussions and descriptions of abuse, and the impact of this trial on survivors.

Victims can abuse.

Abuse of any kind is inexcusable.

Domestic violence is never justified.

Substance addiction does not excuse anything.

These are choices. It’s always a choice.

Nothing, no one, is ever black and white. Guilt versus innocence is not a dichotomy. Each person has their own sliding scale. No person is perfect.

Both are victims. Both are abusers. Both of these statements are true. One does not negate, invalidate or even minimise the other.

Legal processes, as in this trial, can be used to continue, widen, deepen and intensify such abuse. Winner takes all, the loser is destroyed. This is inhumane and abusive.

A jury is not trained to recognise the DARVO defence used by abusers. Juries are neither qualified nor experienced in how abusers deny and reverse victim/offender.

All domestic abuse trials should never be public, especially with famous people in this age of hateful, unfiltered, and oft misogynistic social media.

The media coverage is deeply biased. That bias can appear either way, but is skewed to the one who has more fame.

But the social media memes and streamer commentaries are toxic, and overwhelmingly one-sided.

This trial continued the abuse, widened, deepened and intensified it, perpetrated by the one who had the more powerful, the larger fan base. The other was destroyed.

Yet, both are abusers. And both are victims. One should not, must not be allowed to invalidate the other.

That a violent abuser and substance addict is now loudly and publicly celebrated for having ‘won’, that the abuse he perpetrated was ‘justified’ and ‘excused’, is sickening and scary.

The damage to #MeToo is chilling. These victims don’t disappear, although they appear to – now even more hesitant to speak up. The abuse they have suffered and continued to suffer today does not stop.

Worse, the celebration of a violent abuser empowers abusers.

Personally, I feel much less safe. Much less accepted, believed, supported. Both in the world, and in various friend circles.

Everyone, everywhere lost this trial.

On how this affects survivors

Survivors can’t help but centre themselves and their experiences. We will relive similar moments, of the abuse, the fear, the self-loathing, the doubt. Also of how people around us did not support us, did not believe us, did not help. Or when those people actively supported the abuser instead.

I’ve caught myself thinking oft on what the police and lawyers said – that I would never win.

That was despite my father’s admission of the 14 years of daily abuse to psychologists and in family group therapy.

They said a trial would destroy me.

They had my long-term mental health in mind when they counselled not to litigate. They described in great detail how the abuser’s defence would claim that “it was excused by my father’s childhood”, that “alcohol abuse excused it”, that I must have done something to “ask for or encourage it”.

As a 0-14 year old child!

But it was a different time. Abusers were rarely convicted. Victims were so rarely believed. I was “just a child” and this was long, long before #MeToo.

I had hoped it had changed in the last 30+ years. Especially as more high-profile abusers are being convicted. Victims are speaking up.

I had thought that society as a whole had become better – believing and supporting victims.

But the toxicity in the media and especially on social media surrounding this trial, the sheer number and loudness of the apologists for such abusive behaviour, and those who justified and defended the abuse (in either direction) …

I just can’t …

These thoughts continue to rattle. Pain, fear, sadness and anger have caught my breath. In writing and publishing this, I hope to start processing it.

To look after my mental health, I choose to pull back. To put up walls. To leave mainstream social media. To reduce and cut contact with people, friends, and communities who have celebrated this as a win.

Everyone lost.

Tapering off gabapentin

Fri, 22 Apr 2022 00:00:00 +0200

After nearly 30 years, I’m tapering off gabapentin. These days, many causes of my pain are more specifically treated by other medications. Gabapentin likely contributes to weight, dizziness and high blood pressure. So my GP and I think it would be better for me to stop taking it.

In my painful teens and early twenties, the doctors and specialists decided I had fibromyalgia. They tried me on a number of medications: antidepressants (made the pain worse), Lyrica (no effect), and gabapentin.

Gabapentin did a reasonable job of turning down the volume on the various pains. But it did nothing to treat the underlying causes.

Unfortunately, this was when the doctors gave up looking for a reason (just as they stuffed around for years over my endometriosis and adenomyosis pain.

Treat the cause of the pain

After a hysterectomy eliminated the adenomyosis pain, I felt up to chasing down the root cause of my autoimmune/inflammatory condition.

Fibromyalgia is not inflammation. If you have inflammation, you likely have another condition that is triggering the fibromyalgia.

In my case, it’s a form of spondyloarthritis, which runs in one side of my family. My tendons and mucous membranes (eyes, mouth, throat, lungs, bowel, …) like to get inflamed. After some trial and error tests of medications, I found I reacted really well to adalimumab (Humira). It’s keeping the tendon/joint inflammation mostly under control, and has greatly reduced my pain levels.

Novamin sulfon has been wondrous for treating my hormonal migraines, if I catch them early enough.

With a slippy spinal column, fat necrosis in my chest from the breast cancer op, and endometriosis in my bowel, I’ll never be pain-free. But I’m probably at the lowest pain level I’ve been for decades.

It’s time to get off gabapentin

In the last few years, gabapentin has become quite the street drug, as it heightens the effects of opioid painkillers, and provides a dizzying numbness that many find appealing. With more data and conversations on the internet now, the horror stories of stopping gabapentin cold in rehab clinics had me quite worried.

My dose was never that high - 900mg per day, taken once a day to help me get and stay asleep through the pain. But I’ve been on that for nearly 30 years.

Having tapered off Effexor - a nightmare process - and off prednisolone a few times, I knew this taper would need to be slow, and would likely still be rough.

Gabapentin alternate-day taper

Decreasing by about 100mg every 1.5 months.

1 is the lower dose, and 2 is the higher dose - using an alternate-day taper, like I did with prednisolone.

Week one - decreased dose followed by two days of the original higher dose. 1 2 2 1 2 2 2
Week two - decreased dose followed by one day of the original higher dose. 1 2 1 2 1 2 1 2
Week three - decreased dose for two days in a row, then the original dose for two days, then the decreased dose for two days. 1 1 2 1 1 2 1
Week four - two days at the decreased dose, one day at the original dose, then four days at the decreased dose. 1 1 2 1 1 1 1
Week five and six - decreased dose only

Gabapentin withdrawal symptoms when tapering

Each step down brought increased pain levels, headaches, altered sleep schedules (waking up too early, or multiple times during the night), and extreme leg pain at night.

Magnesium supplements (for cramps) help a little with the leg pain, which was always worst a few days before my arthritis injection.

I made sure not to decrease the gabapentin dose again until each taper wave of symptoms had passed, and my sleep and pain levels stabilised.

400mg was a longer plateau, and needed about a month to stabilise, but I’m moving down again now, currently in week two of the alternate day taper to 300mg.

From the forums and medical journals I’ve read in the past, it can take anywhere from 2-14 days to get past withdrawal symptoms. I’m definitely on the longer side, but then I have multiple other conditions and dodgy kidneys which clear substances slowly.

When I forget a dose

I normally take it at 10am. If I forget, I’ll wake up between 2-4am, physically buzzing (literally vibrating), anxious to the point of panic, and unable to get back to sleep. I have no idea how I could push past that and function to stop cold turkey - thus the slow taper.

Distraction is good

As part of the taper, I decided to work on some new projects. In fact, nine projects in nine different categories. I’m doing well with the yarn, sewing, gardening and reading categories, but not making progress on some of the harder ones, like losing weight. I hope it will get easier once I’ve finished this taper.

You can follow my progress on these projects in my Patreon newsletters, or sign up for more detailed updates on each category.

Snapshots do appear on my Instagram account around many cat, art and garden photos.
With the aim of learning a little more about video and audio editing, I’ve also been recording a second a day, and publishing vlogs on YouTube

I’m finding these distractions very helpful in not dwelling on the difficulties of the taper. Feel free to join and follow, should you be interested.

Adenomyosis is not endometriosis

Tue, 10 Aug 2021 00:00:00 +0200

Adenomyosis is very similar to endometriosis, in that it is the growth of the endometrium (uterine lining) where it should not be. Endometriosis grows on the surfaces in the pelvic region, and adenomyosis grows inside the muscle wall of the uterus. The endometrial tissue in both cases follows the menstrual cycle exactly as it does inside the uterus and bleeds during menstruation.

Important! If you ignore endometriosis it may develop into adenomyosis, which is much more difficult to treat.

Adenomyosis is a relatively uncommon condition. Although my surgeons say pre-menopausal women about the age of 40 suffer from it, they also say a huge number of cases are undiagnosed. Many menstruating women of all ages are simply putting up with the pain, heavy periods and infertility adenomyosis causes.

What happens when you have adenomyosis?

Adenomyomas (clumps of endometrial cells inside the wall of the uterus) bleed, creating pockets of blood, very much like the swelling and bad bruise that appears after a sprain. Because this pool of blood is inside the muscle, the muscle fibres can’t respond and contract properly to control the menstrual flow. This results in very heavy period bleeding with many large blood clots.

My surgeon once described this muscle reaction as “like trying to spit through a mouthful of marbles” - you’ll lose a lot more fluid than if you could simply spit without the marbles.

This tissue doesn’t start bleeding a couple of days in advance of a period like endometriosis does, but the pools of blood inside the uterus wall in the adnomyomas cause increasingly more pain towards the end of the menstrual cycle.

Adenomyosis can cause infertility and more often miscarriages, as it is a growth inside the walls that disrupts the tissue supporting the growing fetus.

What causes it?

As with most of the pelvic diseases, there are no known causes. Unfortunately, not much research has been done as it mostly affects older women, and is usually fully removed with a hysterectomy. Less is known about adenomyosis than endometriosis, although the two seem to be related.

Adenomyosis often occurs alongside other diseases, most commonly with endometriosis and irritable bowel syndrome (IBS). Fibroids, cysts, and other pelvic diseases are common co-morbidities.

How do you detect adenomyosis?

For endometriosis, fibroid and adenomyosis patients, the gold standard is a biopsy, followed by internal ultrasounds and MRIs to diagnose the presence and extent of the abnormal endometrial and fibroid growths.

It’s likely that you will be diagnosed with adenomyosis when everything else is ruled out.

Biopsy during laparoscopy or after hysterectomy

The most reliable detection of ademonyosis is with a biopsy of the removed uterus after a hysterectomy. The surgeons and pathologists can take their time and thoroughly test all areas of the muscle.

Experienced surgeons may take punch biopsies of the uterus wall wherever it looks boggy, swollen, lumpy and not smooth. This is commonly done at the same time as a laparoscopy to identify and remove endometriosis lesions, fibroids or cysts.

Imaging for adenomyosis

One other diagnosis method that has a decent chance of success of detecting the abnormal tissue inside the uterine wall is an MRI. Unfortunately, most health insurers around the world won’t cover this test for suspected adenomyosis.

One other common method of initial diagnosis is using ultrasound to check the size of the uterus. The uterus may (or may not) ‘swell’ and enlarge with the scar tissue and blood inside the muscle wall. Often sufferers will talk about a ‘4 week size uterus’ - comparing the size of their enlarged uterus with the size of a pregnant woman’s uterus. If the adenomyosis is advanced, black areas that look like cysts may appear inside the muscle wall.

Ultrasound technology has been substantially improved with doppler readings to show blood flow. Adenomyomas have abnormal blood flow, and more advanced growths can be detected with this method. Trained radiologists should know what to look for.

Of course, you need to time these tests with your period. Once the period ends, the blood will be slowly reabsorbed into the body as a ‘waste product’.

CA125 blood test

The CA125 blood test is actually a cancer indicator that specialists sometimes use to detect endometriosis. Unfortunately, it is extremely unreliable. Inflamed or damaged ovaries, fallopian tubes, uterus, cervix and the lining of the abdominal cavities and chest all release Cancer Antigen 125.

For someone who has never had cancer, the average level is under 35. If you have cancer, the level would be at least 1500. With endometriosis, fibroid and adenomyosis, the CA125 level may be around 80, but is a very imprecise. More often, doctors will use this test to monitor endometriosis after diagnosis. The results may go up as the endometriosis grows, and down on removal.

Endometriosis, fibroids, pelvic infections, liver disease and adenomyosis can all raise CA125 levels. Too many false positive results means this test is not a useful indication of ovarian cancer. However, cancer patients can use it to monitor their CA125 levels while undergoing treatment and afterwards.

From personal experience, the CA125 test misses positive cases too. I had severe adenomyosis throughout the entirety of the uterine muscle, but my CA-125 levels were essentially normal

CA125 controversy

Unfortunately, a chain-email encourages women to insist on a yearly CA125 test as an early detection method for ovarian cancer. This test is terribly unreliable, with results differing from patient to patient. CA125 can not definitively indicate the presence or absence of cancer. Snopes.com discusses the chain-email in detail, with comments from cancer centres and doctors.

How do you treat adenomyosis?

The preferred method of treatment for older women is a partial or full hysterectomy. This removes 100% of the adenomyosis growths, and will have an immediate pain relieving effect. Of course, there are risks with hysterectomies - infections, nerve damage, prolapsed bladder, bowel problems. Consider these before you make a decision.

If you don’t have endometriosis, a partial hysterectomy or endometrial ablation may fully get rid of the disease and the symptoms. As it doesn’t remove the ovaries, you will not experience the hormonal change to menopause.

A hysterectomy is a big operation. Make sure you plan your recovery - you may need to take it easy for quite some time, especially if you have other chronic illnesses. I think it was a good six months after my partial laparoscopic hysterectomy before I felt fit enough for normal activity levels.

Treating endometriosis and adenomyosis together

If you have endometriosis as well, a partial hysterectomy will not provide full pain relief. The endometriosis will still bleed into the pelvic cavity every cycle, triggered by the hormones released by the ovaries. Even if you have a laparoscopy to remove the endometriosis lesions, they will likely regrow. A full hysterectomy may provide more relief, as this puts the body into menopause.

There are downsides to doing this too early though - especially the bone loss leading to osteoporosis. You can use hormone replacement therapy (HRT) to mask the nastier effects of menopause that some women can experience. Unfortunately, HRT contains oestrogen which will continue to feed the endometriosis growths inside the pelvis.

If you are close to menopause when adenomyosis is finally diagnosed, you may find a hysterectomy to be your best option. If you have developed adenomyosis at a much younger age, the choice of treatments is far from ideal.

Treatments in younger women

To put off more drastic methods, you can stop the bleeding with the Mirena intra-uterine device (IUD), or the Visanne progestin tablet. Both methods are reversible at any time.

A trial of Mirena on adenomyosis sufferers found that it decreased the severity and in some cases removed the symptoms entirely. It does not treat the adenomyomas (growths) at all, but delivers a low dose of progesterone directly into the uterus lining, slowing and sometimes stopping the growth of the lining (and thus periods). It seems to be more effective than the continuous pill as there seem to be much fewer side effects.

Gynecologists should replace the Mirena IUD every 4-5 years as the amount of hormones released into the uterus decreases over time. The implant procedure is definitely not painless - I would personally recommend using an anaesthetic.

Using endometriosis medications such as continuous high progesterone birth control (BCP), or the newer medication Visanne (progestin), may control the growth rate of the adenomyomas and the pain by avoiding periods. Although, Visanne may have some nasty side-effects.

Even if you have a Mirena IUD, if you also have endometriosis, many doctors will recommend you stay on a very low dose pill or Visanne in addition to stop the action of the ovaries.

Gentle persistence is the key to everything

Tue, 03 Aug 2021 00:00:00 +0200

For many years, I’ve set a yearly intention in a word or phrase. In the last few years, I’ve seen the most positive progress in almost all aspects of my life. Gentle persistence has become my personal mantra, and I don’t think I will change it in the years to come.

Almost everything in life needs you to be persistent. Learning to walk, to talk, to cook. Passing school and university, making friends, holding down a job and earning a reliable income. Growing a garden, a business, or a family. Recovering after an illness or operation. Maintaining your fitness and health. And of course, coming to terms with and living with chronic illness and pain.

Some people can go all out, diving energetically into life, their studies and their jobs. They expend a lot of energy and make great strides forward fast.

Those of use who have chronic conditions or illnesses can’t expend such large amounts of energy at work, at home or in creative pursuits. We need to be more gentle with ourselves, pace our efforts and rest when needed.

Even those who do have great energy and health, if they don’t persist in applying effort, they will lose their forward momentum and results.

Slow and steady?

I’ve written in the past about how slow and steady work gets results, and listed many things that fit into 20 minute blocks, as inspired by Michael Nobbs at Go Gently.

But those words, “slow and steady,” didn’t feel quite right. Maybe because I don’t see myself as a steady person?

A number of friends have remarked over the years that I was very persistent. Some in a positive way, some quite negative. Persistence is definitely a core element of my personality. But only after the cancer operation, and a very toxic work situation, did I realise I needed to be gentler with myself.

Thus, “gentle persistence” came together.

Operation recovery needs gentle persistence

It took a good six months after my hysterectomy until I felt reasonable. Many people recover in a much shorter time. Whether it was due to my other chronic illnesses, or returning to a stressful job too soon after the operation, I’ll never find out.

But I do know that each operation takes longer to recover from than the previous.

Operation number 7, the huge DIEP breast cancer mastectomy and transplant, took much longer, and was more painful than any that came before. I decided to take the full month off, and take it as easy as I could afterwards. I’ve written about the DIEP operation and my recovery after 1.5 years in earlier posts. It’s now nearly 4 years, and I still struggle at times. My breathing has never fully recovered - not moving much for many months decimates lung capacity. That’s a scary spot to be, in these COVID times.

Gentle improvements

Now that I’ve moved and have access to a good rheumatologist, I’m back on the arthritis medication that works, and movement is much easier. The reduced pain means I can focus for longer periods, which means I have to pace less and take fewer, shorter rests to get my work done.

Post vaccine and antibody-testing, my aim is to gently and persistently gain back fitness. Slowly get moving, get outside more, get flexible and get to a healthy weight.

Gentle persistence is the key to learning anything

Learning a music instrument, a language, a new skill, a craft - everything needs persistence. Putting in the brush or pencil miles, spending 10,000 hours to master anything, this topic has been covered by writers and artists of all stripes when explaining how they learnt their craft.

You need to be gentle enough with yourself to realise when you’ve hit a temporary rough patch. If you persist, without pushing too hard, you’ll find a way past it.

If you push, push push, you are likely to end up hating whatever you are learning and drop it.

That would explain the number of music or language or university students, chess or sports prodigies who simply give up - either they themselves, their parents or coaches pushed too far, too fast. Had they been gentler …

Gentle does not mean lazy.

Take a break, switch to something else for a while, rest - these are healthy and gentle reactions. They are very necessary when you hit a rough patch in your studies, your work or even relationships.

Gentle persistence is needed in hobbies too.

I burnt out a bit on crochet after finishing a few big blanket projects. Now that I have learnt how to knit, and made some socks, and spend some time on hand sewing projects, I’m ready to dip back into some more crochet.

Building a freelance business takes persistence

Setting you own hours and working from home, choosing the clients and projects to work with - sounds great, doesn’t it? But a freelance business is remarkably difficult to build and sustain.

If you go all out, apply for piles of projects and have too much work to do, it’ll be all work, all the time. Your quality will suffer, you’ll miss deadlines, your clients will be unhappy, and you will burn out quickly.

Starting slowly, increasing clients gradually, learning which projects or areas are best suited for your skills is a much better way to go. You gently and persistently increase your portfolio and experience, your network of clients and your rates, while keeping everyone happy (and healthy).

Constant hustle is not healthy.

Intense focus purely on work at all times will push people (clients, co-workers, friends and family) away. You’ll put your health and hobbies off. And when you inevitably burn out, your network of support and recovery options may have some rather large holes.

You need to make sure you have some outlet for your interests and people outside your work.

Be gentle enough on yourself to recognise when you need a break, when you need to do something other than work or spend time elsewhere. Be persistent in sticking to reasonable hours, sensible project requirements, and work/home/health boundaries.

Gently and persistently publishing English resources

When I started teaching conversation classes in Germany 10 (!) years ago now, there were no easy-to-access resources apart from textbooks. These did not adapt well to conversation classes. I did not want the resources I created during the many years I’ve been teaching to go to waste, so I started publishing them on Patreon.

With gentle persistence over two years, I’ve now published a huge library on Patreon: puzzles, conversation prompts, lesson plans, cheat sheets and more. Both English language teachers and students can use these resources to teach or self-study. I’ve also published a wide variety of tips, from VAT tax, GDPR and freelancing in Germany, through to managing the new-to-teaching jitters, structuring a conversation course and setting up a stream with piano visualisations.

I’ve now morphed the Patreon to be more focused on my creative projects and learning in general (new skills, new crafts, new techniques, etc). But that library is still there, should anyone want some easy-to-use ESL resources.

Need some help with your projects or learning process?

If you need some gentle encouragement, companionship or accountability to persist in your learning, teaching or creative process, as any level of patron, you are most welcome to join me - I hold sporadic co-working sessions, especially for active patrons.

Sound interesting? I’d love for you to join me on Patreon!

Still in many ways

Wed, 15 Jan 2020 00:00:00 +0100

So… it’s been a while. A long while. A lot has happened, and not much has changed.

Still recovering from operations

The mastectomy and DIEP operation is still spitting stitches 2.5 years on. Every now and again, I get what looks to be a pimple, which then pushes out a tiny plastic thread. I’ve read on forums that it could be doing that for decades! So much for dissolvable stitches.

I still have the dead fat lumps in the transplanted breast. These aren’t going away any time soon, and were in fact shattered into pieces by a mammogram last year (not doing that again!) It’s almost time for my yearly freak-the-radiologist-out check-up. I’m secretly freaking out too, and will until I get the all-clear, like all cancer survivors.

Still new (and old) health problems

New investigations revealed no (new) hernias, but the pain/occasional bulge still could be one through an old laparoscopic incision from the endometriosis operations. Nothing concrete on any tests though. Still bleeding every month from my bowel. Very occasionally twice. So I haven’t made it to menopause yet. I am not strange for wishing it would hurry up and stop the hormonal ups and downs!

Skin is still awful, ever since I stopped the prednisolone at the end of 2016. Demodex? Rosacea? Acne? Fungal skin infection? All of the above? Who knows. The dermatologists say to wash my face with soap, as if I haven’t tried that.

I’m reacting to everything and nothing, avoiding people and video calls. It sucks. It’s really itchy, stings and peels every few days, and I haven’t found anything much that helps. The dermatologists don’t.

Still incompetent health professionals

Also gave up on the dentists here ever making a mouth guard that doesn’t kill me. Hard acrylic doesn’t have the spring necessary to stop locked jaw muscles, and causes mega injuries to lips. Soft silicone contains latex, mouth blisters and peels.

So, ordered from a company in the States - they made me the perfect night guard using the same soft-ish ProForm material as my old one. Best for my combination of bruxism and enthesitis-arthritis. Dreading telling the dentists they were useless (again), so I’m avoiding my yearly check-up.

Still not saying no, often or loud enough

Last year, I burnt out from putting up with a toxic work environment for far too long. Which only got worse as soon as I handed in my 3 months’ (!) notice. Thankfully (sadly?) because I hadn’t had the chance to take any of my annual leave and had accrued a crazy amount of overtime, I was able to ‘go on holiday’ before I completely broke.

It’s taking a long time to recover, as anyone who has experienced burnout knows.

Still working

I’m slowly taking on new clients, small translation and editing tasks, and taking each day, each week as it comes. I’ve definitely enjoyed getting back into academic writing through proofreading masters and PhD theses!

But, I certainly have not enjoyed registering as a freelancer in Germany - the bureaucracy here has no understanding of what a writer/translator does. Veterinarians, lawyers, accountants and a few other odd professions can be freelancers, but not writers or translators or photographers or language teachers (they don’t fit neatly in any of the rather odd buckets). I still haven’t got through all that red tape yet - I’m looking at you, retirement system - and the monthly tax reporting truly sucks.

Still teaching

I started my Patreon and am having a blast releasing English teaching resources and connecting with other language teachers. I’ve published an in-depth VAT guide for freelancers in Germany there, partly to get my understanding straight, and also to pay it forward to any patrons who are also starting to freelance here.

This has more recently morphed to share my learning process as I pick up new skills and hobbies by the handful. If you like art, yarn crafts, music, videos, gardening or more, feel free to support me on Patreon for access to exclusive content.

Still learning

I’m slowly working through purchased courses and ebooks without spending much on new ones (although, today, I allowed myself to purchase one more course). I completed my first Inktober I’m picking up and running with new hobbies - knitting and painting - and already have two pairs of (oversized) socks. I’m hanging art on my walls.

Still finishing

During creativity sessions with friends last summer, I felt distinctly drawn to finishing my mountain of unfinished projects. This has had the side benefit of being able to begin a few new things in the space finishing left behind.

With a focus on finishing, I can avoid never-ending projects like ‘weight loss’ and ‘fitness’, and not beat myself up about it too much. I walk and exercise when I can. My weight jumps and loses 2kg every two weeks (thank you, hormones), but is otherwise stable. I am letting my new scales track it without me noticing.

Still too many medical appointments and therapies

Speaking of tracking … a high blood pressure crisis has put me on medication. Don’t ignore nasty, ongoing headaches, especially ones that give you pulsatile tinnitus and blurry vision.

The doctor scared me with ‘what might have been’ had I not turned up there when I did. 180/130 is a bad blood pressure. I have some new tech that tracks that for me too, but I’m having a devil of a time finding the right dose to stabilise in a reasonable range.

With regular lymph drainage/massage and physiotherapy, the worst of the arthritis has been mostly kept at bay. Every now and again, a tendon in my foot, knee or hand inflames and gets impossible to deal with for a few days. Increasingly, the bursa in big joints are starting to get involved, but physio still helps for now. If (when) we move, I want to take stock and set up an exercise area, maybe with some equipment.

And more heat packs, and more warm socks - I’m so cold, all of the time!

Still struggling with PTSD

Mentally, I’m completely beat. Complex PTSD has reared its nasty head, both childhood memories, and from the 2009 fires in Victoria, Australia.

I feel like I’m right there in Gippsland. Only, I’m not jumping out of my skin every time I hear a siren, because the sirens are all on the other side of the world. It’s awfully stressful and impossible to focus when you are trying to check all the sites, all the social platforms for news (especially around Omeo).

Still going

So… Still managing. Still dealing with old and new health stuff. Still keeping on keeping on. Still dealing with lots of pain. But I’m also finding enjoyment, quiet, and stillness where I can.

1.5 years post DIEP

Sat, 26 Jan 2019 00:00:00 +0100

It’s been ages since I’ve posted - I’m still alive and kicking.

It’s sad how when you have to write for your main day job, your ‘hobby’ of writing falls by the wayside. Especially when you have to conserve your energy as you battle chronic illnesses and recover from such a massive cancer operation.

DIEP recovery is slow - you need patience and help

I had one spot in the middle of my tummy cut that had the local doctors worried for a month or so - it simply refused to close! And I got a small infection in the cut on one hip. But both problems were eventually resolved, with antibiotics, drainage and silver-impregnated dressings. Also disturbing, was how my body spat out the stitches over the next 8 months!

The months after the op were a grind - washing the compression clothing daily, dragging my poor stiff body to the doctors every few days, changing dressings, sponge baths and no showers, not raising my arm to minimise any additional trauma to the transplanted breast. The bandage industry must have loved me - there was only one brand I didn’t react badly to!

I dove deep into games playable with one arm to distract from the pain, broken up by a daily shuffle that kept getting a little longer.

The transplant started out very hard and high, as this photo shows. The scabs looked dreadful, and there were a couple of spots that were very slow to close. Over the last 1.5 years, it has softened (apart from one spot that had to be cut out), and dropped to be almost the same as my non-transplant side. Now when I wear a bra, you wouldn’t know one side is a transplant, apart from having no nipple!

Someone to help

Someone to help you get washed and dressed, change your bandages, help you stand up, cook, clean and wash clothes and the compression clothing… This is invaluable after such an operation.

And when they are not available, make sure the important things are at bench height: cups, glasses, plates, tea and coffee, milk, snacks, the microwave - not stretching in the early stages helps cuts stay together.

Compression clothing

The round-the-clock compression was hell - my skin doesn’t do well without being allowed to breathe. It didn’t help that it was a hot summer!

After 6 weeks I was ‘allowed’ to go around without compression, but kept wearing it for a few more weeks - I still couldn’t stand up straight, and I needed something to hold the bandages in place more securely on that darned spot on the tummy cut.

But the doctors and surgeons believe the constant compression greatly helped the healing process.

I still use the compression bras when I want a little more support, or for the days where my chest is sore - they are so comfortable!

Staying bent

I’m not a back sleeper. Or at least I wasn’t! After a DIEP, the only possible sleeping position is on your back. You should sleep with your chest/head raised to stop fluid pooling around the transplant. Plus, to not pull the tummy cut, you need to sleep with a pillow under your legs. So, you end up sleeping in a kind of a V position - I relied on a wedge pillow behind my back and a lymph-leg pillow under my knees and lower legs.

For months, I slept on the sofa bed upstairs because it was easier to roll in and out of. It took me about 4 months before I trusted I could safely get myself up from the futon on the floor without damaging anything. And about 12 months before I could sleep on my side, with the help of a body length pillow.

I’m still using both pillows - the wedge is ideal on the sofa or in bed for reading with better back support, and the lymph leg pillow is great while I’m working.

Good quality dressings and bandages

You will need to take your dressings off at least once a day to wash with salty water and disinfect. Which means your skin is going to get very annoyed with you. I found the (expensive) silicone dressings the best - no ouchiness on removal, and no reaction from my sensitive skin.

The (even more expensive) silver-impregnated Dracofoam wound dressings were for the holes that refused to close for a few weeks. I used the silicone dressings over them, as their adhesive caused rashes. Thankfully, I could purchase these dressings with my insurance - private, they would have cost a small fortune. But they were definitely worth it!

Gentle movement helps

Around this time, I worked on increasing the distance I could walk. After I got home, walking from the car to the doctors, or from the garage to the house was all I could manage. A week later, I made it to the pokestop a bit down the road from the doctors. At about 4 weeks, it took 40 minutes, but I made it the coffee shop in the middle of the town (normally a 15 minute walk).

At 8 weeks I had to shovel snow even though I wasn’t ‘allowed’ to by the docs - you are legally required to keep your paths clean in Germany, and my partner was working in a town 5 hours away. I took it slowly and spread it out over the whole day.

At 10 weeks, I was able to walk around the plateau (normally 60 minutes, but it took a good 2 hours). At 12 weeks, I could walk to my physio. At 4 months, I could also walk back, although it killed me for the rest of the day!

It’s not that you’ll be back your normal self after 6 weeks, the typical period doctors suggest you’ll need.

A year and a half later, if I don’t walk regularly, my tummy gets ‘sticky’ and sore both at the cut and under the skin that was separated, and starts to bloat.

I need to exercise and move to make sure that area is well supplied with fresh blood and the fluid drains.

Breathing exercises

Not moving, staying bent, abdominal surgery, being in pain - all of these will make you breathe very shallowly.

Being mindful and trying to breathe deeply, or using any of the lung-exercising tools like the three-ball flow ‘toy’ will help.

I had to ‘practice’ with my lung ‘exerciser’ 4-5 times a day. Fun.

Physiotherapy helps

Because you can’t/shouldn’t use your arm on your transplant side, the muscles in your shoulder and back need work to get their range of movement and strength back. And, ongoing lymph drainage massage on the transplant, arm and belly helps to prevent oedema.

I’m still getting regular lymph drainage massage, and still need occasional help for my shoulders and neck because I’ve worked too much.

The risk of all breast operations - fat necrosis

Part of the transplanted breast died on day 8 after the operation - maybe the heat had something to do with it? In any case, the outside of the breast suddenly swelled up and I developed a fever. The plastic surgeon came out of the middle of an operation to have a look, and decided the risk of cutting in again so quickly and seeing what happened was not worth it. Better to heal first, let things soften, then take another look.

The dead tissue in the outside of the breast was quite numb for many months, while the rest of the transplant was hard. But as the haematomas ‘melted’ and the transplant got software, that bit of fat necrosis didn’t.

At 6 months, this lump pushed into my arm and had pinched a nerve in my chest. I couldn’t even hold my arm against my body, let alone type comfortably. I had my arm always behind me, rotating my shoulder inwards, and it was doing terrible things to the tendon-based arthritis in my neck and back.

Fat necrosis is common, and almost always occurs after breast operations. It’s not bad or dangerous. But when it is a very large lump and pinches a nerve, it needs to be removed.

A second operation to remove the dead tissue

The local hospital’s best clinic specialists again gave terrible and completely unscientific advice: “Pomegranate juice and homeopathy will work just as well as chemotherapy”; and “This lump could be cancerous or something worse, and could kill you tomorrow - you need to get it out immediately, at best, today!” Ummm… oookay.

So…. back to Berlin to see my original surgeons, both the oncologists and the plastic surgeons. Yes, it’s fat necrosis, no it’s neither life-threatening nor urgent.

The planned operation was delayed at the last minute, thanks to my insurance provider. I had to get approval from an independent assessor to prove it was not cosmetic but rather medically necessary.

But it went ahead a few months later. A short operation of 1.5 hours, no bed rest needed, a few stitches and tape to hold the cuts shut. I went down to the cafe to have a coffee that evening! They had ‘cleaned’ up my lymph removal scar too in case that had contributed to the nerve pain.

Tissue analysis revealed - yes, it was definitely fat necrosis, and no it was not dangerous at all. Luckily, they’d packed too much belly into the transplant, so cutting out the dead bit meant I ended up with a nearly matching-sized breast!

I went home a few days later and it healed well with no problems.

A year and a half post-DIEP

I still have some hard lumps that are slowly softening - massive haematomas are slowly broken down and absorbed by the immune system. Of course, mine takes longer because my immune system is stressed by the other illnesses, like arthritis.

The first two mammograms were nerve wracking, but clear. There is no guarantee either tumour will reappear, in the other side, on the chest wall or metastasize to somewhere else. I’m due for my third soon.

I haven’t recovered feeling in my belly or my breast, which is quite disconcerting and needed time to adjust to. Being quite clumsy, I can’t feel how hard I bump into things and have had more than a few bruises appear. The feeling probably will never return. Pimples are more likely on the transplant and take longer to heal due to the reduced blood supply. My skin reacts much more easily to things I’m sensitive to, like washing liquids and sweat.

The docs and physio have theorized that I’ve developed an incisional hernia, probably through one of my old laparoscopy cuts, but it’s impossible to image. It’s not near any of the DIEP cuts, but stability was lost over the old laparoscopy incisions when they separated the skin and pulled it down for the DIEP. It’s worse when I bend and exert myself (washing floors), so I just have to be careful and keep an eye on it.

Impact on other illnesses

I haven’t been able to return to the Humira for the spondyloarthritis (psoriatic), as the immune system needs to break down the haematomas and what’s left of the necrosis in the transplanted breast. Turn that immune system off and the lumps stay as they are, plus it risks infections. Stiff and sore is my new normal, and the local orthopaedic doctors refuse to prescribe physical therapies for arthritis (“go to a rheumatologist and get immune-suppressants” …. um, no!)

The costochondritis (as part of the arthritis) has also become harder to deal with, seeing as the transplant is essentially dead weight hanging off clips in the chest muscles on one side. I resort to an ibuprofen when it’s too bad, otherwise, a massage chair, and a doubled massage ball on the wall while trying to breathe and heat packs are my go to tools.

he Reynaud’s has become so much worse. Stress? An argument? Immediate white fingers and toes. Too much typing? No blood in the hands! Cold weather? You don’t need your fingers! Sitting for just 15 minutes? You don’t need your feet!

Constant heat packs, hot water baths, and always raising feel when sitting is the only way around this. I have a portable hand-header and those disposable heat-packs where iron filings react with the oxygen for emergencies. Working in a normal office with a normal office chair is unthinkable at this stage. Or even travelling long distances without being able to put my legs up!

Not post-DIEP, but post-prednisolone, the rosacea and demodex-induced eczema is out of control and even affecting my eyes. Unfortunately, no doctor around here wants to try to treat it - the local dermatologist recommended to wash twice a day and use an over-the-counter moisturiser. He just shrugged when I said I was already doing that.

So, tea tree oil, gentle cleansers, moisturisers, special eye wipes, and a whole lot of swearing because so far, nothing has worked. It wasn’t helped that my new glasses proved I had a latex allergy (the new silicone nose pads contain latex!)

Cosmetic tummy tucks and breast surgery? Insane!

Would I recommend a cosmetic tummy tuck? Absolutely no way! It’s a very difficult operation, with significant risks. You may end up with a flat belly, but also a mangled belly button, and permanently disconnected nerves. It’s not worth it. Plus, if you have struggled with putting on weight before the tummy tuck, you’ll struggle afterwards. I’ve put on 5 kg, which makes the cut across my tummy tighter, and probably has caused the incisional hernia. Also, never ever cosmetic breast procedures! The risk of necrosis is there, with any type of breast surgery.

Of course, I have no problems where there is a (physical) medical reason, like to remove massive folds of skin from weight loss, or to eliminate back problems.

Yes. At least in certain circumstances. If you have enough belly fat and are permitted to have a mastectomy instead of a lumpectomy, choosing to have a combined mastectomy-DIEP is ideal. Having a DIEP years after a mastectomy makes it more difficult to get a ‘clean’ and well-shaped rebuild, and carries more risks of infections and necrosis.

Having a lop-sided chest puts loads of mechanical strains on your posture, your neck, back, ribs, arms, shoulders, … Had I been diagnosed with cancer in both breasts would have made the decision much harder - double mastectomy with no rebuild, or double mastectomy plus immediate DIEP on both sides. I’m not sure which I would have chosen. Either way, it needed to be a balanced result thanks to the arthritis.

Mastectomy and DIEP operation

Mon, 31 Jul 2017 00:00:00 +0200

A little over two weeks ago, I went up to Berlin for the mastectomy and rebuild of my left breast using my belly. I knew it wasn’t a small operation, but the warnings beforehand about all the possible complications rattled me. Still, it was either the cancer or this operation.

I had three surgeons and their teams looking after me in Berlin: a breast cancer oncologist surgeon, plastic surgeon, and my endometriosis surgeon. The oncologist in particular was incredibly helpful, setting up everything even without having a referral or seeing me.

I went into hospital one day earlier than normal, so we could get all of the tests and planning done the day before the actual surgery. As usual, the surgeons were the best, but this hospital is not so good on the organization front - 6 hours to ‘check in’ and get to my room. Despite having told me I needed to empty my bowels the next day, I didn’t, and was able to eat and drink normally until evening.

Op day

The day of the operation, I was first in, and put to sleep very quickly. About 10 hours later, I woke up in intensive care. I had a binder around my abdomen, three drains in my breast, two in my abdomen, plus a negative pressure vacuum with the sponge all along the abdominal cut. I actually woke up screaming about the pain in my heel, my foot. Most likely, the Achilles tendon had been resting on the hard operating table and was really upset with me. Loads of painkillers and stretching and that pain disappeared overnight.

The nurse came to check on the rebuilt breast every hour for 24 hours, using a Doppler device to check that the blood flow was good. After the first day they checked it every two hours, then four, then twice per shift until when I left nine days later. I was given intravenous antibiotics for five days, several times a day.

The most important thing, was to ensure a good, stable blood supply to the new breast.

Too many tubes!

I wasn’t really mobile for the first four days, with high pain and so many drains, IV lines and a catheter. Unfortunately in an organizational hiccup, the nurses had had me pack my things before the operation in case I moved rooms. That means that I had nothing other than my phone and I reduced toiletries bag, because the nurses were so overworked that I couldn’t in good conscience ask them to help me unpack some things. They didn’t even have time to help me wash or change the sheets most days.

When is the drains started coming out, I could sit up more easily, and stand for short periods. The catheter came out on day four, but because there was an infectious patient in the same room, I didn’t even try to get to the bathroom, instead I used a commode. When she had been moved into quarantine, and the bathroom disinfected twice, the nurses let me walk to and fro. It’s fantastic when the catheter comes out. It’s even better when the neck IV lines come out.

In case you’re curious, the surgeons separated the skin from tissue all the way up that blue line to the mole, from the hips. When the belly tissue was removed, they had to pull the skin down, and make a new hole for the belly button, poor mangled thing. My entire belly and breast was numb to touch - such a strange feeling!

The vacuum drain and the drains in the breast also came out on day four, I wasn’t really draining much at all, but that was probably because I was it moving. This was probably the most painful thing, with three surgeons pulling of the sponge along the cut, and the drains from under my breast. The remaining drains came out two days later. It may have been a little soon, because shortly afterwards my breasts swelled tremendously, and the belly started swelling above the cut to that mole. It may have also been due to the heat (30C!), especially as German hospitals are not air-conditioned.

Ongoing compression

Over the next couple of days, compression clothing was fitted – a compression bra, and what she called Bermuda shorts, from under the breast down to my knee with compression around my middle. The hooks were not too bad to handle with my poor fingers, and this clothing were a huge step up from the abdominal binder, which absolutely did not fit my shape.

The night before I was due to go home, a seroma appeared in the previously troublesome quadrant, and a solid hematoma spread under the breast. The plastic surgeon even came out of an operation to have a look at the ultrasound, but said at this point just to wait and see. I was taking antibiotics anyway, and the seroma was not large enough to drain with a needle.

The nurses hadn’t counted on me going home so soon, so the taper off the painkillers was abrupt. The seven hour journey home was reasonably uneventful, a couple of stops to walk around but I was ready for bed when I got home.

At this point, both the breast and the belly were mostly numb. There’s a layer of liquid between the different layers of skin and tissue - all nerves and most of the lymph system were cut. The most painful thing was a massive blister from the original abdominal binder.

Hospital checklist for mastectomy and DIEP

Here’s the essentials - what was actually useful during my hospital stay:

Slip on shoes, no socks.
Wet wipes, both for general skin washing and intimate wipes.
Electric toothbrush - much less energy required.
Earplugs, because the room was full of snores and sleep talkers.
Mobile phone and charger. Make sure you give the phone, or at least a phone number, to a nurse to deliver to you in intensive care, if your family are not waiting in person during the operation.
A large shawl that could double as a wraparound skirt, brilliant in the heat with the compression on. In winter, a bathrobe would do the trick.
Hand disinfectant gel and disinfectant wipes for the bathroom.
All results of tests leading up to this operation, and reports for related medical conditions.
Extra short hair - so much easier to take care of.

I’d ask visitors to skip the flowers, and instead bring fresh fruit or raw vegetables to munch, if you are staying in a German hospital. The food is abysmal. Bread, cheese and preserved meat for breakfast and dinner, and a tasteless warm meal for lunch. Also, be prepared for shared rooms with up to five people in them, which means they will always be hordes of visitors.

I went home on day nine, with the rest of my antibiotic course and a couple of mild pain killers. More about the start of recovery in the next post.

Breast cancer shock

Sun, 14 May 2017 00:00:00 +0200

I’ve just been handed a malignant breast cancer diagnosis after a (very painful) mammogram.

It’s hard to describe how overwhelming such a diagnosis is. Shock, disbelief, dread, but also a feeling of inevitability, and much cursing of Murphy - the unfairness of it all. Tears, anger, having to stay positive for other people (and yourself).

Get odd symptoms checked

The odd symptom began less than two months ago. A small amount of milky-white fluid leaked from one nipple. It was the problematic one that has enjoyed turning itself inside out since I was a teen.

I can’t be pregnant (no uterus), and I’m far from menopause, so I trotted off to the gynaecologist, thinking it was something simple - inflammatory or an infection.

Breast cancer tests

He tested the prolactin levels - the pituitary gland can malfunction - and then went on holidays. I was so relieved when the results were good (no brain cancer!) Then he sent me to have a mammogram, just to be ‘safe’.

Unfortunately, the result wasn’t safe: One quadrant on the left clearly had lots of calcification in the ducts. The amount, the spread, and the clarity (also during an ultrasound) made the doctor say she is almost certain it’s malignant on that side. The right also shows calcification, but benign.

Ductal carcinoma in situ. Crap.

Too many causes

Lots of hefty hormonal treatments for crazy, heavy periods, loads of radioactive scans, Fukushima, susceptibility to cancer in my genes? There are so many potential causes.

Some of the other common symptoms of breast cancer, I’ve had since I was a teen – inverted nipple and breast pain. No lump, although you can feel that it is a bit more solid in the bad quadrant when you lightly compare both sides.

No waiting lists for cancer patients

My mammogram was the day after I got the referral, and I saw the gyn immediately after the test, and made an appointment with the hospital next week for the initial explanations, with a biopsy to follow. Completely unlike the 3+ month waiting periods for tests and appointments for endometriosis, or the 6+ for chronic pain and rheumatology, and 12+ for psych and lymph.

Cancer makes doctors move fast, and show a lot more compassion than with other illnesses.

Good prognosis

It’s in situ - only in the ducts. It hasn’t spread to the lymph system, and it’s one of the most widely researched, common types of cancer. It’s now more common to do a lumpectomy followed by radiation and tamoxifen, but a mastectomy may be needed because of the spread. They do reconstructive surgery as ‘standard’ now.

The next hurdle is the biopsy results - how active are the cancer cells (if there are any)? This will guide my treatment.

I’ve been tasked with increased physical activity (despite the pain), and meditation/yoga. I might run off into games a little more often to switch my poor overloaded brain off, and have at least some sense of control and achievement.

It has put a dent in both my work travel and overseas plans for this year. So I’m happy to have found a good online Japanese grocer (in the UK), and am taking advantage of the good pound-euro exchange rates. :-)

I’ll keep you posted, and I will get through this.

Breast biopsy - nasty but necessary

Wed, 05 Apr 2017 00:00:00 +0200

A breast biopsy can be done in a number of ways, usually under mammography. The hospital didn’t give me all that much information, a few diagrams and some warnings. So I thought I’d share my experience here, and hopefully help others when they aren’t given much information.

If you get squeamish about needles, medical tests and blood, stop reading now.

My breast biopsy was to see if my calcified ducts, shown clearly in a mammogram, have cancer cells. And if so, what type of cancer cells they are.

This is just my experience, and may not be representative of your test or experience.

The prep appointment

I met with the radiologist one day before the appointment. I wish I’d had this appointment before I’d taken the Humira injection (every two weeks), as the one thing she stressed was that there is a not-insignificant risk of infection with this test. They clean everything as best they can, but they can’t guarantee that there are no bugs left behind.

At this time, I couldn’t imagine how that would be the case, but after the test was finished, yeah – it’s impossible to sanitize all the areas in the room and on the machine that were impacted.

She explained that my test would be a combination - a large needle would be inserted under mammography, with the tip on a calcified duct in my breast. (She didn’t say how large the needle was though!) Then 12 biopsies would be taken from within that needle with a vacuum technique. All of this would be done with local anesthetic in a sitting or lying position.

Sounds easy enough. I compared it to the punch biopsy I’d had recently on my leg - quick, easy, a few stitches, and a few days to recover.

The setup

Because the insurance companies here are über-strict, the previous mammography I’d had would not qualify me for treatment coverage: I’d had a horizontal and angled mammogram, the insurance requires horizontal and vertical.

So, first step is to take the missing vertical mammogram. Squishing my breast is always painful. 5 minutes for the setup and scan while standing. Done.

Then, I sat in a chair, and was wheeled back to the mammogram machine after they switched the plates. Instead of the solid plate on top, they need one with a hole to allow the needle to go through.

Once I was positioned as close as possible, the mammogram machine squished my breast again. This time, much stronger. This mammogram showed I wasn’t in the right position - re-position the squishing and take the mammogram again. And repeat. They commented that it was good I had larger breasts - the biopsy location wouldn’t have worked with someone smaller.

Throughout this entire process, you have to stay relaxed, and not moving. Two specialist nurses and a doctor were here setting me up, and they were fabulous at keeping me calm.

Finally, they had put me in the right position. 15 minutes of being squished in the mammography machine for this setup.

The breast biopsy

The machine was programmed - exactly which location the needle should be inserted and the depth to which the needle should go.

The doctor injected quite a bit of very fast-acting local anesthetic - I commiserated with one of the nurses who also always needed extra anesthetic. It’s not just me!

I kept my face turned away until the test was finished - I’m not good with needles. Nor blood!

The big needle was inserted into the machine, and then while two nurses were stroking my arms to keep me relaxed, it punched in.

I felt something warm around the area, but didn’t dare look. They had said it might bleed a bit, so that’s ok. I had no pain with the injection, only at the nipple because the machine was squishing so strongly.

Yet another mammogram to check that the tip of the needle was correctly positioned.

Another 15 minutes of being squished gone.

The specialist turned up at this point, double checked the positioning, and we were ready to start sampling.

Vacuum breast biopsy samples

Now the actual breast biopsy began - 6 sample needles vacuumed out samples from inside the needle. I was terrified that breathing would be making my breast slip out of the mammography machine, and they had to keep reassuring me that I was doing really well and not moving.

Each of these samples took time - sample needed added to machine, sample sucked out, sample deposited in the test tube (or whatever they used – I didn’t look). They commented that they could ‘hear’ that some of the samples were calcified - they sound different to non-calcified samples when they are dropped in.

I don’t want to repeat this test!

Then, time for another mammogram to see how things are going. Everyone goes behind the protective screen and looks at the monitor. This was when I saw the doctor’s gloves and sleeves - covered in blood. Crap. During the second half of the procedure, I had a lot more trouble staying relaxed and breathing ‘normally’, knowing this.

This mammo was unclear - they couldn’t see anything through the pool of blood that had developed inside the breast. Yay. “May as well keep going” was the decision - they couldn’t re-position anyway if they couldn’t see anything.

So, 6 more samples done. 20 minutes for the samples to be collected, along with the midway mammo.

Normally, another mammo is done at the end, but they said there was no point – the hematoma was too large.

The clean up

Time to remove the needle. This required several people behind, me and one who kept my eyes to the side, away from the machine, away from the other nurse and doctor. The specialist had already disappeared.

Needle out, mammogram machine released - I can breathe without fearing I might move! Breast biopsy now over!

Doc had a wad of bandages pressed to my breast, and she was wonderfully careful not to put pressure on my ribs (this procedure is a nightmare with costochondritis - a guaranteed flare!)

All up, about one hour in the mammogram machine.

I let them clean up for about 5 minutes before I dared to look around. OMG.

The top mammo plate has raised edges, and was filled with a pool of blood. And the attachment point to the machine was submerged, as was the lower plate and its attachment point. (This is why it can’t be completely sanitized.) The rolling wagon that the doc doing the biopsy had next to her also had a deep pool of blood. Blood splattered the doc’s clothes and shoes, and was all over the floor.

I half wish I could have taken a photo. It looks like the aftermath of something in a medieval torture chamber!

The final mammogram

The two nurses were cleaning up as quickly as they could - they need to take two more mammograms (horizontal/vertical) of my poor breast to finish.

10 minutes of compression, and the doc let go, ready for the test. Only a few seconds later, and the fountain started again. This time, all over my trousers and shoes. Another 10 minutes of compression - seemed to have stopped the flow.

Back into the machine. Horizontal was ok (5 minutes), vertical (also 5 minutes), started the flow again – all over the machine (again), the floor (again), and me.

Another 15 minutes of the doc providing compression - her poor hands were shaking at this point.

The specialist came back in and said that he’s not sure they had any usable samples. That I’d probably have to repeat this in 3-4 weeks, after the hematoma had healed and they could see again.

Crap.

The recovery

After such a breast biopsy, they don’t let you go home immediately.

First they tape the wound, put a bandage with iodine goop on it, and then a compression strap around your upper chest. Then you lay down, they put an ice pack over the site, and a sandbag on top to provide even more compression. And you stay there for an hour.

Do not use the arm on that side. Nothing - no lifting of a kettle, no reaching for your glasses, no moving it to put clothes on - do everything with your other side. Absolutely no cleaning, cooking, garden work, driving, nothing. Not even computer use! Compression bandage must stay on for 24 hours, if you can manage it. No shower for 3 days.

Thankfully, it was my left side. As a right-hander this would have been impossible!

Walking to get picked up was horrible. Every jiggle with every step hurt, and I couldn’t breathe with that bandage!

I completely understood when I got home - I couldn’t reach my arm forward without pushing on the site, not even to type at a keyboard. Large breasts really get in the way. Bah - I had to take sick leave from my part time position, something I had hoped to avoid.

Overnight with compression

It wasn’t a good night. I’m a belly sleeper - impossible position, even now, nearly a week later. Lightly dozing on my back was the best I could do. The compression bandage had rolled, and pushed into my spine, making the outside of my right arm and hand numb. I had to take it off in the morning - it was too painful, and the longer the numbness stuck around, the greater the risk of damage.

I could breathe!

To get the feeling back into my arm, massaging around the spine and shoulder blades with tennis balls in socks worked well. I would have used a heat pack, but not the day after the breast biopsy - it needs to be kept cool.

Large breasts really get in the way. Every time I even slightly moved my left arm, it brushed against the biopsy site. Extremely painful!

The second night, I had to sleep occasionally on my right side. By the third night, the costochondritis had flared - never sleep in one position where the ribs are compressed, so regularly. Costo hacks and ibuprofen to the rescue. Just one day and night of pain from that.

Bruising and the hematoma

It’s now been 6 days, and I don’t know the results yet (weekends and a public holiday). Hopefully I’ll find out tomorrow. The insurance company will not pay for any treatments until cancer cells in breast biopsy sames have been found under a microscope.

Seeing as duct calcification is recognized as pre-cancerous, I’d rather get the treatment (mastectomy) over and done with.

Stupid bureaucracy.

I’ve bruised spectacularly. And there is a solid warm lump - the bleeding inside has formed a large hematoma, which will be disintegrated over time. 3-4 weeks, according to the doctor. I’ve read that exercising helps it go a little faster, but it’s still too sore to use my arm much.

I took the covering bandages off on the 4th day, and felt sick to my stomach while doing so! I chose not to shower, because it started bleeding a little - the scab was stuck to the tape. I’ve changed this bandage each day since, and the bleeding has stopped (crossed-fingers). I haven’t been game enough to try to get rid of the black sticky residue from the initial dressing.

The needle hole is still about 6mm in diameter - that’s a huge hole. No wonder it hit a blood vessel.

Now, I need to have just a little more patience to get the results tomorrow. Hopefully they will find cancer cells, and we can start the treatment.

Results update: Cancer cells were found in the samples, staying only within the ducts. So, definite DCIS. This is ok. It’s clear, easily treatable, with a defined path of treatment to follow, and, the operation on that side (at least) is covered by insurance.

Why work only part-time and at home?

Tue, 14 Mar 2017 00:00:00 +0100

Apart from obviously having to deal with increased pain from working long hours despite being chronically ill, there are a number of things that eat away at time, much more than with healthy people.

I’m thankful that the times seem to have changed, and this question is asked more from curiosity rather than openly accusing me of being lazy (yes, this has happened in the past).

How much do you sleep?

Most full-time workers sleep around 5-8 hours, right? I sleep 10-13 hours. That’s already 5 hours gone from my day. Why do I sleep so much? There are many reasons:

Pain makes it hard to get to sleep, to stay asleep, and to get restful sleep.
Inflammation makes our immune system force us to sleep more.
More sleep = less pain the following day(s).
Lying down means that my lymph system isn't overloaded and making my legs and feet swell.

How many appointments do you have?

I’m not talking about meetings at work (I have those too), but medical appointments. With three physiotherapy appointments each week, a minimum of one specialist/GP appointment each week, and some kind of medical test at least once a month, an awful lot of time is spent in the waiting rooms (and in transit). It’s rare that doctors actually run on time.

I’d estimate I lose at 10 hours in the week with the lowest appointment load and least waiting time. This doesn’t take into account the hospital stays or operation recovery periods (a relatively recent occurrence - but it meant I lost 5-6 weeks in 2015 and 2016).

All of these appointments are during normal working hours, of course.

Diagnostic cycles, when something new has appeared, or something has changed, take a lot more time than just my normal ‘therapy’ appointments. Or trying to set up a new medical network after having moved towns. The combination of both? I’m averaging 2-3 specialist/GP appointments per week plus tests, on top of physio. I hate waiting rooms!

When a day just doesn't work

A perfect storm of flaring symptoms can render me useless. I can’t think straight, or even see straight - double/blurred vision is sadly becoming more common. So, I have to take a day off. I’m extremely lucky, in that I can shift my workload over to other days, or build up some overtime that I can use.

It would be exactly as if you took a day off sick. Except this happens regularly. That’s why flexibility is so important to me.

Everything takes time

Think of when you last had the flu, food poisoning, sprained your ankle, or broke a bone. Everything took longer - showering, dressing, standing up, sitting down, moving around, cooking, eating. Even thinking.

At the moment, all of the tendon sheaths in my hands are inflamed and causing Raynaud’s from the swelling, synovitis is affecting many joints, my bowel is bleeding from endometriosis cells (which are also bleeding into my pelvis), and lymph blockages have swollen my legs so that my knees don’t bend properly blocking blood flow to my feet and toes (more Raynaud’s).

Of course, brushing my teeth, washing my hair, even getting and drinking a cup of tea takes more time than a healthy person. Try getting through one tiny portion of your day without using your hands, elbows, knees and feet - even turning over in bed takes longer.

Exercise has more importance

I know, I know. Everyone is under pressure - they should exercise more, go to the gym or a yoga class and get fit. Note the “should”. It turns into an every-day must when you have an immune disorder that’s affecting your joints, tendons and muscles. That means stretching, strength and cardio, with supporting equipment of course, as full-on weight-bearing will cause more damage. A little at a time, spaced out, every day. This takes time, and is not easily done at the office.

When you can't sit for long

The best position for my lymph system is with legs up. To combat Raynaud’s, I need to be covered in blankets and surrounded by heat packs. My sofa is my office. I have a good lap-desk, and a pillow to support my mouse hand.

If I sit in a normal chair without compression, my hands go white (no blankets or heat packs), my ankles grow to the size of my calves, and my feet turn white and blue. Cyanosis isn’t fun.

Long car or train trips? Dreadful. I jumped in a warm shower after returning from Wiesbaden, and my hands and feet went black before the blood finally and painfully returned.

In summer the swelling is worse, and there’s no air conditioning here in Germany (although, air conditioning is bad for sinusitis).

Work-life balance

You can see this being eroded in healthy people’s lives - 50-60 working hour weeks are quite common. That also means that ‘part time’ is under pressure to shift upwards. 20 hours becomes 30 hours. Sure, there are people who thrive on lots of work and long hours. Most don’t have complex and chronic illnesses, and are still in the process of trying to find a diagnosis.

Sick people deserve work-life balance too.

Life shouldn’t just be about work, there should be other activities to give your body and brain a break. Time spent sleeping, waiting, in appointments, and doing mandatory exercises doesn’t count.

Chronically ill people deserve to have fun and take their mind of work. It’s even more important to be able to take their minds off their illness!

If you work part time - why do you do it?

Have other people criticized your choice (or lack of choice)?

Let me know in the comments below!

A quick check-in for healthy habits

I’ve been doing well on the meditation front, although it’s mostly been an evening, bed-time meditation that helps me get to sleep (Pavlov!)

I’ve failed at the daily 2L of water - I’m just not thirsty, and when I force myself to drink more, I feel nauseous. This is not good, because more water means less bowel pain and fewer headaches. Perhaps it will get easier as the weather warms up.

Anger management - a healthy habit challenge

Tue, 14 Feb 2017 00:00:00 +0100

In all of the stress and frustration surrounding my recent doctors’ visits, I’ve stopped a number of my healthy habits. I need to calm down, focus, and re-establish these habits, so that the anger doesn’t have so much of a detrimental effect on my body!

How to make me furious

The only ‘local’ rheumatologist here, has discounted the diagnosis of spondyloarthritis in one 10 minute appointment.

The head rheumatologist at the hospital in Leipzig made and confirmed this (difficult) diagnosis last year, when I was admitted to hospital three times - his team got to observe and test me over 3.5 weeks. But because they didn’t follow the local rheumy’s diagnostic criteria, their diagnosis was invalid.

I’ve been furiously running repeats of the conversation with the local rheumy (in German!) in my head, and preparing to explain (again in German) to my GP, why I wanted to change rheumatologists.

Rheumatologist believes in 'alternate truths'

These are the false statements that the local rheumy tried to convince me were true (and the facts in brackets):

There is no such thing as undifferentiated spondyloarthritis (rheumatology textbooks and research papers say there is).
Spondyloarthritis can never occur without the HLA-B27 gene (5% have spondyloarthropathies without this gene).
Spondyloarthritis can never occur without sacroiliitis (psoriatic arthritis, lupus, and Crohn's don't usually include sacroiliitis, but are also spondyloarthropathies).
Enthesitis can never occur in the hands (there are three locations in the hand where the basic rheumatology textbooks state enthesitis commonly occurs).
Enthesitis can never occur without the Achilles tendon being inflamed (enthesitis can occur on any tendon, individually or in combination, according to those basic textbooks).
Celebrex (celecoxib), a COX-2 inhibitor, has no anti-inflammatory action, and is a pure pain killer (the COX-2 enzyme is responsible for inflammation and pain).
Prednisolone does not affect inflammation in any way (prednisolone binds to glucocorticoid receptors, which then either synthesize anti-inflammatory proteins, or block the production of inflammatory genes).

He has written to the GP, taking me off all anti-inflammatory medication, including Humira. All forms of physiotherapy were recommended against - something which kept me much more mobile in the last year.

He blames my raised inflammatory markers purely on being overweight (even though my markers are far too high for that), and the tendon pain and obvious swelling purely on fibromyalgia, prescribing anti-depressants (which did nothing for me back in the 90s), and exercise.

To say I’m angry about this, is an understatement.

You could even say I’m being consumed by anger at this point.

Such anger is not healthy

Fury is not healthy, in both the short and the long term, let alone when trying to manage chronic illnesses.

It makes you sleep very poorly, especially when conversations are constantly replaying in your head.
Muscle tension rises off the charts and encourages cramps.
You get chronic headaches, jaw pain and eye strain.
It is impossible to concentrate on anything - work and relationships suffer.
You can't find any fun in normally enjoyable activities.
Good habits fall by the wayside, bad habits are picked up.

So, while I wait for an appointment with a non-local rheumatologist for the next 6-8 months, I need to calm down, focus on getting through the upcoming disabling time, and pick up my good habits again.

Focusing on good habits to chase away the anger

The experts say to focus on one habit at a time, and that it takes 21+ days to build a habit. That's how I started those habits last year, and I was doing well for many months.

Because I had established two of the habits last year, I'm going for two to start with.

Feb/March - Drink 2L water & meditate for at least 10 minutes with Calm.com.

March/April - Stretches and foot exercises, following Katy Bowman's Whole Body Barefoot and her daily Movement Multivitamin.

April/May - Write 750+ words each day (not including work), following the Right to Write.

I'll check back in here with my progress.

What are you working on?

Are you working on any habits, good or bad? How do you deal with anger?

Let me know in the comments!

A link between endometriosis treatments and lipedema

Fri, 18 Nov 2016 00:00:00 +0100

Lipedema is when fat is stored in the wrong layer, usually on the butt, thighs, around the knee, lower belly, and sometimes arms. It’s almost always symmetrical, and almost always triggered by puberty or menopause - when there are big hormonal changes. It often occurs after surgery, and almost only in females. It is painful and debilitating.

This wrongly positioned fat puts physical pressure on the lymph system, and stretches out the skin - tight skin is required for the lymph system to work correctly. This is why lymphedema often develops from lipedema. Exercise without compression to simulate tight skin will make it worse.

Lymphedema is where arms and/or legs swell. It is usually one-sided, and happens when when your lymph system doesn’t work. It often occurs after lymph nodes in the groin or armpit were removed during cancer treatments.

Lymphedema treatments focus on:

reducing the water load with diuretic medications.
fixing the lymph system using regular manual lymph drainage (MLD) massage and compression clothing or bandages.
weight loss.

Much research into lymphedema has been done, especially in connection with cancer treatments.

There is very little research into lipedema, and it is still usually misdiagnosed as pure obesity. But this particular type of fat doesn’t go away with diet and exercise. Nothing seems to alter this improper fat storage behaviour. In fact, you can be severely anorexic and still have lipedema.

Around 11% of women have lipedema. Although, the vast majority of these women remain un- or misdiagnosed.

Lymph-sparing liposuction is the only treatment that shows any clear improvement in symptoms. It is currently only available in Germany and it is not covered by insurance. At $5000+ per target area, it’s prohibitively expensive.

You can use MLD massage and compression clothing to prevent the worsening of secondary lymphedema, but there’s no promise that these treatments will help lipedema symptoms.

Endometriosis treatments cause big hormone changes

I’ve had so many treatments and operations for endometriosis over the years:

Visanne for nearly two years, then another year after taking a short break.
Complete hysterectomy in 2015.
One course of Lupron in 2014, and two courses of Zoladex in 2000 and 2008.
Five laparoscopies between 1999 and 2015.
Twelve years with three different Mirena IUDs.
Countless implants, and birth control pill experiments.

No-one said that any of these could damage my lymph system. This seems pretty obvious to me now, as you are cutting into and inside the pelvis during operations and the hysterectomy. And no-one said that drastic hormonal changes can trigger lymph problems.

A chemical menopause counts as a drastic hormonal change, doesn’t it?

Endometriosis treatments affect the lymph system

“Water retention” is listed as a common side effect of Visanne and other progestins. Lymphedema is a side effect of Lupron, and ‘puffiness’ is a side effect of the Mirena IUD. Hysterectomies have been linked to salt and water retention, as have imbalances in women’s sex hormones.

It’s relatively clear that the medications and treatments that play with our hormone balance can and do cause lymph problems.

One wide-ranging review paper suggests that estrogen may be a primary trigger for lipedema.

Endometriosis medications and hysterectomies all drastically alter the hormonal balance, so they could potentially trigger either illness.

Lipedema as a result of endometriosis treatments? Maybe.

No one can say for sure what my trigger was.

I only know that I started developing symptoms around the time of my hysterectomy, just after the treatment with Lupron. The edema continued to develop quickly while taking Visanne.

It has worsened alongside my arthritis at about the same rate, so there may be an inflammatory link.

After contacting the endometriosis clinic in Berlin, they suggested I stop taking Visanne to see if it changes the amount and/or painfulness of the edema. If not, then Visanne is not the cause.

That’s what I’m doing now. I’m wearing compression clothing whenever I need to be on my feet, sit for a long time, or exercise. And I’m trying to get the docs to prescribe me MLD massage, but so far, no luck. They will be sending me to a specialist lymph clinic in the near future.

It’s too early to tell if the hormone pause will continue to help, but I lost 5kg and two dress sizes in ten days immediately after I stopped taking it. They’ve said to stay off it, and see what happens in summer.

Have you experienced edema of any kind with your endometriosis treatments?

Prednisolone rebound

Wed, 20 Jul 2016 00:00:00 +0200

Despite what several rheumatologists I’ve seen recently have sworn, prednisolone rebound is a very real and painful thing. [1,2,5]

Psoriatic arthritis and spondyloarthritis are the two types of arthritis where you can get a rebound flare from prednisolone, even when you taper slowly. [9]

I was on it for about 6 months, tapering from 40mg to 10mg quickly, from 10-5 a bit more slowly, then a month on 5mg while trying to get my symptoms stable under methotrexate. Then 5 weeks to taper to nothing, leaving my spondyloarthritis un-medicated.

Initially it was okay, a bit of stiffness, especially in the mornings.

But then summer hit.

I’m always get worse in the heat.

What happens during a prednisolone rebound?

It depends on your flavor of arthritis.

For psoriatic arthritis, it will usually start in the hands and feet - finger and toe joints and heel/achilles tendon will get inflamed, sometimes looking like sausages (dactylitis).

Or if you have skin involvement, the psoriasis will flare. [10]

For a mild rebound, this may be all that happens.

In a strong one, like what I have at the moment, every single joint, every tendon, every piece of cartilage becomes inflamed. Even the tendons behind and above my eye are swollen, stiff and very painful.

Joints can also get inflamed (bursitis and synovitis), not just the tendons.

The spine can get involved if you have spondyloarthritis.

A rebound can include your eyes, causing conjunctivitis (pink eye), iritis or uveitis.

The swelling around the nerves can cause burning or spiking pain in various locations, typically hands and feet.

The swelling around the lymph system can cause edema, resulting in more swelling and stiffness. Especially if you have any areas that have already been damaged, such as with multiple sprains of the same joint.

I bet that inflammatory bowel disease would also flare, but I had that under control with probiotics before finishing the prednisolone.

Some people can also get extreme fatigue, a fever and chills.

From what I’ve read, prednisolone rebound can last months after finishing a longer or high dose course.

How is it treated?

Ibuprofen and stronger NSAIDs are not recommended for tendon inflammation (tendonitis) because they delay healing.[8]

There isn’t much you can do for enthesitis (where the tendon attaches to the bone), and it can be exquisitely painful, especially in the feet. Infliximab and etanercept are the only two medications which seemed to help severe enthesitis. [2]

Chondritis is normally treated with anti-inflammatories, or cortisone injections, risking another rebound, or compounding an existing one.

Dactylitis is also difficult to treat, with infliximab having the best results. [2]

And although these are often prescribed, methotrexate, NSAIDs, and long term prednisolone are not recommended for either psoriatic arthritis or ankylosing spondylitis with spinal involvement, due to the lack of supporting positive results in scientific studies. [1,3,4,6,7]

It's debilitating

I have no ankles - the achilles tendon has swelled to the width of my ankles, and my foot has swelled up like a balloon. Walking is terribly painful, and I have only one pair of shoes which fit (low-profile mary janes, very adjustable).

Standing from sitting, or standing up from my futon bed is very difficult as the tendons, muscles and joints in and around my knees and hips have visibly swollen.

Kneeling? Forget it.

Putting shoes and socks on? I don’t bend enough to reach, and my hands are too painful to hold the socks.

My eyes are quite red and I’m looking rather cave-man-ish, with swollen brows and jaw. The pressure causes headaches.

My hands are useless - the fingers don’t bend properly and I have no grip strength. The knuckles feel like they’ll pop, and the pain on any applied pressure is incredible.

Putting a hair band around my hair? I could scream.

I’ve lost a lot of range of motion in my shoulders, with pain on movement that takes my breath away, mostly in the acromioclavicular joint. It’s hard to find a position to sleep.

Closing or opening a bra? Nope.

I have to be careful about my posture and breathing, because the costochondritis is constantly on edge. When it goes, I do take an ibuprofen and lie on a heat pack - my usual tricks to keep costo under control.

Lower back and cervical spine have recently joined in, becoming very stiff (but not really ‘sore’).

Despite the summer heat, I often have chills and a slight fever.

It’s difficult to walk, use my hands in any way, move my eyes, and breathe. It’s truly disabling.

What helps prednisolone rebound?

I don’t know.

Pain killers don’t touch the pain.

Ibuprofen seems to only help the cartilage inflammation (nose/costochondritis), not the rest of the ‘itises.

What I've found

Exercising in water does feel good and helps with range of motion, while I'm doing it. I stiffen up after class quickly though.
An ice pack on my feet helps with the burning, and to get to sleep on hot nights. Anywhere else, it provides a little pain relief but adds heaps of stiffness.
A heat pack helps my spine and the costochondritis, but is uncomfortable in the heat of summer. Anywhere else and it makes the swelling and pain worse.
Deep breathing keeps my lungs expanding with less pain than if I breathe into my belly. This is worst in the mornings.
Hot weather makes it worse, possibly through increased edema. Lymphatic drainage massage can help a little to reduce the edema.
Lymphatic drainage massage helps reduce the edema, but does nothing for the inflammation. It is relaxing though.

One physio has said there is nothing that can be done - I should avoid stronger forms of massage, avoid stretching strenuously, avoid exercising (except in water). And that with enthesitis and tendonitis, you should rest a lot, and switch between lying down and gentle movements regularly.

If you find that something helps, other than going back on prednisolone or starting infliximab, please do let me know!

Integrative medicine doesn't exist

Wed, 06 Jul 2016 00:00:00 +0200

At the moment, integrative medicine is just a dream.

The two sides of medicine (western vs ‘natural’) oppose each other so vehemently.

Traditional doctors and specialists seem to want to push pharmaceuticals, and little else. These medications are supported by scientific studies, usually large scale, but sometimes quite dodgy.

Natural or alternative doctors typically avoid pharmaceuticals as if they were the devil, but they have a huge range of things to try - supplements, diet restrictions, naturopathy, acupuncture, energy medicine, homeopathy, chiropractic, Chinese herbal medicine and more. These are usually unsupported or even contradicted by scientific studies, and are often very expensive.

A middle way?

Complementary alternative medicine (CAM) are therapies that help, or at least don’t worsen the patient’s condition, while they follow ‘standard’ biomedicine. Although many doctors regard these therapies as little more than placebo.

Integrative medicine goes one step further, and should see practitioners on both sides respect each other and work together for the overall health of the patient. They should also include and respect the patient.

In practice, this rarely happens.

Integrative medicine requires trust and co-operation

At the rheumatologist, the questions and comments I get about my spondyloarthritis treatment are:

Have you tried this medication?
Are you sure you had an allergic reaction to it?
Are you sure the headaches are from this and not something else? Other patients are fine with this medication.
Have you tried this pain killer?
Are you sure you can't take anti-inflammatories - your kidneys might actually be fine? (no, a birth defect doesn't fix itself)
Are you sure you have these side effects?

At the alternative medicine practitioner/physiotherapist, I get similar, and yet different, questions:

Have you tried a dairy free / gluten free / ketogenic diet?
Are you sure you didn't see any improvements?
How long did you try it for? (They assume it was for too short a time to see effects)
Have you been tested for allergies? You know, they can cause endometriosis and inflammatory arthritis …
You shouldn't be taking medications, so what else have you tried? Homeopathy? Ayuverdic medicine?
Did you really feel worse after the treatment?

There is one thing these two sets of doctors agree on:

You know, it's probably just because you are obese. Lose some weight. How, when they can't even walk because of the pain? Stop eating perhaps?

It’s no wonder that patients are not happy with doctors and therapists, and they are frustrated with their patients.

There needs to be more respect

Both sets of practitioners constantly disparage each other and their treatments. Although GPs do tend to send people to physiotherapists for muscular problems, alternative practitioners often advocate avoiding GPs completely.

Both sets of ‘doctors’ don’t look at the whole body. Even physiotherapists and osteopaths work on a small and limited area when doing manipulative therapy.

Both sets disregard, disbelieve or even outright ignore their patients.

My psych is right

Medications can be helpful or harmful (or both), as can natural medicine and therapies. Doctors and therapists need to work together. The patient needs to learn about and manage their own health, treatments and therapies.

To reach truly integrative medicine, practitioners need to have respect for each other and work together. Plus the patient must both respect and be respected by their practitioners.

Until then, it’s up to us as patients, to do the integration ourselves.

Respect yourself - take charge of your own treatment

I have had to remind myself of this, especially after the last year or two.

Each day is a chance to experiment and observe to find the medicines and therapies that work.

Sometimes our experiments will fail, occasionally spectacularly.

Sometimes something will help enormously.

Our changing circumstances and bodies will mean that treatments will have to change too.

So, we should never stop experimenting, observing, or actively working on our health.

Note to self - even when it hurts so much.

Especially when it hurts.

Unmedicated spondyloarthritis?

Fri, 01 Jul 2016 00:00:00 +0200

There is a huge lack of information about what happens if you don’t medicate undifferentiated spondyloarthritis.

Heaps has been written about how rheumatoid arthritis destroys your joints if you don’t stop the inflammatory process.

In ankylosing spondyloarthritis, it’s said that fusion of the spine occurs (faster) if you don’t medicate.

But with undifferentiated?

There’s nothing, apart from the occasional warning article about progressive eye damage.

It’s useless asking the rheumatologists here - they just want to give you medication.

Why is it undifferentiated?

I have bits of all the spondyloarthropathies - my eyes, bowel, chest (costochondritis), lumbar spine (sciatica), synovitis in several joints (asymmetric), achilles tendonitis, plus the occasional psoriatic skin flare.

That’s why it’s undifferentiated - I don’t fit in one category.

They don’t know in which direction it will develop - psoriatic arthritis? Ankylosing spondy? Enteropathic arthritis - inflammatory bowel disease?

Wait and see.

New symptoms since stopping MTX and prednisolone

Now that the medications have (mostly) left my system, I feel worse off than before I started the medication shuffle in February after being diagnosed with undifferentiated spondyloarthritis.

Shortly after stopping methotrexate (MTX), costochondritis flared out of control. That’s not new, nor unexpected. Take away something that suppresses inflammation, and costo will flare first, hard and often. It’s settled down mostly, for now. The sternum is incredibly sensitive though.

Edema

Constant edema in mostly my left foot, ankle and calf muscles is terrible, especially on hotter days, or if I have to be on my feet for a while. It turns up in my right foot and hands when I walk. When it’s bad, it swells up behind my knees and aches at me. It comes along with numbness and tingling from the pressure. And not fitting into shoes.

I’ve tried raising my legs (and getting stiff from sitting or laying too long), ice packs, heat packs, massage and most recently, a foot bath.

On hot days I feel like one of those animal balloons that clowns make for kids.

My advice - don’t repeatedly sprain any joint - it leaves the area susceptible to holding water.

New joint pain

More frustrating is the pain around the joints, all joints. It’s intense, not there when at rest or when there’s no pressure on the skin, but when you try to do anything, grab something, even the fingertips explode.

I’ve never felt this type of pain, nor the stiffness that accompanies it.

It’s as if the veins are bruised, although my skin isn’t showing any bruising.

Around every finger joint, throughout the hand, wrists, elbows, ankles, heels, hips and knees. Strangely my toes don’t feel too bad. Deeply breathing into my upper chest hurts in a similar way.

Could it be a nasty form of enthesitis, something that is common in spondy?

One that affects nearly all joints in the body at the same time (not something I’ve read about)?

Ibuprofen hasn’t helped. Soaking hands, keeping everything constantly mobile and moving very carefully gets me through each day. But even holding a knife or a toothbrush can force a painful squeal when it presses ‘wrongly’.

Apart from the areas with edema, there’s no swelling or heat.

It might just be a withdrawal spike, one that settles over the long term.

Touch wood.

But I’m wondering - what happens when you don’t medicate?

How does undifferentiated spondyloarthritis progress without medications?

No prednisolone, no sulfasalazine, NSAIDs, methotrexate, or biologics.

Definitely an increase in pain and inflammation, but you avoid the side effects, which can be debilitating (like the methotrexate headaches).

Uveitis - inflammation in the eye - does progress, if you have it. This can be watched by an ophthalmologist, which I see anyway because I have glasses. If necessary, topical steroid eye drops will control this aspect.
IBD - the medications don't typically help this aspect anyway, and some can actually make it worse.
Psoriatic arthritis - long term inflammation can lead to joint damage. But I don't have much showing in xray or scintigraphy tests (other than degradation in my skull). I don't have the typical joint involvement consistent with psoriatic arthritis, and although this was my initial diagnosis, the specialists aren't confident of saying I have this type.
Ankylosing spondyloarthritis - over time, the inflammation will fuse the spine, unless medicated. It usually takes 10 years from symptoms beginning to see any bone changes in xrays. I've had symptoms for 30 years, and still don't have anything visible in my spine.

None of the medications are good to take long term for chronic synovitis or enthesitis (inflammation of the soft tissue around the joints).

Moving on carefully

I don’t want to get back on the medications, mostly because they have caused terrible side effects. So I’m taking it a day at a time, and seeing how I can help myself cope (or improve).

But it’s official - I’ll be moving house (and states) in a few months.

Eeek!

It will be a mindful 4 months, carefully sorting and packing, minimizing time on my feet, and carefully traveling long distances to house hunt.

I’ll drop some doctors visits, tests and new therapies to let me have more energy to put into the move.

Things I’m currently trialling to combat the inflammation:

IBD/IBS: probiotic capsules - after one week, the daily crazy bowel cramps have stopped, yay!

Uveitis / conjunctivitis: hydrating eye drops, many times a day.

Joint pain / stiffness: Katy Bowman's Whole Body Barefoot stretching routine and her Movement Multivitamin DVD. Epsom salt soaks. Turmeric capsules (starting in a month - trialing probiotics first).

Costochondritis: tennis ball rolling around shoulders and thoracic spine, and the Movement Multivitamin DVD (which has been working fabulously), plus the other usual things I do to keep costo under control.

Edema: stay off feet, drink lots, epsom salt soaks, ice packs, no cycling at the physio gym. Not doing the procaine infusion therapy my pain clinic wants me to do (can cause edema). Compression when traveling. Also, lymphatic drainage massage.

Do you know how spondyloarthritis can develop?

I’d love your help and advice.

Do you know how undifferentiated spondyloarthritis progresses, with or without medication?

What things help you cope with spondyloarthritis, if you aren't on prescriptions?

What things help you with enthesitis and edema?

Thank you!

Tapering and withdrawal

Thu, 16 Jun 2016 00:00:00 +0200

I’ve had to taper down from or suddenly stop a number of medications now.

Each medication is very different in the tapering and withdrawal effects (or lack thereof), and each time it seems to get harder.

Suddenly stopping a medication that you are allergic or badly sensitive to will have fewer negative side effects. Stopping sulfasalazine made my itchy, blistered rash go away quickly. Stopping Avanza stopped my panic attacks. Dropping Tramadol let me sleep, for the first time in a week.

But coming off medications that are actually helping, is surprisingly difficult.

Anti-depressant tapering

My first difficult taper was Effexor, an antidepressant notorious for causing horrible withdrawal effects. It had worked well for a few years in university, but I felt no emotions in anything I did.

The doctors agreed I should come off it, but didn’t give me any timeline. Internet horror stories had me cringing in fear, so I decided to taper more gradually.

I was on the lowest dosage capsules and inside these capsules were granules, not powder. Each daily dose, I’d open the capsule very carefully, count out an increasing number of granules, then reseal the capsules.

It was tedious to count the granules, but I could taper down over one month. I still got the scary lightning-like mini-blackouts several times a day, and they continued for a few months after I had stopped.

It was a month where I was house-sitting for a friend and on holiday, so the insomnia and crazy distraction-gaming sprees wouldn’t interfere with anything.

Stopping methotrexate

This was a sudden stop, no tapering. Previously, the headaches that came after each dose of MTX would leave me whimpering in bed or the couch. At the end of each week, I’d recovered somewhat. The longer time went on after the last methotrexate dose, the less severe the headache became.

It took about 4-5 weeks to reach my first headache free day. It feels about right, as friends say that’s when their symptoms of RA return.

I have had more stiffness in my joints and in the mornings than I anticipated, but it’s so much better than the crazy headaches.

Thankfully, I am managing to keep the costochondritis (a symptom of spondyloarthritis) mostly at bay with a couple of tennis balls, heat packs, stretches, and the occasional ibuprofen. Even though it has given me several days of nasty spikes. I wasn’t at all prepared for this to flare, but it seems the MTX was helping some of the spondy symptoms.

Prednisolone withdrawal

The first high dose of prednisolone is a miracle - it takes away all inflammation and pain. I can move, I have energy.

Euphoria and energy are some of the common side effects.

As I taper down, positive energy disappears, insomnia sticks around, joint stiffness, inflammation and pain slowly build up.

I stayed at 5mg for a few months, but neither this nor MTX were controlling the CRP values in my blood. The rheumatologist wanted me to take a full on break from all rheumatic medications.

An extra slow taper from 5mg to nothing is better for those who are sensitive, but with the pain clinic waiting for me to be off prednisolone, I had to taper 1mg per week.

I’m now a couple of days after my last tablet. I’ve no idea if I feel so bad because of the prednisolone leaving my system, a virus, or something else.

I’m swollen from head to foot. My fingers feel like painful, fluid filled sausages. My wrist and shoulders spike and crunch with each movement. My jaw and teeth think I should stick to smoothies. And my poor feet - it’s like standing on a balloon filled with pin tacks. Even my hips and knees have joined in!

Oy.

I hope this will disappear in a week or so!

I’m pretty sure I had a similar reaction when coming off the first smaller and shorter dose of prednisolone last year. But it was no where near this bad.

To ease withdrawal effects

These are the things I am trying to do so I can get used to being rheuma-medication-free as soon as possible.

Don’t beat yourself up - I’m failing at this. I desperately want to get back to the gym, cook, clean, work, walk, and potter in my garden. But I need the time to re-settle in my body without the medication. Then I need to gently get it moving again.

Don’t schedule much - If your medication has nasty withdrawal effects, schedule as little as possible. Take time off, keep appointments and social commitments to a minimum. Easy to say, hard to do. I am grateful my workload has been light these past few months.

Do things you like - I’m missing crochet with most of my projects finished, and that’s increasing the perception of pain. Until the last bit of prednisolone taper, piano filled the gap, but the wrist is a too raw and fingers too swollen right now. So, I’m going to buy myself some new wool.

Prioritise sleep - Moving the phone out of the bedroom has helped enormously. I have a habit of looking up anything that pops into my head, even if it’s in the middle of the night - the fate of the insatiably curious. Keep that temptation out of the bedroom!

Move gently - It’s so tempting to curl up on the couch with my computer or a book for the entire day, but it makes stiffness worse. Stretch regularly, change positions often, use a tennis ball and massage the feet, or shoulders against a wall. Don’t rush movements, or strain - like when I hold and brush one of my cats who hates combs. Exercising in warm water is especially soothing.

Increase your self care - I have teenage oily skin (thanks to endometriosis and Visanne), so I was not prepared for the dryness and itchiness that came with the swelling. A good excuse to enjoy some moisturising shower gels and lotions. Massage helps, especially if someone else can give you one!

Use distractions - reading, gaming, brushing the cats, chatting to friends, playing piano, ‘helping’ cook by keeping the chef company, writing, crochet. Anything gentle is good that keeps my attention away from thinking ‘this hurts too much, this sucks’.

Breathe - I forget to do this. I am a belly breather, and rarely move the top of my lungs. I ‘lock’ my breath when in pain, especially when moving. To combat this, in bed I focus on breathing deeply, slowly, and consciously try to relax. I’m bad about doing this throughout the day.

What else?

What other things help you get past tapering and withdrawal effects?

Too many interests and chronic illness

Wed, 08 Jun 2016 00:00:00 +0200

I’m the first to admit that I have ‘too many’ interests and hobbies, and certainly never enough time or energy to pursue them.

Curiosity about everything drives me to keep learning, about anything that grabs my attention.

A test result mentions a term I don’t know, so I dive into learning more about anatomy, and the illnesses that can affect that particular section of the body.

Someone mentions an interesting fact from history, Wikipedia to the rescue, and off I am into the rabbit hole of linked historical facts.

Crochet piqued my interest, and 12 months later, I have a big rolling tub full of wool, many projects underway, and a number of large finished projects under my belt.

I hear a word that I feel may not be used quite correctly, or perhaps I’m unsure of the actual meaning, and into a dictionary I dive, researching etymology and slang usages.

It was always this way.

Extra classes in high school (languages and music on top of a science-heavy core), five musical instruments and lessons, plus choir and music teaching, a couple of jobs in libraries, tennis, swimming, sewing, knitting, cross stitching, and more.

Until illnesses took a lot of my energy away.

When illness takes over

In the last couple of years of high school, the costochondritis flared constantly enough that I could breathe properly or raise my arms in front of me for long periods - piano, singing, clarinet and violin had to be stopped. Luckily, I could keep on with percussion or I might have gone mad without any music!

Tennis and swimming also had to go, and even carrying books became difficult. Cross stitch had to be relegated to a stand and done sparingly, sewing and knitting made too much tension, so disappeared for a while. I’m not sure if it was related, but asthma also reared it’s head.

Along with the costochondritis, came aggressive endometriosis / adenomyosis and almost daily migraines - I spent much time in agony in the school’s sick bay.

With so many of my activities taken away, replaced with pain and exhaustion, depression started to take hold. I constantly beat myself up for being sluggish, anxious and lazy.

Although, it’s been decades since then, and I have gotten better in knowing my limits, noting triggers and listening to my body, I still feel imbalanced.

I don’t know what to prioritize, where to spend my time, and the urgent stressful feeling of never having enough time and energy can be overwhelming.

It’s easy to prioritize work, home and social tasks above hobbies, but hobbies are vitally important when dealing with chronic pain. Happiness reduce the sensation of pain, they distract from pain and are therapeutic.

All too often, hobbies and interests are the first to disappear with chronic illness, as happened to me during high school.

Multipotentiality VS chronic illness

My curiosity drives me to keep learning about so many topics - like the ‘renaissance man’. I was fascinated by maths and the sciences, but also by the arts - music, languages, literature. I wanted to learn everything, do all the hobbies and more, be an inter-disciplinarian.

Emily Wapnik’s TED talk about why some people don’t have one true calling resonated with me to the core. I’m less of a scanner type of multipotentialite, instead I like deep diving, but changing what I delve into regularly.

Some aspects of multipotentiality conflict with my needs as a chronic illness battler.

I must not get lost in a task, or I’ll run my energy reserves out and end up physically suffering. No playing piano for six hours straight, as I used to.

I love teaching, especially longer classes for adults and workshops. Evenings are dreadful - what limited energy I had is drained away and pain starts to build quickly by the late afternoon. But classes for adults are mostly in the evenings.

When doing a photography job (often food related), I tend to spend whole days, preparing, shooting, changing lenses, and then editing. All in one big flow of tight focus. It can be exhausting, even for healthy people.

Just resting, doing nothing, is truly boring. Plus it is psychologically exhausting - I end up berating myself for my illnesses (none of which are ‘my fault’), and driving myself into depression. I have to keep my mind busy.

Finding a balance

I’m still not good at this.

Every now and again, I’ll have a marathon writing session and forget about standing up for breaks, or say yes to teaching a three hour evening class, crochet like a madman, become focused on a photography project, or spend too much time standing in the kitchen, or even game the day away. Invariably I end up paying for the deep dive for many days afterwards.

But I’ve found there is no perfect, sustainable balance of work, hobbies, and rest - my energy, pain, and inspiration levels fluctuate every day.

The 20 Minutes A Day project was very helpful in showing me I don’t always need that deep concentration and flow state to make progress on projects, and enjoy my hobbies.

On days where I must be physically active - doctors’ appointments, physio, gym, water aerobics - I try to keep extra physical things to a minimum. No cleaning or cooking, but instead small spurts of writing, crocheting, meditation, light stretching in breaks, reading.

On the other days, I intersperse physical activity with non, and that seems to allow me to work longer into the afternoons. As the day goes on, I try to do more restful things. I’m still not good at sticking to limits and taking breaks though!

I’m still learning to pay attention to my body and give it what it needs. Some things that I’ve found help include:

Plan for things in advance (menu planning is hard when you have a strong-willed stomach with a mind of its own), and allow enough time to prepare.
Say no to evening commitments, all-day events, things I really don't want to do, or that will over-tax my energy reserves.
Take breaks and limit time spent on any one thing - I'm still a beginner at this.
Have a good variety of things to fill the total 'resting' times so my mind is active - audiobooks, webinars, podcasts, audio language courses, StarCraft competition videos, anime, etc.
Prioritise, not just for importance or urgency, but also for enjoyment - do the things that make me smile and feel good, because this fills a little back into the energy bucket.
Leave my phone (and tablet) out of the bedroom so I'm not tempted to peek at it and disappear into the internet, whenever I wake up in the middle of the night (regularly).

How do you do it?

Are you a spoonie multipod? How do you balance your many interests, work, exercise with resting and not getting bored or depressed? How do you remind yourself not to get lost in a task?

Useful essential oils

Thu, 26 May 2016 00:00:00 +0200

Back when I had a nine or so month bout with urticaria (hives), I tried all sorts of things to soothe the itching, to prevent infection, and to speed up healing the skin.

I’ve since used a combination of oils for psoriasis itchy welts, shingles, acne, grazes, boils, and to lessen the after effects of dermatillomania (skin picking). I’ll occasionally use them to help reduce the headaches from sinusitis, to warm up muscles during a massage, and to make me feel better on a down day.

The medical research is mixed, although there have been quite a number of studies - search for essential oils on PubMed to see a huge collection of both good and bad publications. [1]

There are definitely compounds in some oils that are useful in isolated testing in laboratories - tea tree, geranium, clary sage and eucalyptus oils do contain antibacterial / antimicrobial properties [2], [3], [4], [5]. Tea tree has been shown to be anti-fungal [6] , decrease the rash from an allergic (histamine) response [7], and decrease the inflammation of gingivitis [8].

Aromatherapy and essential oils are often used for relaxation and to help with mild sleep disorders [9]. Rosemary oil has been found to increase physical activity (reduce tiredness) in mice [10]. Sniffing both lavender and rosemary oils decrease cortisol (a stress hormone) in people [11].

People can respond badly to essential oils, with many causing dermatitis, especially lavender, tea tree, peppermint and ylang-ylang [12] . These are all the oils I use regularly!

Important - Please do a test patch to see how you respond to the essential oils before treating or massaging any large area.

Also note, it’s best to dilute the oils in a carrier oil.

Oils for sinus problems and headaches

My go-to headache oils are peppermint and eucalyptus.

Peppermint massaged around the temples and above the eyes helps to open up the sinuses and make it easier to breathe. Eucalyptus oil on a cloth works similarly, or in a warm vaporizer, especially at night.

Occasionally I’ll add tea tree because I was diagnosed as having chronic sinusitis from a fungal allergy. A cotton tip with the tiniest amount of tea tree oil, dipped into a salt water solution to use in a neti pot does seem to help.

Alternatively, I’ll steam my head with a combination of tea tree, peppermint and eucalyptus. I usually add lavender oil because I hate the smell of tea tree!

Skin healing oil for acne and boils

On large pimples and boils, I tend to use tea tree neat (not diluted). I’ve tested this on my skin and I don’t react badly, but many people do. It dries the skin out and the antibacterial properties prevent further infection.

For a less drastic treatment, a combination of essential oils in a rosehip base oil is good - tea tree, lavender, geranium, chamomile, rosewood (for scent).

If my skin is cracked and dry skin, calendula base oil is more moisturizing and also helps broken skin heal.

Mixing this ‘healing’ oil into some hand cream helps heal the sides of my nails - it’s a little too oily when used without the hand cream.

Once my the laparoscopy cuts had healed over, I used this essential oil mixture after hysterectomy to help the cuts on my belly recover more quickly and scar less. My poor belly button has been cut into six times now, so it needed a bit more love and care. And still does.

Anti-itch oils

If I’m itching without any visible cause or on the occasional psoriasis plaques, I use the acne skin oil. The anti-fungal and anti-inflammatory tea tree oil seems to help.

When I had hives over my whole body, I got more creative. I included a number of scents that I loved as well, because being permanently covered in red, bumpy, itchy welts is very emotionally upsetting.

For a moisturizing and soothing oil, applied several times a day I followed this recipe:

40ml grapeseed oil (base + preserving properties) 40 ml almond oil (base) 30 ml rosehip oil (base + moisturizing properties - especially good for dry skin) 30 ml wheatgerm oil (base) 10 ml calendula oil (skin inflammation + healing of abrasions) 8 ml 3% chamomile in jojoba (the best oil for skin inflammation, itchiness) 20 drops 3% rose in jojoba (scent) 10 drops lavender (antiseptic) 5 drops bergamot (for aggravated skin) 5 drops jasmine (scent) 5 drops tea tree (anti-inflammatory, smells disgusting) 5 drops neroli (scent) 5 drops geranium (antiseptic) 3 drops patchouli (scent) 3 drops juniper (scent)

This made quite a lot - I used it all the time, over my whole body.

I also used a cooling spray with some essential oils for when the itching was too severe:

75ml distilled water 25ml liquid aloe (moisturizing, cooling) 10 drops 3% chamomile in jojoba (anti-inflammatory) 2 drops 3% rose in jojoba (scent) 2 drops lavender (antibacterial and scent)

I kept the spray bottle in the fridge - it’s lovely in summer.

I also took cool baths using a cotton bath bag filled with: oatmeal or oats, 8 drops calendula, 6 drops 3% chamomile, 4 drops bergamot, 4 drops lavender, 2 drops 3% rose, 1 drop patchouli. I let this sit in the bath as it was filling up, massaged it as I was soaking, and then used it like a soap.

Oat ‘milk’ is surprisingly soothing to itchy skin!

These days, I’m more likely to drip lavender, chamomile and calendula oils into a warm Epsom salts bath.

Massage oils for fibromyalgia

My muscles, or rather the edges of my muscles and my ‘tendons’ always hurt, thanks to the fibromyalgia. I’ve found massage to be the best way to combat this. Although it’s the massage that helps the most, including my favorite scents helps the psychological aspects of chronic pain.

A mixture of black pepper (warming), wintergreen or camphor (warming), geranium (scent), lavender (scent), rose (scent), ylang ylang (scent).

I’ve recently found an arnica massage oil base, fabulous for getting rid of bruises faster and also seems to warm the muscles.

Also see the other things that reduce fibromyalgia symptoms.

Home cleaning and oils

A few drops of tea tree in floor cleaning water or on a cloth used for cleaning the kitchen can keep the bacterial and fungal load lower. I use a spray bottle with white vinegar and tea tree as a surface cleaner.

But do keep your cats and other pets away from it until it has completely dried. Terpenes in higher concentrations, such as in undiluted tea tree oil, are toxic [13].

Some drops of my favorite scent, lavender, in the rinse water when washing clothes, or mixed in distilled water and sprayed over clothes always makes me smile. You could put a few drops in with the clothes in a dryer, if you use one.

Neat eucalyptus oil is a fabulous label remover. It also helps remove the residue from plasters stuck to your skin - wash thoroughly with soap afterwards though, as it can be quite irritating on the skin.

Aromatherapy uses

Occasionally, I’ll use the oils ‘traditionally’, in an oil burner.

These are my standard blends.

Relaxation - sandalwood, rosewood, lavender, ylang ylang
Sleep - chamomile, lavender, majoram
Wake-up / concentration - orange, lemon, rosemary, basil, ginger

Are essential oils useful or placebo?

If you use them, which ones and how do you use them?

Methotrexate intolerance

Mon, 16 May 2016 00:00:00 +0200

My GP has agreed with me - methotrexate isn’t working.

In fact, it’s made my life a lot worse through the headaches. Movement and sunlight leave me in whimpering heaps, worse after taking each weekly dose.

It’s coming into summer here, and each day has been so horribly bright. I’ve always been sensitive to bright lights, but didn’t need to have blinds down just to get through each day.

On the days when my headache isn’t so bad, my vision is doubled and I’m very dizzy.

I’m effectively housebound.

I have to force myself out to get to physiotherapy, blood test and doctor appointments. It’s been good that my partner has been around to give me a lift so often.

Take a pain killer? I wish I could.

Novamin for migraines shouldn't be taken with methotrexate.
NSAIDs like ibuprofen, shouldn't be taken regularly with methotrexate, or really at all when kidney function is impaired, as with me.
Paracetamol hits the liver, so should be avoided close to the methotrexate tablet.
Codeine by itself would be ok, but it's paired with paracetamol plus I build tolerance quickly when I take it regularly.

Plus it’s not good to gulp down lots and regularly of any pain killer.

Rheumatologist’s advice?

Eat lots of ibuprofen and take a proton pump inhibitor to prevent the stomach ulcers you would definitely develop as you are on methotrexate. Impaired kidney function? So what?

Argh! Time for a new rheumy.

But headaches are a subjective measurement - doctors can’t see or measure them, and they also can’t objectively measure their impact on their patients’ lives.

Rising CRP levels

My CRP has always been high. Not crazily high, but unhealthily high. Consistently high.

When they gave me 20mg of prednisolone in February, both my ESR and CRP levels went to normal, for the first time in my life. This was one of the diagnostic criteria which knocked out ‘fibromyalgia’ as the diagnosis - fibromyalgia doesn’t respond to cortisone.

The allergic reaction to sulfasalazine spiked the ESR and started the CRP rising again.

When I started methotrexate, they were both still a little raised. It takes 4-8 weeks to feel progress after starting (less joint pain and stiffness), but it should be visible in blood tests sooner.

Subjectively, my joints and stiffness remain as they were before starting all treatments. The only improvement is with the synovitis in my wrist, which is probably because of the 5mg prednisolone maintenance dose. My eyes are most definitely worse.

Both blood values should have dropped both to normal by now (I’m at week 13), if MTX was actually helping.

The ESR is normal, but the CRP is steadily increasing, at each blood test. It’s nearly back to my normal high levels.

Thankfully, this objective measure shows that MTX is not working for me.

In fact, methotrexate doesn’t help psoriatic arthritis (if that is my spondyloarthritis type as the doc initially guessed) or ankylosing spondylitis.

Now I need to find a new rheumatologist, and get my medication changed or stopped.

This is not an easy thing in Leipzig, Germany. There are two hospital departments for rheumatology inpatients, one clinic for outpatients (the one I have to leave), and few other options. I may need to look in nearby cities - crazy! I’ve already done this once to find competent endometriosis gynecologists and surgeons.

My GP doesn’t want me to stop either the methotrexate or continue tapering the prednisolone without a rheumy’s supervision.

A bit of searching, and it seems that biologics are the next step in treating non-responsive spondyloarthritis, perhaps infliximab.

From my stays in the rheumatism department, starting biologics is highly controlled, and done only through the hospitals. But they refuse to let you start unless you have an outpatient rheumatologist lined up to monitor your progress and administer future doses, which are required regularly (weekly / fortnightly / monthly).

Wish me luck in finding a local rheumatologist, one that won’t ignore my nephrologist’s advice.

[Update] - I got in to see someone within two weeks, mentioning that the referral is because of an intolerance. It was an interesting visit - more details in a future post. Loved that the new rheumy said:

You can't die of rheumatism, so if a medication is causing such terrible side effects, stop taking it.

Just don’t do that with prednisolone!

What next?

If you have experience with coming off methotrexate, or with the next-step medications used in spondyloarthritis, I’d love to hear your thoughts and advice.

Things I can do in 20 minutes

Mon, 09 May 2016 00:00:00 +0200

A lot of people swear by repeated blocks of 20 minutes for powering through work tasks with the Pomodoro technique.

For photography work, this doesn't work for me. Also, for most of my writing. When I get into a work task, I often get into flow. In those instances, it's sometimes good for me to just keep going, but I know I'll pay for it later.

For non-flow tasks, like email or administrative tasks (filing, taxes, blergh), 20 minute blocks are often too short.

But I find 20 minute blocks perfect for all sorts of non-work tasks, and especially for making regular progress on larger creative projects.

I don't often set a timer, except for tasks where I could get carried away. Too much cross stitch or crochet can end up hurting!

What things do I do in 20 minutes?

Hobbies

Stitch two strands in my current cross stitch project.
Crochet one granny square for my blanket (although, I usually leave this project for doctors' waiting rooms).
Crochet one row in my ripple blanket (it's finished now, *pout*).
Crochet a few rows in my shawl.
Draft or polish a blog post (tips to get started blogging for patrons).
Take a photo of something in my balcony garden, the cats, or something in the house
Edit a few photos.
Read a chapter in a novel (it's hard to stick to just one!)
Play piano - short sessions are better for re-learning piano, and animated gorgeous visualisations make it more fun to practice, even if it is just piano scales.
Run through a word list for learning German or Japanese.
Do a few exercises from my German or Japanese books.
Watch an episode of anime (learning Japanese at the same time. Really!)
Listen to a podcast or audiobook.
Work through an exercise in one of the courses I'm following.
Do an exercise from the Right to Write.

I find 20 minutes too short for most larger patchwork and sewing projects. Plus the setup time can be longer than this!

Health

Stretch.
Write in my journal.
Write an email to a friend, or package up a present to send to them by post.
Meditate.
Do my foot exercises (I'm following the program from Whole Body Barefoot by Katy Bowman).
Do some tai chi, yoga or Wii Fit.
Massage my arms or feet with a ball.
Put drops in my eyes - I have terrible trouble with this, so it takes about 15 minutes.
Take a bath or a hot shower.
Have a foot or hand bath.
Steam my head and sinuses.
Go for a walk.
Have a cup of tea and perhaps a sweet treat.
Call my mum (this happens almost daily for my peace of mind).

Cooking

Make the dough for a loaf of bread.
Make a cake or cookies and pop them into the oven - my favourite cake is an orange cranberry bundt that freezes perfectly.
Prep veggies for a roast.
Make a curry, chili, pasta sauce, goulash, or another stew (left overs are the best!)
Make and cook meatballs, then freeze them.
Make popcorn on the stove.
Can some quick vegetable pickles or make a bowl of ramen soup.
Bake cookies from frozen and then sliced dough.
Make homemade ice cream (two 20 minute blocks, a day apart).
Make some jam or cordial and bottle it.
Set up a batch of mead, cider or ginger beer, or bottle a finished batch.
Make pancakes or okonomiyaki.

Home

These are not enjoyable, so I try to get as much done as I can in 20 minutes.

Vacuum one or two rooms thoroughly - necessary when you have two very furry cats.
Clean the bathroom (excluding the shower).
Scrub the shower and bath tub.
Dust the reachable surfaces.
Do the mending.
Hang up the washing, or put it away.
Water the pot plants on the terrace.
Pull some weeds (unfortunately, plants in pots still grow weeds).
Deep clean the kitchen benches.
Descale the kitchen appliances.
De-fur the cushions, chairs and cat climbing tree.
Throw out a handful of things to make life simpler - paper, clutter, irreparable clothing.
Write the weekly menu and shopping list.

What things do you regularly break into 20 minute blocks?

Dealing with high pain days

Tue, 19 Apr 2016 00:00:00 +0200

I’ve been struggling with the side effects of methotrexate for the last nine weeks.

Nausea hasn’t been much of a problem, thankfully. Drinking a lot of water helps a lot.

But, the Headaches are hell.

They easily trump my monthly migraines and regular sinus headaches. I can forget about moving when they all occur together.

I get one day of doubled vision and dizziness - on this day, I can’t do much. My head doesn’t hurt on this day, but it’s not overly safe for me to be out and about, or doing too much about the house - I’m a big klutz.

Following that, the headache arrives, usually before I’ve woken up. It sticks around for days before fading, until the next week.

I’m hoping the side effects will decrease over time as my body gets used to the medication.

But in the meantime, I try to make my high-pain days as enjoyable as possible.

Many of these tips are logical, easy to say and hard to do. But even a baby step towards the full ‘doing’ is great progress.

Minimize stress

Avoiding stress is one of the most important things for headaches of all types.

There are a bunch of ways you can reduce stress immediately - take a hot bath, read a good book before bed, drink a cup of tea, eat a piece of dark chocolate, meditate, go for a short walk, stretch, listen to your favorite music, cuddle someone or your cat, sit in your garden. Anything that makes you smile.

If you are as forgetful as me, write a list of 30-50 small things that make you smile and relax. Post that list somewhere visible, like in the bathroom. You’ll see it when you feel overwhelmed and it’ll remind you to take a few minutes to relax and smile.

My list of activities were small and simple ones I could enjoy, whether I was in pain or not.

For longer term stress management, the most oft given advice is to give up or minimize commitments and relationships that don’t bring you joy. I’ve only taken baby steps in this area, but even with such occasional and small changes, I’ve seen good results.

Live in the now

For years, I’ve been working on not dwelling on the past. Many of us with chronic illnesses long for the times when we could do more, when we had less pain.

Although it makes logical sense to say “you can’t change it, so don’t wallow in it”, actually not focusing on the past is a lot harder.

I’d replay conversations, classes I’d taught, exams I’d sat, beating myself up for how badly I’d performed. This isn’t healthy, and doesn’t change anything. I started working to reduce this bad habit 20 years ago, and I’ve made reasonably good progress.

For me, it’s harder to ‘let go’ of the things I’ve ‘lost’ to illness and cPTSD. But I’m working on it, every day.

Worrying about the future is similar. I used to catastrophize, a lot. I’d look into the future and play through conversations, situations and events to terrible endings. But they never happened.

Future plans I’d worked on in great detail, to account for all kinds of outcomes, almost never happened either - wasting a lot of time and energy, and piling on stress.

Using my list of quick relaxing things to do helps pull myself back to the present.

Listen to your body

I’m an over-deliverer, and I bet you are one too.

Like so many who have chronic illnesses, we push ourselves past our bodies’ boundaries to make others happy or meet work commitments. We pile stress on ourselves constantly and ignore the cries of our bodies - worsening symptoms, pain and exhaustion.

Fighting to do more than is needed is the worst thing you can do on a high pain day - it will make the pain both worse and stick around longer.

Slow down, relax, smile, and give yourself a chance to heal and recover.

Rest

Don’t fight your need to rest. And don’t beat yourself up about it too.

This is the hardest area for many - we compare our need for rest to healthy, normal people. And we always come up short.

If you feel better after a nap, take one the next chance you get.

After a taxing procedure, test or operation, don’t push yourself to be active too soon.

I heard time and time again, in person from healthy people - you’ll be 100% after a laparoscopy in a few days, healed after a hysterectomy in month. But these are the exceptions. Most people take longer, but perhaps hide that they are struggling.

It took me 3 months to recover from my last laparoscopy in 2008, and over a year for the hysterectomy in 2015 - I have other illnesses that are badly affected by such procedures. When I gave in to pressure to get ‘out and about’ when I really needed to rest, it knocked me flat for a week or more.

These days, I listen to my need to rest. Well, I listen a little more than I used to.

I go to bed earlier, so I can get in my 10+ hours of sleep, instead of staying up past midnight. I say no to or cut short some commitments on high pain days. I regularly become a couch potato, surrounded by heat packs and my cats, and allow myself to nap. It makes the headaches much more manageable.

Drink and eat well

Listen to your body and find out what it reacts well to.

Drinking 2+ litres of water helps prevent the nausea side effect, and decreases the number of migraine headaches I have. Water is good - drink more of it!

A cup of coffee can take my headache down a notch or two at times, especially if it’s a tension headache. Valerian and chamomile also help a bit.

Heavily oily foods, lots of sugar, prepared meals or meals using highly processed packaged ingredients seem to make my headaches worse. These days I cook from scratch, limiting oils and sauces. Of course, I don’t cook every day - I make larger batches and freeze portions for high-pain days.

Get support and comfort

Hiding how you feel and pushing yourself to perform is a recipe for even worse future health.

It’s also a recipe for relationship destruction, as you’ll distance yourself to hide your pain. Been there, done that. Hard not to keep doing though.

Tell someone who understands you how you currently feel, ask for help, or just vent. Ask someone to do some cleaning, cook a meal, keep you company, give you a hug or massage your neck (or feet).

Online communities are good when you don’t have anyone locally who can empathize. Alternatively, reading blogs or forum posts by people who have the same illnesses, symptoms or troubles as you is surprisingly comforting.

Most importantly - don't beat yourself up

It’s not your fault that you are ill, that you get terrible headaches, that you have side effects to the medications.

You are not to blame.

Beating yourself up because you feel ill will make you feel so much worse.

Would you berate your best friend in the same way if they had a painful day? No?

You don’t deserve to be told these things either, especially by yourself.

Take good care of yourself, especially when you are in pain.

What do you do to enjoy or manage a high pain day?

Conveyor belt health care

Sat, 26 Mar 2016 00:00:00 +0100

I’m sure you’ve experienced it before.

You wait months for an appointment with a specialist, then an hour or more in the waiting room. But less than 10 minutes after you are shuffled into the doctor’s room, your appointment is over.

Perhaps you leave with a few (new) prescriptions, and a little encouragement to ‘be more active’ or ‘try to relax’.

Having several chronic illnesses that required years to get a diagnosis, I’m more than experienced in this.

There is not enough time taken to explore your entire health history, or the overview and interactions of your chronic conditions and medications.

Your concerns aren’t listened to, or are dismissed with an ‘I am a doctor, and I know better’ attitude.

You feel like you are on a conveyor belt, to be seen and ‘treated’ with as little time, thought and effort as possible.

I’ve had this happen a lot in the last few months, most recently this week.

Warning, long rant post ahead!

I should say, not all doctors are like this.

When you get a doctor who takes their time, considers your entire health background and talks with other specialists, hang on to them - they are worth their weight in gold!

Allergies disregarded

In February I had concerns with sulfasalazine. I mentioned it’s very close to aspirin, and I’m allergic to salicylic acid, both internally and topically. The doctors said it was perfectly safe for me, and no where near close enough to aspirin to cause any reaction.

Turned out it was too close, and the allergic reaction appeared when I started on the full dose. I had my eye out, and luckily caught it early.

Not reading correspondence and results

I always prepare results and letters from other doctors, and where necessary my pain diary. Most doctors flip through them before the appointment. This time, not so much.

The rheumatologist was surprised that my GP had started me on methotrexate (MTX) because that’s a rheumatologist’s domain. Until I mentioned the hospital had requested it in their release letter (in front of him), and pointed him to the regular blood test results done by the GP.

Not thinking outside their speciality

Many doctors don’t like working or even thinking outside their fields. This one is no different.

I’d asked what antibiotics were ok to use with MTX when an actual infection develops (not just inflammation), because many must be avoided. The response was that chronic sinusitis should be referred to an ear-nose-throat specialist.

Been there, done that. ENT doc said nothing can be done - it’s most likely due to an inflammatory disease or a fungal allergy.

Rheumatologist shrugged, but didn’t suggest any antibiotics.

Luckily, I have a good GP. So I let that slide.

Dismissing pain or other symptoms

The most striking experience I’ve had, was when an endometriosis surgeon dismissed adenomyosis pain as imaginary because I was ‘too young to have it’. The next endometriosis surgeon found I actually had an awful amount of diffuse adenomyosis.

My rheumatologist’s next question this week was about pain.

He was surprised that I was averaging a 5-6 pain level every day, and it was slowly increasing.

Solution? Continue for the time being on a stable dose of 5mg prednisolone. I had suspected this would happen.

Unfortunately, he dismissed the headache pattern that appears after every MTX dose as imaginary, until I pointed him to the pain and migraine diary that I have to keep for the pain clinic.

Dismissing other doctors' advice

After asking what I take for the headaches, he disapproved of my use of low-dose codeine/paracetamol, even though I take one tablet, once or twice a week, toughing it out most of the time.I’ve taken this medication since I was 16.

It’s also the medication that the pain clinic said was most appropriate for headaches, considering my kidneys and current medication interactions.

Prescribing inappropriate medication

Instead, he suggested regular, daily ibuprofen plus a proton pump inhibitor (pantoprazole) to protect my stomach, because there is a high risk of developing a stomach ulcer when you are on MTX.

When it was discovered I had dodgy kidneys back in 2000, I saw a very good nephrologist. After monitoring me for several years, he made me promise not to have any strong dose NSAIDs, and avoid even the low dose ones, like ibuprofen or dicofenac, unless absolutely necessary. And then, only take one ibuprofen tablet for a couple of days, then stop.

I reminded the rheumatologist that I had very limited kidney function, that I have no redundancy, and that I was concerned about the strain that daily ibuprofen could put on them.

Rushing an appointment

He smiled as he pushed me out the door with a handshake, saying ‘it will be fine’, that I should ‘stress less’.

No chance to discuss it further, nor to discuss the other side effects of MTX I had wanted to ask about.

The importance of researching new medications yourself

I didn’t feel comfortable with regular ibuprofen, and it was the first I’d heard of the proton pump inhibitor (PPI) class of medications.

Off I went to sift through PubMed, medication info sheets and interaction databases.

From what I read, I’m comfortable with one ibuprofen now and then, to manage extreme flares of the costochondritis or sciatica (part of spondyloarthritis), but away from the MTX dose. My kidneys are being monitored regularly because methotrexate alone can damage them, so any further damage will be quickly caught.

Beware of medication interactions

I was surprised about the research on PPI medications interacting with methotrexate.

In the past, this combination was routine. PPIs were prescribed to prevent and treat the stomach ulcers, nausea and reflux appearing as common side effects of MTX, especially when taken in tablet form.

But studies from 2012 onwards have urged doctors to stop prescribing these medication together.

PPIs stop methotrexate from being eliminated properly through the kidneys. Which means it builds up in your system, and there is a high risk of MTX toxicity and kidney damage, even in people with healthy kidneys.

Admittedly, I’m on a low dose of MTX, and most of these studies were done with high level doses for cancer chemotherapy treatments. But I believe the combination is too much of a risk in someone with already damaged kidneys.

So, for the time being I’ll skip the new medications and see what my (good) GP thinks.

What's the most frustrating appointment you've been to?

This was by far not the worst appointment I’ve had, but it wasn’t a good one. It’s made me consider finding a new, more up-to-date rheumatologist.

Tell me about some of your bad appointments in the comments below - it’s good to vent now and then!

Slow and steady work gets results

Fri, 18 Mar 2016 00:00:00 +0100

Going into hospital was fantastic for getting loads of work on my crochet projects done. I finished one project, hooked through more than 30 squares for my blanket, then started and finished a warm ripple lap blanket for mum.

Cookie loved the cuddly red and white blanket, so it got shipped to mum along with a lot of cat fur.

Reading or writing wasn’t an option in hospital with chatty room mates, but I could talk and crochet at the same time. The hospital staff loved seeing the blanket grow quickly, but were a bit horrified to see it complete at the end of my second stay.

At home though, there is work to do. Photo assignments to shoot, cooking, washing, cleaning, shopping, gym and physio to go to, and so many doctors appointments and tests to attend.

After so much activity plus the battle with the ongoing methotrexate side effects and migraines, I am pretty dead. It’s meant any crafting got put aside.

I have a couple of projects that need to get done - one a promised present for a 5 year old.

The intended recipient was upset when her younger sister received a quilted cross-stitch hedgehog pillow I’d made years ago for Christmas, and requested a dinosaur one for herself. Not just any dinosaur - it must be herbivorous. Preferably a brontosaurus.

There are very few dinosaur cross stitch patterns out there, especially of dinos other than tyrannosaurus rex. As I’m not comfortable making my own patterns from scratch, it took weeks to track down a cute-enough brontosaurus for a 5 year old. Then a few more weeks to choose a colour palette and make a start.

As cross stitch is hard on my hands and wrist, I procrastinated.

Then I did a couple of marathon sessions and hurt my hands. And procrastinated some more.

I was happy when Michael Nobbs started a gentle challenge over on Sustainably Creative - just20 minutes a day on one creative project</a>.

The accountability provided just the prodding I needed to get moving again, and keep moving forward, a little each day.

Although, I have not done exactly 20 minutes each day, rather stitched until the end of my thread.

We are half-way through the two week challenge, and the dinosaur cross stitch is finished. The next step is to purchase quilting materials and turn it into a quilted pillow.

With a bit of luck to find appropriate quilting fabrics tomorrow, and 20 minutes of work per day, it will be ready for an Easter present next weekend.

Then I can start again with a green stegosaurus - I have another hedgehog to gift next Christmas and I don’t want to be the cause of any fights between the sisters!

The accountability and excitement of seeing what the other challenge members get done each day is so useful to get past my terrible procrastination habit.

Some of the other members of the #20MinutesADay challenge have written about it at various times:

Cathryn - on a gentle by intentional start to the year.
Laureen - on persisting and allowing creativity to win, even when going for walk.
Michael Nobbs - using 20 minutes for [making progress gently](https://www.gogently.co/library).
Josh - on sychronicity and a challenge.

Getting past the procrastination on the cross stitch has had the happy and surprising side effect of prompting me to work a bit on the other presents in my crochet and sewing queue.

What creative projects are you working on? Do you do a little each day? Do you struggle with procrastination?

Starting methotrexate

Thu, 25 Feb 2016 00:00:00 +0100

There are heaps of scary stories about methotrexate out there - massive nausea problems, hair falling out, bad ulcers, pneumonia and bronchitis, and big liver problems (especially if you drink).

It’s nerve wracking to someone just starting on it, especially after an allergic reaction to sulfasalazine.

I’ve just taken my second tablet - methotrexate tablets are usually taken once a week.

I’ve been very cautious.

Better to start when inflammation is controlled

Ideally, I would have been on a controlling dose of prednisolone when starting MTX. But, with the few ‘wasted’ weeks of sulfasalazine, the prednisolone has been tapered to a level where my pain is back, and there’s loads of inflammation visible in my blood tests.

しようがないな.

Be 'healthy' when you start methotrexate

First, I got over the flu I picked up in the hospital, quarantining myself doing anything in public that wasn’t absolutely necessary - no gym, no water aerobics, no shopping, no social outings, no visitors.

This was to clearly recognise any flu- or pneumonia-like symptoms, as this could mean you can’t tolerate MTX.

For a week after taking the first tablet, I stayed in my self-imposed quarantine.

Support the liver and kidneys

No alcohol - The info pamphlet and so many websites said don’t drink before and when taking MTX. Some countries guidelines are a bit more flexible. But I decided to make my liver as clear as possible to see what the methotrexate did in blood tests. Once the liver shows no problems and is stable, then I’ll reintroduce a glass of home-made mead in between the tablets.

No pain killers - Supporting the liver function also meant no paracetamol-based pain killers (the only one I had left - ibuprofen and novamin are both to be avoided on MTX). This has been very very, with the climbing pain from prednisolone withdrawal and the headaches (now a constant 6, with spikes to 9). Again, once the liver shows it’s stable, I’ll carefully restart pain control.

Not being allowed to take novamin will be tough - nothing else has had an effect. Plus it really helped the endometriosis pain. Bah.

Drink lots of water - For the migraines, I had been drinking around 2L of water per day, so my kidneys are doing well.

Timing methotrexate

My dose is one 15mg tablet, with no tapering up.

The pharmacist said to take methotrexate an hour after food, and nothing milky when or after taking it.

The doctors all recommended to take methotrexate at night so that if you do feel nauseous, the worst will pass when sleeping. I have only felt my ‘normal’ level of nausea, thankfully. Although, I am noticeably less hungry.

They also recommended no folate for 24 hours before or after - folate blocks methotrexate and vice versa. So no multi-B vitamin for those two days. After 24 hours, a 2mg dose of folate is meant to lessen or stop many of the common side effects.

Some people prefer to take it on a Friday so they can sleep the weekend and side effects away. Others prefer it mid-week, so they are ok for the weekend. As work is nonexistent at the moment, and family visits are usually on weekends, I chose a Wednesday night.

First methotrexate tablet - side effects

I didn’t sleep well the first night, but I think that was mostly anxiety.

The day after, the fatigue hit.

I haven’t felt this exhausted since starting gabapentin. I can hardly even think straight, and even struggle to finish sentences. It blasted away the residual prednisolone energy and turned me into a zombie.

For the next 4 nights, I slept long. Without waking up during the night. Unfortunately, normal insomnia returned before the second dose.

I can’t tell whether the accompanying bad and constant headache is a side effect, or if it comes from my neck. Physio hasn’t helped, so it might be a side effect. I’ve had a few strong migraine-like spikes in the temples and extremely blurry eyesight, occasionally with sparkles clouding my vision.

My balance is iffy at the best of times, but is much worse at the moment.

Nerve pain, numbness and tingling in extremities has made a surprising return. 2008 and 2011 were the last times it was so obvious. No idea if this is a side effect of methotrexate, or perhaps from prednisolone withdrawal (rising inflammation).

Bowel cramping has been much worse. But that can also be due to anxiety, uncontrolled inflammation, withdrawal of novamin or endometriosis playing up.

For a day or so after taking each methotrexate tablet, the thirst has been overwhelming. Normally, I have to force myself to drink to meet that 2L daily quota, but it’s easy to power through 2-3L in the 24 hours following the tablet. Good for the kidneys.

My mouth has been showing signs of developing ulcers, irritated skin throughout. I had ulcers constantly as a teen, so I know I’m susceptible. At the moment, I’m just swishing salt water.

Pain + exhaustion means I haven’t gotten anything done. Writing is impossible. Even crochet is difficult! I have been reading a lot, or rather, listening to audiobooks. And skipping back to listen again and again - what concentration?

Continuing on methotrexate

My first liver and kidney blood test results come in soon. Tests will be weekly for a bit, then fortnightly, then I get to see the rheumatologist.

Providing everything looks good, I’ll be continuing, and hoping that it will stop the permanent inflammation of spondyloarthritis.

Update: first blood test looks good, raised white blood cells from the prednisolone and inflammation markers, as usual. I seem to be subconsciously stressing, so this is welcome news.

How did you react when you started methotrexate?

Did you get any good / bad side effects? How were your blood results?

Finished projects in 2015

Wed, 10 Feb 2016 00:00:00 +0100

I had a lot of non-working downtime in which to recover from the operation and seek out answers for other problems that flared.

Work projects

Teaching was not feasible, with the commute, hours standing, a lot of preparation, and a fixed schedule that has no wiggle-room for fluctuating health.

I was happy to pick up a new photography contract, and sold over 90 photos to fulfill requests. Happily, this project is still chugging along nicely.

I’ve drafted ten group project exercises for language classes, a la “What if you won a medieval village?”. I need to write a few more before sending them out to business and conversational English teachers for testing. It’s not a finished project, but I’m proud of the progress I made.

Language learning

Although learning a language is really not a project with an end, I made huge progress with my German, thanks to the hospital stay and doctors visits. I’m much more comfortable chatting to people both in person and on the phone now.

Finished courses

I must always be learning or studying something, in addition to a language. Having something to keep my mind busy was a must for the recovery time.

Ramit Sethi's Success Triggers course, to combat my procrastination tendencies and build better habits, gave me many insights into how I work, and what holds me back. I revisit this course and the exercises regularly.
Jeff Goins' Intentional Blogging got me writing (if not publishing) more regularly, focusing on more helpful topics.

I can highly recommend both courses, both as a prompt to get moving on projects, writing or otherwise, and to help you analyse your own patterns and habit and make them better.

(note - the links above are not affiliate links, I’m just a happy customer)

Books read

As a child, I read through libraries of books. I was always reading, at school, at home, at night when I was sleeping. But that dropped off. Last year, I set a challenge to read at least 20 books, and I succeeded!

GoodReads tracked the books I read in 2015. Cookbooks count right?

Other ‘projects’ like piano, cross stitching, cooking/baking and even gardening had to be put on hold because of ganglion and inflammation that happened after it was in a bad position during my operation in February.

A new hobby - crochet

Half-way through 2015 I decided to pick up crochet. I had a cheap bamboo hook and some cheap cotton I had picked up in a 100 yen store when in Japan, and hadn’t done anything with them for over four years.

When my wrist got a bit of mobility back after a short course of cortisone, I thought crochet might be a good therapy, gentle movement encouraging blood flow and healing. I was right! As long as I didn’t crochet all day long.

[gallery link=”none” columns=”4” ids=”1200,1190,1192,1199”]

Starting out - I needed to learn the basic stitches, and to follow patterns. So my first projects were dish cloths for the kitchen and face washers for the bathroom. I tried a bath puff, but that absolutely didn’t work, so I let it dry, frogged it (pulled the wool out), and turned it into another dish cloth.

At this point, I realised I was having fun with crochet. So I invested in nicer wool and some hooks that promised to be easier to hold than the straight bamboo for people with rheumatism or other hand/finger problems.

The Addi Swing crochet hooks have been a fabulous investment for me. I have much less pain and tiredness as I don’t hold as much tension in the fingers when I use the swing hooks. Although, if I hook the whole day, I can still easily develop tendinitis. Moderation in everything, including crochet!

I was intimidated by the twist möbius, but in fact, it’s the best thing for someone who doesn’t count consistently - you just stitch around and around, no counting past the first couple of rows. It was good not to have to worry about the edges not being even.

The wool felt a bit scratchy when finished, but after wearing for a week or so, became gorgeously warm and soft.

Next was a basic triangular shawl, using merino sock wool. The colours looked awesome when in the balls of wool - purple is one of my favourites.

Unfortunately, the patches of black and white joined across several rows, so that when finished, it makes the one wearing it look like a Milka cow - purple, with black and white spots.

It’s lovely and warm, so I’m happy to wear it around the house. But next time, I’ll use this colourway for socks.

I felt confident enough to start on presents for mum - another möbius cowl, but this time with a sequin yarn. Not pleasant to stitch with, but I was happy with how it turned out. Although, mum is convinced the colour is brown and not purple - it’s purple I swear!

[gallery link=”none” ids=”1197,1194,1202”]

Then a couple of hats - a chemo cap for winter for my mum, and a more summery sun hat with the same cotton yarn and a new stitch learnt. Unfortunately, I’ve discovered that hats are difficult - it’s easy to make a hat that doesn’t fit. These will probably be sent back to me (from Australia!) to be frogged and turned into dishcloths. If I make hats in future, they will be floppy, not at all fitted.

As the weather became cooler, I started wearing my original möbius cowl full time, so decided it was time to make another möbius cowl.

This time with a softer yarn, and not following any real pattern, with a couple of rows of the cable stitch I learnt for my favourite face washer above.

It looks like I’m addicted to möbius cowls!

Unfinished crochet projects started in 2015

Inspired by Michael Nobbs from Sustainably Creative and his granny square blanket, done in 20 minute blocks of time, I started a summer blanket with a collection of colourful cottons.
Attic24's neat ripple design for a warmer blanket, using a chunky merino/alpaca/yak wool mixture in dark jewel tones.
Venetian cowl with a lighter weight merino and Celtic knotwork buttons.
Another möbius cowl for mum, following no particular pattern. This time with a very light weight summer wool.Finished in January 2016, before the Australian summer ends.

What did you finish in 2015?

I’m battling several chronic illnesses and have very limited energy, lots of pain, patchy concentration, and operations/hospital stays to recover from.

Looking back at the various things I finish or goals I reach each year means I feel positive and accomplished. This, in turn, helps lighten or prevent depression that so often partners with chronic illness.

What projects did you finish in 2015?

What helps or encourages you to finish projects?

Secondary fibromyalgia

Sat, 06 Feb 2016 00:00:00 +0100

With the discovery that I have spondyloarthritis, and that I have had it since childhood, the fibromyalgia was pushed to being a symptom and not a cause.

The pain that most doctors thought was caused directly by fibromyalgia, almost completely disappeared with the cortisone treatment suppressing the spondyloarthritis.

This clearly shows that the fibromyalgia in my body is secondary.

Fibromyalgia is not the cause of my pain.

Fibromyalgia can be a symptom of another problem

Fibromyalgia commonly exists with other illnesses.

My fibromyalgia is a reaction to the constant pain caused by inflammation.

The two underlying conditions causing me to have immense amounts of pain and inflammation - endometriosis and spondyloarthritis - overloaded my body’s pain response system, and allowed it to develop fibromyalgia.

The endometriosis pain is mostly controlled these days by Visanne, after the hysterectomy to removed the most painful part - the adenomyoma.

At the moment, the inflammation in and around my spine and other joints is being suppressed well by prednisolone. The bowel is still a bit of a problem area.

With the two pain sources mostly under control, the muscle pain and some of the exhaustion and fatigue of fibro has gradually slipped away.

Treat the cause not the symptom

I was diagnosed with fibromyalgia nearly 20 years ago, after a barrage of tests provided no definite results.

The doctors believed that I had all over pain, but couldn’t find any cause. So they pushed me under the catch-all diagnosis of fibromyalgia.

But I had a persistent odd result - there was always generalised inflammation in my blood tests.

It was chalked up to be how my body manifested fibromyalgia.

The inflammation itself was never treated. Only the resulting symptom of pain was treated.

Of course, the ‘treatments’ didn’t work very well. They were only for reducing pain.

Had the inflammation been treated, the chronic pain response of fibromyalgia would have been significantly reduced, albeit not necessarily eliminated because of the pain from endometriosis/adenomyosis.

Studies in recent years have shown that fibro doesn’t cause inflammation, instead it’s a brain chemistry imbalance that lets the pain reaction response spiral out of control - central sensitisation.

With the right treatment, what could have been?

If the real cause, the spondyloarthritis, had been treated when it appeared first before I was a teenager, I could have been on an appropriate medication to suppress the inflammation, and stop the subsequent pain decades ago.

I could have continued playing musical instruments and tennis, but instead the costochondritis (a spondyloarthritis symptom) forced me to stop.

I could have had a much easier time at school, university and in the workplace, and not missed so many days to being in crippling pain.

I wouldn’t have had the extreme flare of symptoms which cut short my time teaching in Japan.

It wouldn’t have disabled me to the point of being unable to work in recent years.

But there’s really not much point looking back at what could have been, is there.

I must rebuild my health from this point forward.

My plea to doctors

Don’t ignore a patient’s pain. “It’s just in your head” is not an appropriate first response.

Follow up on odd results that don’t fit the common illness patterns, especially in catch-all diagnoses. Keep chasing new leads.

If you feel out of your depth, reach out to colleagues and specialists. Do refer patients to those who you feel are better able to pin-point the cause of the odd symptoms.

Specialists and test result writers - please write detailed letters to all involved doctors. If there’s a medical information portal, encourage the patients to allow its use - central and accessible patient information makes diagnoses and discussions much easier. Write the findings in plain English too, not just the highly specific medical jargon, to help the patient understand their own illnesses.

Don’t be so quick to put physical symptoms like generalised inflammation, high fevers, persistent headaches, or urticaria under ‘depression’, ‘fibromyalgia’, or some other ill-fitting basket diagnosis.

Encourage patients to ask questions and give suggestions - let them take an active role in the investigation process and don’t shout down their suggestions out of hand. Researchers find new things out about illnesses every day.

Do encourage patients to keep a symptom diary, noting possible triggers and patterns. Also encourage patients to track how they respond to medications, what medication helps with what symptom.

A bad reaction to Sulfasalazine

Tue, 02 Feb 2016 00:00:00 +0100

Certainly not the wished for reaction, but not an unknown one.

It started with flu-like symptoms, a day after my first full dose on Friday.

Massive headache
Sore throat
Running nose and scratchy eyes
A phlegmy cough
Aching joints and muscles
Slight fever (38C)

I thought I’d just picked up a virus at the gym - I’m well practiced at taking on any and all viral infections from public places!

Sunday saw a small rash appear at the back of my neck, easily explained as caused by a irritating velcro seal on my hoody.

But come Monday morning, and I was covered in red spots from head to toe, a few nicely blistered, and feeling like death.

The rash was clearly described in the medication information pamphlet (I’d forgotten about the flu symptoms that appear first).

The rash is the signal to immediately stop taking sulfasalazine, and never try it again.

Severe reaction to sulfasalazine are possible

If further doses are taken, the bad reaction can progress to full blown Stevens-Johnson syndrome, where the skin massively blisters and peels off. Eye and lung damage is a very high risk, as are secondary infections. This is an emergency, typically requiring intensive care.

There are also other serious conditions caused by hypersensitivity to sulfasalazine.

Luckily, I noticed it early, and saw the doctor immediately.

After checking the rash, both the GP and rheumatologist were happy to keep me on cortisone and antibiotics, under a watchful eye for worsening symptoms for a few days, until a bed becomes available in the rheumatology ward at the hospital.

Important - if you develop a rash, especially with flu symptoms, while on sulfasalazine - stop taking it and immediately see a doctor.

Too close to aspirin?

I’m allergic to aspirin, and develop a rash in reaction to the salicylic acid used in some topical skin treatments for acne.

Sulfasalazine is reasonably closely related to aspirin, which could explain my reaction.

Next steps?

It’s back to hospital on Wednesday for me, to let them see the reaction, do more tests to make sure I’m ok, and work out what medication to try next.

In the meantime, I’m keeping my fluids up, resting, trying not to scratch, and using loads of eye drops.

Maybe I will get at least one crochet blanket finished while I’m there.

A new diagnosis, after 30 years of symptoms

Tue, 26 Jan 2016 00:00:00 +0100

A new, lengthy investigation was triggered by an injury from a bad wrist position my wrist during my hysterectomy, last February.

From that injury, I developed a tiny ganglion inside my wrist joint (not on the outside) and synovitis. I couldn’t use the wrist for months, until it was investigated by an orthopedic doctor.

Such a tiny ganglion can be a big problem if it’s in the wrong spot!

Not being able to use your dominant hand for non-strenuous things like writing, typing, brushing hair and teeth, lifting a glass to take a drink, let alone cooking, crafting, cleaning, gardening or piano playing was probably the most frustrating period I’ve been through, health wise.

I never knew just how much I relied on my poor hand!

Ongoing inflammation is a problem

After a course of cortisone, I had a much better range of movement, although the pain remained quite high after I finished the course.

Because of this, and some really high inflammation markers in my blood, I got referred to my rheumatologist. He agreed with me, that with multiple joints with slightly to significantly limited movement and the inflammatory blood results, it was definitely not fibromyalgia.

Follow up blood tests said it was also not rheumatoid arthritis, gout or Lyme disease.

A hospital stay

Here in Germany, when the limits of the out-patient specialists tests are reached without a definite diagnosis, you get sent to stay in hospital.

There, usually barrages of tests are performed after they try to tease out your health history. Mine was more complex than they were used to unraveling, so I had to stay in there for just over a week.

I went in with a pain level of around 9, not being able to see properly, inflammation in my eyes and sinus, severe headache, and limited movement in my spine, fingers, wrist, knee, feet and toes.

The first opinion presented was the easy way out - ‘just fibromyalgia’. That was shot down by the boss of the section, who pointed out that fibro doesn’t actually cause any inflammation. Fibromyalgia is a common secondary problem, being triggered by the pain from the inflammation.

There is definitely an underlying problem.

So he popped me on cortisone tablets, mostly to see how I would react.

Just two hours later and the pain had all but disappeared. The next day, the obvious inflammation in my eye had cleared up too.

It was an incredible feeling, to feel all the pain drain away, leaving only a little muscle soreness behind from all the bracing I had been doing.

Xrays of my spine, hands, feet all said my joints are pretty (not osteo or rheumatoid arthritis), although they were severely limited by the soft tissue not allowing a good range of movement. Bone scan results won’t be in for some time.

The second theory was some kind of inflammatory tissue disorder, like lupus or multiple connective tissue disease.

Then, they seemed to get distracted with my skin issues and forgot a few of the other symptoms. The third theory was psoriasis, or rather psoriatic arthritis, without constant skin involvement.

Final theory

The boss dropped in again, and noted my old costochondritis pain (from age 13), and sciatic pain (from age 11), plus the ongoing bowel and cervical spine inflammation, intermittent skin inflammation, and the newer eye and extremity joint problems, and pushed me up to the umbrella category.

Because the cortisone had worked so quickly and completely, I got a diagnosis.

After about 30 years since the symptoms began!

Undifferentiated spondyloarthropathy

Many doctors prefer to call it spondyloarthritis, because ‘-itis’ means inflammation.

Under this umbrella category are psoriasis or inflammation of the skin and joints, inflammatory bowel disease, spine and chest inflammation, and other soft-tissue inflammatory problems.

It’s like I took a bit of each of the sub-categories.

Which actually means it probably won’t develop into a severe case, unless my body decides to go down into predominantly one sub-category.

Treatment is short term cortisone for severe and acute flares of the illness.

Long term, I’m starting on sulfasalazine and using eye drops as tear supplements.

The aim of the treatment is to get the inflammation in my body down to a minimum.

Inflammation levels have spiked repeatedly and severely over the last few years, according to blood tests, and it is now causing more chronic problems to appear. If the inflammation is allowed to continue unchecked, it could ruin my bowel walls, make joints eat themselves, or even fuse joints together.

Of course, there are therapies and lifestyle changes that will help in addition to the medication. And I have a head start on several!

It's really not in my head

It’s very relieving to finally have a diagnosis, and especially one that isn’t fibromyalgia.

What was the longest time you have searched for answers, before receiving an accurate diagnosis?

When others 'know' more about your illness than you

Tue, 10 Nov 2015 00:00:00 +0100

What do you say when someone tells you how you can easily cure or treat your chronic illness?

I’ve always struggled with this, more so now it’s not in my native language.

I get people telling me how I can fix my illnesses all the time.

But I don’t know how best to respond without hurting the person’s feelings or pushing them away.

How do you respond?

Syndromes and hidden illnesses - "it's all in your head"

When I say I have fibromyalgia, or sinusitis, or endometriosis, or now rheumatism everyone has an opinion about how it is best treated or what causes it.

The common opinion here in Germany seems to be that fibromyalgia is either stress and a psychiatric illness, or muscular rheumatism. That the treatment for is exercise and psychotherapy.

Luckily the doctors no longer have this opinion! Because over the last several years, researchers have found that muscular rheumatism is only a co-morbid disease, and fibro is really a chemical imbalance in the brain that changes how pain signals are processed.

For endometriosis, I usually get told to eliminate dairy and meat, and go on an antioxidant-rich juice diet. Tried no dairy and meat, high fiber and vitamins (and antioxidants) for many years, it didn’t work.

It’s most important to surgically remove the endometriosis, maintain a healthy weight, and take ongoing hormone-suppression tablets to get the endometriosis to a manageable level - it never goes away. I do believe you can reduce the growth rate a little further by limiting extra estrogen intake from conventional dairy, conventional meat, parabens in cosmetics, and hormone disruptors from plastics.

Rheumatism isn't rheumatism isn't rheumatism

Last week, I was diagnosed with a rheumatism that affects joints. I don’t know what type yet - another month or so for additional test results.

When most hear rheumatism they think arthritis. And everyone has an opinion on arthritis, especially older people. While I value and seek out my friends’ opinions because I know they also read research papers, I don’t appreciate advice from 20 to 40 years ago.

Gout treatment has changed in the last 3-5 years

The rheumatologist suspects I might have gout in my big toe in addition to the rheumatism.

Gout is a very old disease. Everyone knows how to treat it, because they have known someone long in the past who had it.

But the incredibly restrictive low purine diet for gout is no longer best practice.

These days, a tasty, balanced, higher-protein diet that encourages maintainable weight loss, plus moderate exercise, is recommended.

Research has shown that a high-protein, high purine diet - one that should make gout much worse - actually improves gout substantially more than the traditional gout diet, which no one sticks to. In fact, a traditional gout diet is terrible for diabetes, and a large percentage of gout patients also have diabetes.

Avoiding beer and fructose-sweetened drinks, losing weight, and maintaining a healthy lifestyle - with a range of foods and regular exercise - is recommended by expert rheumatologists worldwide to treat and prevent gout.

What do you say when someone tells you how you should treat your illness?

Perhaps educate them gently?

I love learning, especially in cases where my previous knowledge is outdated or wrong. When someone tells me about new research, I appreciate it!

So, thinking people are like me, I often try to explain to those with outdated views, that there has been continual research over the last many years. Treatments, medications, and therapies have changed since they learned about the illness.

Unfortunately, I have found that most people hate being told that they are wrong or outdated.

In the beginning, I printed a resources from non-profits, a few research papers and sometimes the Spoon Theory.

But no-one wanted to read anything.

They just wanted to give their advice and feel good about providing you with the information to be cured.

Since then, I’ve found a verbal emphasis on “research in the last couple of years” can occasionally get people to listen.

But it seems few people will accept that they may be wrong, even in the face of current research.

Especially not in a face-to-face discussion where they want to quickly provide advice that will fix your illness, and move on.

You can’t educate stubbornly closed minds.

Nod, smile, and move on?

This has been my standard for a while now, as I’ve been low on energy to try to explain, and didn’t want to hurt people’s feelings.

It’s similar to the standard response to “How are you” – “Fine, thanks”.

No one really wants to know how you are.

So I usually thank them for their advice, and we move on to other topics.

But now I’m faced with being served very unappetizing (and unhealthy) food, because that’s what they truly believe will cure my suspected gout, and they think I’m too young, inexperienced and uneducated to understand this illness.

How do I explain that this food is not healthy for me?

What would you do?

Please do share your stories and your advice!

Costochondritis hacks

Thu, 08 Oct 2015 00:00:00 +0200

After having had an extreme spike in chest pain this week, I used my costochondritis hacks to get rid of the pain in a couple of hours, and made sure it didn’t come back.

This time, my costo has flared thanks to an increase in activity, especially a physio-gym routine and taking on some more photography jobs.

I’ve had costochondritis on and off since I was 13 or so - 25+ years. I probably won’t ever get rid of it as it’s a common co-morbid illness with fibromyalgia.

In the last decade, I haven’t been able to take the normal strong anti-inflammatory medications that doctors usually prescribe for costo flares - NSAIDs are off limit when you don’t have good kidneys.

Doctors don’t have any suggestions, apart from the NSAID medications. So, I’ve had to develop a lot of small ‘hacks’ to both deal with the pain of a flare, and prevent them from occurring.

I need to take more care when the weather changes drastically, from wintery weather to summer heat, and the reverse.

Important - When the costochondritis attacks, it can feel like a heart attack. If you have not experienced it a number of times, please do go to an emergency department to rule out your heart as the problem.

When the costochondritis pain spikes

Heat packs, front and back. Try to use wheat, rice or some other filled fabric packs - I've found that mud or gel filled plastic packs aren't as good - perhaps because the non-plastic packs hold more damp heat?
Sit up or stand straight. Spikes typically hit when I'm lounging on the sofa, with a closed chest. And our immediate response is to close in around the painful spike, but that actually makes it worse!
Breathe deeply and slowly. When a spike hits, you can't breathe - it's simply too painful. But that's the best way to calm down the nerves and spasming muscles. Start to breathe slowly, even if you can only manage shallow. Deepen your breathe over time (I find it easier to start to belly breathe, and then add full-lung breathing when the pain has subsided).
Sleep with an open chest. Hug a pillow to keep your arms (and chest) open, lie on a pillow on your back. Recently, I've found lying face down on a pillow, which also props up my shoulders so they aren't closed, works strangely well.
Lightly massage the painful spots. Mostly to calm the nerves and muscles back down.
Use an anti-inflammatory. If you can, use a light NSAID, like ibuprofen or Voltaren gel, to reduce the inflammation quickly, before it sets in for the long haul.

Sometimes, walking gently around my living room can help calm a bad flare down to a level where I can sit with the heat packs.

Preventing a costochondritis flare

No uneven carrying. Shopping bags, backpacks must be evenly distributed. Sling and one-shoulder bags must be avoided.

No heavy loads. Make more trips when carrying shopping bags, and don’t overload your backpack.

No twisting under load. This is probably the worst - don’t try to pick up something that’s on one side of your body and bring it to the front or sling a bag onto your back - that’s a guaranteed trigger! Face the things you want to pick up straight on.

This may also apply to opening heavy doors (the common type here in Europe) - pull them a little bit open then use your hips and legs instead.

Even opening jars - get a tool to make it easier.

No strong reaching. I’m short. At least, in this country I’m considered short. If I reach for things on the top shelf in the fridge (uneven reaching), or in the kitchen cupboards, I almost always feel a costo twinge. Instead I have to use a step ladder.

Change activity levels or types gently. If you know you will have a higher work or study load, or if you are starting a new physical therapy or class, do it slowly. Ramp up. Or down, if you are finishing something. Any sudden changes in activities can trigger a costo flare.

Maintain decent posture

The costochondritis always seems to hit me when I’ve been slouching. The worst is the slumped over a mobile phone or tablet posture, with tension in the arms and chest as you tap at the screen.

Do chest opening exercises daily. Stretch your chest and shoulders in doorways as you walk through them. There are many exercises and stretches that help prevent costochondritis.

Loosen your shoulders and neck. Because the top of my spine is screwed up (love that C2!), I see a physiotherapist regularly. Recently, she’s been working on my shoulders and upper back, and my chest has felt a lot looser - the costo has been more manageable. Get a semi-regular massage or treatment for solid shoulders/upper back may help prevent a flare.

De-stress

Seriously.

When we are stressed, upset or angry, we close our posture in around our core. We slouch, our head falls forward under the weight of our stress. We breathe shallowly, and hold a lot of tension. We sleep poorly. This is the ideal body and mind state to trigger a costochondritis flare.

Plus, it means we deal worse with the flare when it happens.

Over time, work to reduce the stressors in your life - appointments, work or study load, toxic friends, debt, social ‘demands’ (not the things you really enjoy), other tasks or things you hate. Reduce clutter - it reduces stress! Keep your home clean with a basic cleaning routine, spread out over the week.

Establish some new relaxing habits

Meditation has been shown to reduce pain.
Go for a walk, preferably in a nature-rich area, . This is both relaxing and improves blood flow (and healing).
Take up a gentle hobby that relaxes your mind yet doesn't physically over-stress your body.
Try a relaxing night-time ritual to get more sleep - a bath, no screens, and a relaxing scent.

Your costochondritis hacks?

What things do you do that can drastically reduce or stop a flare? Or prevent one from happening?

Re-finding normal

Tue, 29 Sep 2015 00:00:00 +0200

In the last couple of weeks, I’ve drastically increased my physical activity.

For ‘normal’ people it wouldn’t be much, but for me, it’s a huge change.

At the moment, I go to the rehab-gym once a week, and run through a physiotherapist-designed program of balance work, pelvic and lower back training, arm/shoulder exercises, some leg strengthening and some cardio.

On the first day there, I was astounded by some of the older ladies doing the most amazing balancing acts at the same time as strength exercises. I had enough trouble moving my gaze around when standing still on the balance cushions!

By the fourth time at the gym, I have noticed an improvement in leg strength and cardio. The crunches and bridges are still quite difficult, but I think it’s because of my sore neck. I did have to modify the crunch position to have include neck support (pull the mat/cushion up with me as I curl, instead of reaching straight for my knees).

I’m also seeing the physiotherapist twice a week, and next month add a water fitness class to the mix.

I thought this was a ‘slow’ increase of activity for me, but my body disagrees!

Planning for an increase in activity level

Any change in activity level can cause problems when trying to manage a chronic illness, especially as one as sensitive as fibromyalgia.

That’s why it’s important to start slow.

I thought I did.

I started with a light hour at the gym, when most start with 90 minute sessions. Almost no resistance or weight for any exercise.
I spaced out the start of the gym and the water aerobics class to give my body time to adjust to the new 'normal'.
I scheduled an extra manual therapy session each week to deal with the inevitable muscular fall out. For two days, I can hardly move.
I started taking valerian a few weeks before starting to make sure I slept and had more energy (it helps a bit, but not enough).

New activities cause chaos

For a couple of days after a gym session, I’ve had to make sure my legs and lower back have heat packs regularly applied to prevent bad muscle cramps, and I must take really hot and long showers. Getting in and out of a bath is not possible at that point.

Walking around the flat or around the block helps somewhat, but anything more strenuous has flattened me in bed with a fever. That includes cleaning the house, unfortunately.

Stupidly, last weekend, I helped carry something both heavy and unwieldy up the spiral staircase to my apartment. Hello costochondritis and back cramps! Even with physiotherapy after the gym session to reduce the trigger tension for a costochondritis flare, this one extra activity pushed me over the edge.

When in a costo-flare - no rowing-like movements at the gym during and after.

It takes me two full days to be able to move my legs and arms without lots of pain, and to get rid of the light fever that always seems to arrive after any physical activity.

A long adjustment time

Healthy people would have no problems with one weekly and light gym session. Even a moderate session would probably not have the same impact.

It’s been a month since I started gym, and the fall-out is just now starting to be less after a session. I don’t think it will disappear completely - there will always be some increase in pain and muscle soreness, but I am seeing a slight improvement.

It’s similar to starting any new therapy or medication, I need about a month to start to find a new base level.

So, I suspect I’ll be doing much better in a month.

Or not. As I’ll have started the water fitness class.

Then I’ll adjust to a new baseline again.

How long do you need to adjust?

If you start a new therapy, treatment, medication or exercise routine, how long does it take for you to find your new ‘normal’?

Common illnesses with fibromyalgia - co-morbidities

Wed, 09 Sep 2015 00:00:00 +0200

Fibromyalgia is considered to be a sensitization problem with the central nervous system, caused by our neurochemicals being out of balance.

This means the brain increases our pain response and doesn’t switch it off when the source of the pain is reduced or disappears.

Some people are more likely to develop fibromyalgia than others - there is likely a genetic component that predisposes us to develop it.

Until recently, before the brain-nerve response to pain and our unbalanced neurochemicals were discovered, several other illnesses were thought to be secondary symptoms of fibromyalgia, because they were commonly seen together.

Fibromyalgia is often co-morbid

These other illnesses are co-morbid - they co-exist with fibromyalgia. To make diagnosis more difficult, the symptoms of these illnesses overlap significantly.

Many people have the other illness first, especially when it causes chronic pain. When the brain is sensitized by the chronic pain, fibromyalgia can develop.

People with fibromyalgia are 2-7 times more likely to have at least one co-morbid illness from the list below.

Irritable bowel syndrome and fibromyalgia

Bowel pain, alternating constipation and diarrhea are the defining features of IBS. These are clearly not symptoms of fibromyalgia, and doctors can easily tell these diseases apart.

Up to 60% of IBS sufferers have fibromyalgia as well, probably because the chronic pain of IBS triggers the development of fibromyalgia.

Rheumatism and fibromyalgia

Rheumatic diseases, including rheumatoid arthritis, polymyalgia rheumatica, lupus and others, almost always have inflammation, and inflammation is not a symptom of fibromyalgia.

Because these diseases cause chronic pain and disturb sleep (causing an imbalance in neurochemicals), people who are genetically predisposed to developing fibromyalgia, will develop it alongside their rheumatic disease.

Up to 30% of rheumatism patients have fibromyalgia as well.

Corticosteriod medications typically improve rheumatic illnesses, bringing the generalised inflammation under control, but they do not reduce fibromyalgia symptoms.

Costochondritis

Costochondritis can develop after an injury or viral chest infection and can stick around for a long time. It’s an inflammatory condition, that causes pain when pressing on the sternum and around the ribs. Costochondritis is sometimes found together with fibromyalgia, but it is not yet well understood.

Restless leg syndrome

There is a significant overlap in restless leg syndrome sufferers and fibromyalgia, but the link is not well understood yet.

Myofascial pain syndrome and fibromyalgia

Myofascial pain syndrome and fibromyalgia are so similar that doctors can rarely differentiate. Plus they commonly occur together.

Fibromyalgia causes widespread areas of pain, with many tender points, which change location over time.
Myofascial pain syndrome is caused by trigger points in individual muscles, and these don't change location.

Trigger points are found with tight sections of a muscle, but tender points are found also outside these taut sections. You can generally feel the difference between the lumpiness of a trigger point (with referred pain), and the smoothness of a tender point (where pain is only at the tender point).

Some doctors believe that myofascial pain syndrome is a focal form of fibromyalgia.

Depression and fibromyalgia

If you are in pain all the time, you are likely to develop depression and anxiety. Other illnesses that cause chronic pain also commonly cause depression. Fibromyalgia sufferers have the added bonus of our neurochemicals being unbalanced - those same neurochemicals control our moods.

Trauma survivors who develop PTSD are also very likely to develop fibromyalgia.

Up to 70% of fibromyalgia sufferers are reported to have some form of major depression or anxiety during their life.

Insomnia and fibromyalgia

When you are sick or in pain, you typically don’t sleep well. Fibromyalgia’s unbalanced neurochemicals make that worse - these neurochemicals control our sleep-wake cycles.

A bad night of sleep results in even more unbalanced neurochemicals, and a stronger sensitization of the pain response.

That’s why it’s most important for us to do everything possible to get enough quality sleep. Lack of quality sleep is the top culprit that makes fibromyalgia pain worse for me.

Migraines and chronic headache and fibromyalgia

The same neurochemicals that are out of balance in fibromyalgia patients can cause chronic headaches and migraines, so there is no real surprise that these illnesses often co-exist.

Unfortunately, there is not much research into patients that suffer both migraines and fibromyalgia.

Prolonged viral infections

I have ongoing troubles with this - sinus infections, sore throats, light and temperature sensitivities, light fever, enlarged lymph nodes. When blood tests and sinus exams could not find anything, these were put down to being a symptom of fibromyalgia.

But current understanding suggests they are a separate problem, which may be related to chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) / myalgic encephalitis (ME)

The defining feature of CFS is the ongoing exhaustion, not usually a symptom of fibromyalgia alone. All the other symptoms overlap - generalized pain, headaches and sleep problems. CFS/ME is typically triggered by a long flu-like viral infection.

Up to 70% of CFS sufferers may also have fibromyalgia - they meet the current criteria for diagnosis.

Tempero-mandibular disorders (TMJ)

People in pain commonly clench their teeth together, and can easily develop bruxism (teeth grinding) and TMJ problems. This can often lead to headaches and earaches.

This is perhaps a secondary problem to fibromyalgia or another chronic pain illness, as it is generally a response to chronic pain.

Co-morbidity is a perfect area to research

When so many illnesses are co-morbid with fibromyalgia, it suggests there is an underlying problem. Perhaps it is the unbalanced neurochemicals, a genetic component, central sensitization, or another physical problem.

Developing treatments that target these underlying problems will lead to better understanding of all of these diseases.

What illnesses are co-morbid with your fibromyalgia?

I’ve collected IBS, costochondritis, migraines/headaches, endometriosis, TMJ, PTSD, insomnia, I had CFS in the past, and am currently being investigated for rheumatism, another viral infection and interstitial cystitis. So many other illnesses with fibromyalgia to deal with.

What illnesses co-exist with your fibromyalgia?

Old and new theories of fibromyalgia

Fri, 04 Sep 2015 00:00:00 +0200

As more research is done on specific diseases, our understanding of them changes.

Fibromyalgia is a very common illness. Almost two people in a hundred will develop it at some stage in their life. It is typically diagnosed after ruling out a host of other illnesses.

It’s commonly called a basket diagnosis - it doesn’t show up in almost all tests (except for functional MRI). Fibromyalgia is something we get labelled with when a doctor can’t find any explanation for our symptoms in our test results, it’s diagnosis by exclusion.

However, there are multiple components that contribute to fibromyalgia: genetic, neurobiological (brain chemicals), environmental (allergies), and psychological (especially long term trauma).

But first, the older theories of fibromyalgia, widely believed by both normal healthy people and, sadly, many doctors and specialists.

Fibromyalgia is psychosomatic

If you have fibro, I’m positive you’ve heard very often that:

"It's all in your head."
"You are too stressed / too sensitive."
"Change your thinking and beliefs and you will be cured."
"It's just depression."
"Just get over it."

psychosomatic /ˌsʌɪkə(ʊ)səˈmatɪk/ adjective

(of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress.

relating to the interaction of mind and body.

This is an old theory of fibromyalgia, and it came from the 1800s, although it wasn’t given the name fibromyalgia until the 1970s.

Unfortunately, many older doctors still consider fibromyalgia to be synonymous with hypochondria - there is nothing physically or chemically wrong with your body. That you are thinking yourself into pain, sometimes due to ‘too much stress’.

We are stigmatized as chronic complainers and attention seekers.

And they send fibro patients off to see a psychotherapist. Unfortunately, few are trained in strategies for managing chronic painful illnesses. Or we are prescribed anti-depressants without regard to which ones could actually help.

While there is no question that fibromyalgia has a strong psychosomatic component, as all chronic pain illnesses do, our understanding of fibromyalgia has moved on from a pure psychological root cause.

That doesn’t mean you shouldn’t see a psychotherapist - cognitive behavioural therapy (CBT) and other body feedback and stress management techniques like meditation do help reduce fibromyalgia pain.

It is interesting that several anti-depressants have a positive effect for many fibro patients. More on that later.

Fibromyalgia is rheumatological

The next common diagnosis is of a musculoskeletal disorder that causes chronic pain, like arthritis.

Muscular rheumatism, fibrositis and and fibromyositis are chronic inflammatory problems, affecting the muscles, ligaments and tendons. The pain symptoms of these illnesses and fibromyalgia are quite similar.

While non-specific light inflammation is often found in the blood tests of fibromyalgia patients, there are many others who still have fibromyalgia, but absolutely no inflammation. So fibromyalgia is not an inflammatory illness like rheumatism.

Most patients are still referred to rheumatologists for diagnosis and treatment, although the standard treatments for rheumatic diseases (anti-inflammatory and cortisone medications) have no effect, unless the patient also has some form of rheumatism in addition to their fibromyalgia.

Fibromyalgia is genetic

Most recently, it was discovered there may be a genetic component to fibromyalgia, typically involving multiple genes that control the chemicals in our brains.

Fibromyalgia is neurological

Current fibromyalgia research is focusing on our brains and nerves, now that we can image the brain and it’s chemicals accurately.

One study compared muscle fibers of healthy people and fibromyalgia. They found cellular damage consistent with known neuromuscular disorders, and impaired blood flow to the muscles which can lead the pain nerve cells around the muscle being sensitized - sending signals of increased pain, fatigue and muscle weakness.

A recent study that caused a stir in my pain support groups, found that fibromyalgia sufferers have many more nerve fibers in their hands than healthy people, similar to patients with small-fiber peripheral neuropathy. But others have argued that this could be the result of fibromyalgia, not the cause.

In fibromyalgia patients, the levels of neurochemicals in the brain that signal pain are not normal, leading to us feeling the pain is more painful than it should be. Plus our brains’ pain receptors develop a memory of the pain, become more sensitive and don’t shut off correctly.

The neurochemicals that are commonly out of balance include serotonin, dopamine, substance P, and noradrenaline.

These same neurochemicals affect our sleep, cognitive function, and mood. This more accurately explains the primary symptoms of fibromyalgia - the muscle pain, pain from other stimuli like noise or light, insomnia, exhaustion, anxiety, depression and the fibro-fog.

Years of trauma in childhood permanently damages the production and balancing functions of neurochemicals. The environment around us, our psychological and physical state all affect these neurochemical levels. It would explain why people who have other chronic illnesses or have gone through childhood trauma often develop fibromyalgia.

The classes of medications that work for many (but not all) fibromyalgia patients mess around with our neurochemical levels - antidepressants (SSRI, SNRI, tricyclic), anti-convulsant medications, and muscle relaxants may work for many fibro patients.

Because everyone has a different balance of these brain chemicals, this would also explain why one medication works well for one fibromyalgia patient, and not for another.

Which in the case of fibromyalgia is looking more convincingly to be neurochemical.

A multi-modal approach is best

Psychotherapists and cognitive behavioural therapy (CBT) is useful for reducing the mood and depressive symptoms.
Psychiatrists (or an experienced GP) can prescribe appropriate anti-depressants that may balance the neurochemicals.
Rheumatologists may be able to help with any inflammatory problems that are commonly found alongside fibromyalgia.
General physicians or pain medication specialists can help reduce the sensitization and perception of pain.
A neurologist or GP should also be able to help with sleep problems.
Physical therapists can also help reduce physical pain and postural problems that worsen fibro pain.

What have you been told fibromyalgia is?

Most recently, someone tried to convince me it was muscular rheumatism, and the cure was lots and lots of exercise.

What have you been told your fibromyalgia is caused by?

10 things to reduce fibromyalgia symptoms

Sat, 29 Aug 2015 00:00:00 +0200

It’s been more than 15 years since I was diagnosed with fibromyalgia, and the doctors suspect I had it long before then.

I’ve experimented with a lot of therapies, prescriptions and other things that are often used to reduce muscular pain.

Which means I’ve also found many things that can make fibromyalgia worse!

These are my top 10 things that help me manage and reduce fibromyalgia symptoms.

1. Enough sleep

This has to be the most important to reduce fibromyalgia symptoms.

If I don’t get 10 hours of sleep at night, my muscle and joint pain is much higher the next day. And it’s quite likely I’ll develop a headache, either sinus or from my neck.

Getting to sleep has generally not been a problem for me. Although, since I had cortisone for wrist pain, I have had some trouble. Valerian helps there, as does a good sleep routine - no electronics in bed, no reading, use ear plugs to block noise. Progressive relaxation can also help, if pain is making it difficult to fall asleep.

I still wake up many times during the night, but it’s a lot less than I used to. If I forget to take gabapentin (the full dose only at night before sleeping), then I don’t sleep at all. Not good.

2. Heat packs

I already used these a lot for endometriosis pain, but they also reduce fibro pain and help me deal with a costochondritis flare. Neck, upper back, chest and even jaw get regular heat packs applied. Especially when I freeze - what body-temperature control?!

On nights when I go to sleep with a sore neck or upper back, or in colder weather the heat packs go into bed first, and keep me warm as I fall asleep.

I currently have a mixture of wheat and mud packs, both normally heated in the microwave for a few minutes. I found the cherry stone and gel packs lost their heat far too quickly.

3. Massage

This is the best thing for shutting off the pain from aching muscles that is not caused by any underlying problem (neuroma, joint, ganglion).

Unfortunately, I haven’t gotten self-massage to work, and the electric shiatsu-style massage cushion causes bad bruises, so this needs a willing accomplice.

4. Sports rubs / warming balm

I don’t know whether it’s more the quick massage that helps, or the warming balm. A combination, perhaps?

I have tried a number of different sports rubs, and personally they always feel freezing cold to me (aren’t they are meant to be warming?) I currently use three different types of Tiger balm and a Kneipp arnica warming balm. In Australia, I also used Deep Heat.

5. Cooler weather - layered clothing and lots of blankets

My temperature regulation is completed screwed up. So I need to pull on and take off layers of clothing quickly and easily. I’ve found merino clothing to be good for warmth without too much bulk. Plus it normally comes in multiple thicknesses/warmths.

I have three levels of warmth for bed, and can add another couple of blankets and a quilt if I freeze despite my warm doona. And there are two blankets and a quilt for sitting on the sofa or at the computer.

Occasionally, a kitty joins me and provides extra warmth. Purring helps reduce fibromyalgia pain too!

6. Warmer weather - cold foot baths and ice packs

I only just discovered that I could stand ice packs, but only in really hot weather. I still can’t hold them or have them on my feet - that causes far too much Raynaud’s pain (a secondary symptom of fibro). But an ice pack resting on my back, side or chest keeps me much cooler in hot weather. I’ve even slept with a cold pack!

Despite ice causing a lot of foot pain, a cool/cold foot bath is ok and the quickest way to bring my body temperature down if I overheat, an easy thing for me to do in summer. Combine it with Epsom salts for a bit more muscle relaxation in my feet and calves.

7. Music and meditation

Only recently have they found that music can help broken bones heal faster, so it’s no wonder I’ve always found listening to music reduces my pain.

As a teen, I used the 1492 soundtrack to fall asleep to - a good trigger! These days, it’s usually the Riven or Last Samurai soundtracks that help me sleep.

I picked up the habit of daily meditation several months ago, and have found it has greatly reduced my reactivity to stressful situations, and therefore the physical pain this normally causes.

Meditation has been proven to reduce the perception of pain - something very useful for fibromyagia patients.

8. Feet up

If I sit with my feet on the floor, my calves and feet start to hurt and then go numb. To prevent that pain and recover from walking or standing, I need my legs up.

That’s why I got an L-shaped couch - I can sit of an evening with my legs up. I also use the foot stool of my rocker when I need to sit at the computer for long periods.

9. Clean eating

Although the actual task can cause pain, cooking from scratch has reduced, but not eliminated, headaches, eczema-like skin problems and bowel cramping (IBS is another common secondary symptom of fibro).

If I eat out, or eat a packaged meal, I have usually heightened pain the next day. Prepared sauces, especially in powder form, are a certainty to either give me a headache the next day, or extreme bowel cramping that night.

Whether that is placebo or not, I don’t know.

10. Custom-fitted shoe insoles

I’ve been told that my Moreton’s neuromas are a secondary symptom of fibro, a very annoying one too! If I don’t wear the insoles with the metatarsal ‘bump’, I can’t walk very far or stay on my feet for long.

At home, my feet are bare, unless I know I’ll need to be standing for a while (cooking / preserving / gardening / sewing). Then I wear shoes with the insoles.

What reduces your fibromyalgia symptoms?

If you know someone this post might help, please do share it with them.

Build my own endometriosis rehabilitation course

Sat, 22 Aug 2015 00:00:00 +0200

After my sixth laparoscopy for endometriosis, this time a hysterectomy to remove the adenomyosis and cyst-filled cervix, I was meant to go on a 4-5 week endometriosis rehabilitation course.

This would have included:

Water aerobics
Physiotherapy both in and out of water
Pelvic and back strength classes
Psychotherapy for pain management
Psychotherapy to help with the inability to have children (this is a non-issue for me)
Relaxation classes
Pain management classes
Massage
Dietary guidelines to help reduce endometriosis and pain
Optimization of pain medications with an anesthesiologist
Gynecological exam and medications for endometriosis
Electro-therapy for pain management
Balneotherapy (lots of baths with salts and herbs)
Mud packs and mud baths

The schedule for this endometriosis rehab is a packed one - from 7am until 6pm you would run from appointment to appointment, Monday through to Saturday.

I was really looking forward to going, but unfortunately, the health insurers decided that I didn’t need it.

Instead, they recommended that I see a local psychotherapist, specializing in infertility and/or psychosomatic causes of pain. No idea why, because the lab results report I still have endometriosis after the operation, and I explained I really don’t want kids.

They also gave me a list of ‘pain specialists’, but most of them were orthopedic doctors. Pelvic soft tissue problems are not joint problems!

Building my own rehabilitation course

After a day of being crazily upset, and knowing these decisions here can’t be questioned, I set about building my own ‘rehab course’ with local doctors and therapists.

There are long waiting times, I will have to pay for a lot without insurance coverage, and it won’t be intensive, but I think I can cover most of the content of the endometriosis rehabilitation course.

Psychotherapy - PTSD counseling is more important and urgent for me, help for living with chronic pain would also be useful as I’ve never had psychological ‘treatment’ for that. Unfortunately, there’s a 6-7 month wait, and no English speaking doctor specializes in either of these areas.

Anesthesiology - This is a good choice for looking at my pain medications (my current low-dose codeine/paracetamol does not cover, so I just take nothing and not move around). I’ve found a specialist who also deals with fibromyalgia. They also offer electro-therapy, physiotherapy and massage. But it’s a 4 month wait.

Water aerobics - Joined a class in a warm water pool - there are only two warm pools in Leipzig. 2 month wait for the next class to start.

Gymnastik - This is the movement-oriented physiotherapy. Ideally, it would have been in the warm pool, but they have no openings for 6+ months. So, same facility, but on land - probably better for back/pelvis exercises anyway. Gathering forms, hopefully not a lot wait.

Physiotherapy - I already go once a week to keep my C2 neck/headache spinal problem in check. I think this will be bumped up to twice a week. This is more manual therapy than physiotherapy - a mixture of massage and stretching, no exercises.

Dietition - the health insurer offers ‘dietary classes’, but no one in this city knows anything specific about endometriosis. I’ll have to research this more online. It’s hard sifting out the nonsense from science-based information. A day or two to spend in PubMed.

Relaxation - Easy to do at home. I already meditate once a day as it helps with pain and do progressive relaxation as I fall asleep. Increasing meditation to twice a day and starting tai chi.

Balneotherapy - This is another easy one to do at home - baths with epsom salts or other good stuff. I think I’ll skip the mud baths though - too much cleaning up!

Massage - There are many massage therapists, but I suspect few have experience with reducing adhesions and improving mobility in the pelvis. Will need to ask around. ‘Twill be expensive as it’s not covered by insurance at all! Or I can try to train my partner …

Other additions to my endometriosis rehab team

Gynecologist - I’ve optimised my endometriosis medications already, and don’t want to do a fourth course of Zoladex/Lupron any time soon, so my gynecologist doesn’t have much to do.

Urologist - may need to be added to my rehab team, if the bladder pain from the hysterectomy doesn’t go away (it has gotten less in the last month).

Bowel specialist - And I should search for a bowel doctor, to look (again) into the cyclical bowel bleeding, that can only be endometriosis, even though it couldn’t be seen in the laparoscopy and colonoscopy.

So, that’s how I’m building my own rehabilitation course.

Have you been on a rehabilitation course?

What was it like? Could you design your own?

Have I missed something important in the one I’m designing?

Doctor shopping and the chronically ill

Wed, 05 Aug 2015 00:00:00 +0200

This was prompted by an article about the fatal overdose of a nurse who had ‘doctor shopped’ to feed her pain-killer addiction in Australia, before stealing liquid fentanyl from her workplace.

“Doctor shopping” is touted as becoming a problem worldwide, particularly with the over-prescription of medications, fuelling prescription medication addiction and drug-seeking behaviour (although this study finds no correlation between doctor shopping and short-acting abuse-able opioid use).

The addicted then ‘shop around’ multiple doctors simultaneously to receive multiples of the same prescription, more than would normally be prescribed by a single doctor.

They also visit multiple pharmacies, to minimise the risk that they could be caught filling multiple prescriptions.

Without a centralised, real-time prescription-patient database in place to track filled prescriptions, both doctors and pharmacists are forced to make an educated guess - is the patient for real, or are they drug-seeking?

It's not easy to guess

Unfortunately, this has resulted in many doctors refusing to prescribe strong pain killers or relaxants, especially in the US.

Even emergency departments at hospitals are starting to refuse to provide pain relief.

That leaves those with chronic pain no way to get pain relief.

My peeve - 'prescription shopping' not 'doctor shopping'

‘Doctor shopping’ is badly named.

If you want to buy clothes, you go ‘clothes shopping’, not ‘clothing shop shopping’.

Want to buy food? Go ‘grocery shopping’, not ‘grocer shopping’.

If you want to get prescription medications, you go ‘prescription shopping’.

You don’t want to buy a doctor!

Unfortunately we are stuck with the inaccurate term of ‘doctor shopping’.

Tolerance is not the same as addiction

Many chronic pain sufferers are not addicted. The amounts of medication they take are only just enough to cover their pain and symptoms.

Unfortunately, the human body can build up a tolerance to medication, and chronic pain sufferers then require more or different medication to cover their symptoms. But that doesn’t mean they are addicted. It just means their medication schedule and types need tweaking.

Dependence can also cause a problem, making it hard to stop using a medication when the symptoms have recently disappeared. But most medications can be tapered down over time, after the initial reason is resolved.

Addiction is taking too much, too often, more than the symptoms require. And it means doing this over an extended period.

Can you tell when someone is lying or not?

Most chronically ill people don’t lie about their needs.

Most if not all addicts do lie, often very convincingly, just to feed their addiction.

It’s not fair to punish the doctors and pharmacists for being human and not being able to differentiate something that is often not differentiable.

Doctors move and retire, patients move too

When a patient has seen many doctors in a relatively short period of time, they are often accused of ‘doctor shopping’.

In my experience, doctors don’t stay for decades in the one clinic. The move regularly. They change fields. They retire, and a replacement comes in.

I saw at least 6 different doctors in the years I was at university, just in the university clinic. I’ve had to find new doctors almost every time I’ve moved house (and countries) - about once a year.

I’d be flagged for changing doctors too often, for sure!

You can change doctors to seek a second (and third opinion). Or to see different specialists.

It can be because the doctor just isn’t taking your illness seriously.

The number of times I head “You’re imagining it” when trying to get my endometriosis diagnosed was insane!

Not all ‘doctor shopping’ is driven by suspect motivations, such as prescription drug seeking.

The solution: a central patient-prescription system

A simple (if expensive) solution - an electronic, real-time prescription system connecting all doctors, all clinics, all pharmacists, all hospitals and the government if rebates are allowed.

These systems are already half-implemented in many countries.

This would all but stop prescription shopping, prevent doctors losing their licenses for over-prescribing, provide multiple doctors access to the complete medical records of a patient.

This leaves the medication available for those who need it - the chronically ill patients.

Don't punish the chronically ill or the doctors who try to help them, just because of the tiny few who prescription-shop and the current broken system that allows them to do it.

What are your thoughts?

Have you been personally impacted by ’doctor shopping’?

Why hobbies with chronic pain are important

Wed, 29 Jul 2015 00:00:00 +0200

Chronic pain affects all aspects of life - work, social and your hobbies.

In many cases, the first thing that gets dropped as we try to manage our pain and keep functioning, are our hobbies.

Many people, not just chronic illness sufferers, prioritise work and social gatherings above any hobbies, ignoring the positive health impacts that a hobby provides.

It’s extremely important to have interests and hobbies to look forward to and enjoy.

In fact, the Nottingham Health Profile, a measure of the quality of life of chronic pain patients, has one section devoted to hobbies.

To improve our quality of life, we need to have enjoyable hobbies, even with our pain.

Plus spending an hour or more involved in our hobby each day can prevent or delay dementia!

A happier brain feels less pain

When we take pleasure in a hobby, the brain releases a selection of chemicals that balance out the pain signals and reduce anxiety - serotonin, norepinephrine and dopamine.

Repetitive hobbies like crochet or knitting are a form of mindfulness meditation, distracting our minds by following a pattern and counting, and thus releasing us from worry and tension.

Meditation lets us better manage our pain, and physically creating something provides a sense of accomplishment (more positive brain chemicals).

Hobbies can double as therapy

Artistic hobbies can make you more resilient, improve mental health, and develop a social support network, although there are some risks of repetitive injuries (which can be mitigated), according to a recent study in the British Medical Journal.

Art therapy is used a lot when dealing with PTSD and chronic pain, especially in the initial stages where anger and grief needs to be released and processed.

Even if you aren’t an artist, drawing, painting or scrapbooking can help release the anger at losing control of your body and your life.

Can the arts ease your chronic pain discusses how art and hobbies encourage mindfulness, increase happiness, and can also reduce pain.

Music therapy and colouring in an outlined picture is more positive - this brings happiness and joy, releasing those positive brain chemicals. Performing music lets us be in the moment, similar to knitting and crochet, and lets us escape the constant barrage of thoughts and worries about our pain.

Journalling privately can help us deal with pain and illness, loss and anger. You also get good feelings from helping others when you blog or publish articles online.

Pain-friendly hobbies

Running ultra marathons, playing tennis or doing kung fu may no longer be possible when you have developed a chronic illness.

Rock climbing, head banging at metal concerts, or even long distance travelling may be out of the question.

In high school, I had to give up playing wind instruments, violin and tennis as the costochondritis would not go away. More recently, I’ve had to cut back on gardening, cooking and drop piano playing as a new wrist problem surfaced. So frustrating!

Finding a new interest or modifying an existing hobby is emotional - we need to learn our new physical limitations, grieve the loss of our favourite hobbies or abilities, and move on to finding something new to enjoy.

Adjust existing hobbies

If standing and painting is impossible, look at getting a tilted desk or a fully adjustable easel that you can angle to reduce pain in the neck and back.
Use a stool or chair when cooking, woodturning, or other hobbies that are normally done standing.
Get some raised, no dig gardening beds built to reduce the amount of bending required.
Look into ergonomic crochet hooks - they are great for rheumatic hands.
Use a brace around sore joints.
Switch to lighter camera gear, or get a hand strap for support.
Use the speech-to-text programs that are now standard in most operating systems - speak instead of typing.
Buy an adjustable stand (floor or bed) for embroidery, tapestry, cross stitch and hand quilting.

I love my needlework frame (similar to this FA Edmunds stand), which I use both standing up and on the couch when I need to keep my legs up.

Find a new low-impact hobby to enjoy

Crafting: crochet, knitting, sewing, scrapbooking, jewellery making, origami,
Arts: drawing, painting, colouring in, zentangle, photography, photo editing,
Health and relaxation: meditation, tai chi, gentle yoga, walking
Learn something new: there are many free courses on all sorts of topics available online, including university courses. Learning a language is great for keeping the mind healthy as we get older!
Music: play simpler and slower pieces, switch instruments so it’s easier on the body, sing, or listen to your favourite music.
Read: a lot!
Write: a private journal, a public blog, articles online, poetry, short stories or novels - writing is a good distraction, and can be a form of therapy.
Do puzzles: cross words, sudoku, word finds, solve riddles, or do jigsaw puzzles.
Play games: board games, computer games, word games and card games.

What other hobbies with chronic pain are there?

What are your favourite hobbies that you can do when ill or in pain?

Have you had to drop some of your interests?

On trigger warnings

Fri, 24 Jul 2015 00:00:00 +0200

You’ve probably seen trigger warnings appearing in news articles, blog posts, on Amazon and sometimes ahead of radio or television news presentations.

Some universities and high schools may provide trigger warnings for courses or books where traumatic events are covered.

The overuse of trigger warnings was recently discussed amongst a group of friends, after uproar over the Politico blog claiming that “Western Lit is being shot to death by trigger warnings”.

I was surprised how many people were vehemently against providing any trigger warnings.

The comments on The Passive Voice’s repost of the Politico blog post (before it was taken down) were interesting - mostly balanced between pro- and anti- warnings, and with a good dollop of common sense from many commenters, along with some troll-like responses.

What do trigger warnings cover?

Trauma triggers make a person remember a devastating traumatic memory. Often, the memory is felt as if you are re-living it, the feelings, scents, sounds, and images are typically overwhelming.

A trigger can be anything that makes you remember, it can be a rape scene, an angry raised voice, or something completely innocuous, like the smell of the cigarettes that the attacker reeked of, or the sound of a siren.

Trigger warnings are to there to help PTSD sufferers either avoid the triggering material, or brace themselves so they aren’t badly triggered.

PTSD doesn’t develop from all traumatic experiences. The traumatic event has to be devastating in impact, and is typically violent or abusive.

Of course, trigger warnings can’t cover everyone’s triggers. They do cover many of the main ones: graphic violence, child abuse, rape, and suicide.

Why the controversy about trigger warnings?

Some psychologists advocate avoidance of triggers, to allow PTSD sufferers to go about their lives without having to (so often) re-live the trauma. This is a good approach when the trauma is too new, too raw, and you are not yet ready to work with it.

Other psychologists support the exposure model, stating that prolonged, systemic exposure to trauma triggers is desensitising. They believe that trigger warnings lead to avoidance, and that leads to depression and reinforces PTSD.

In fact, exposure therapy seems to be the most successful over the long term, seeming to support the trigger warning opponents position. But what these people forget is that exposure is systematic, planned and prepared for.

Example: Say that you were afraid of spiders, many people are terrified of them.

“Just get over it” or “you are too sensitive, toughen up” is unlikely to make you unafraid.

Having spiders randomly thrown on you throughout the day will probably just worsen your fear.

But preparing for a close encounter, and slowly learning to hold a spider might just help - this is exposure therapy.

And that’s what trigger warnings do - they allow PTSD sufferers time to prepare for exposure, or the choice to avoid the trigger if they aren’t able to deal with it at that time.

Unfortunately, some people do try to use trigger warnings to change entire course syllabuses because they don’t like or agree with the content.

Some other common arguments against using trigger warnings

You can’t allow for everyone’s trauma. Of course that’s true. But you can help the majority of PTSD sufferers. Extreme violence (war, abuse) and sexual assault are the main causes of PTSD.

You can’t or shouldn’t pander to such a small group of people. In America, almost 10% of women and 4% of men will experience PTSD at some stage of their life. That’s not a small group.

Trigger warnings are a manifestation of the nanny state. I like knowing what ingredients are in my food so I can avoid a lot of artificial additives and migraine triggers, what fabrics are in my clothes so I can wash them appropriately, where products are from so I can support local growers and manufacturers.

Labelling with the source, Fair Trade or organic certification, ingredients or washing instructions is generally unobtrusive, and helps you make a choice. Just like providing trigger warnings.

⋅ Trigger warning stickers will ruin book covers and hurt sales. Stickers need not be plastered over the front covers. Amazon uses a single line at the end of the blurb. A warning could be added to print books on the ISBN/Publisher information page, or a line on the back cover. Many romance books already do this with discreet ‘heat’ ratings.

Those who want to see the warnings will look for them. Just like clothing labels or ingredients lists. Plus there will be always people who will buy because of the warning, like music with explicit lyrics.

⋅ Trigger warnings are censorship. No they aren’t. Censorship blocks you from accessing the content. A trigger warning doesn’t block or change (sanitise) anything. They are more like the maturity ratings on movies, a guide, nothing more sinister.

⋅ Trigger warnings give away the plot of a book. They don’t need to be specific - a character being pushed down stairs can be noted with a “violence” trigger warning. Sure they give away some information, but not the plot.

⋅ Triggers warnings enable victim-behaviour, and are patronising. Actually, they help the PTSD sufferer make decisions to support their recovery process. That’s not victim-behaviour, and doesn’t tell them they can’t look after themselves.

⋅ Art is meant to make you uncomfortable. Uncomfortable and questioning, yes. Re-living trauma with full-blown flashbacks, typically not.

Trigger warnings are a courtesy to be used sensibly

As a tool for PTSD sufferers to better manage their lives, protect their families from outbursts and flashbacks, and recover from their traumatic experience, trigger warnings are very helpful.

On the other hand, PTSD sufferers can be proactive - searching out blurbs and reviews of books and movies to - and can use common sense. Studying English literature, history, art history and perhaps even philosophy is likely to contain triggering content. Either survivors prepare to deal with it, write about it and discuss it, or choose another area to study.

But when such books/topics/films are made compulsory during secondary school, trigger warnings should be provided, as well as alternatives for survivors (speaking from my personal bad experience at high school with prescribed texts and inadequate blurbs).

Should we put trigger warnings on everything? Speaking as a cPTSD sufferer, no.

I would prefer having warnings only on graphic or detailed depictions of the common triggers.

That’s where there are none (yet) on this blog - I haven’t gone into graphic detail about the trauma I survived.

But not using warnings at all says “you are unimportant” to survivors.

What do you think about trigger warnings?

Should we use them or not?
What things should have trigger warnings?
Do you think I should include them on my posts where I mention my childhood of abuse?

5 Things that make fibromyalgia worse

Thu, 16 Jul 2015 00:00:00 +0200

Fibromyalgia is a frustrating beast.

It’s very hard to diagnose, with doctors resorting to this diagnosis after eliminating everything else with barrage after barrage of tests.

It’s even harder to treat. Or manage in day to day life.

Fibro patients try rafts of medications, physical and alternative therapies, and settle on the ones that help the most.

When you think you have a handle on the pain and fatigue, something triggers a flare.

Just as each person with fibromyalgia reacts differently to medications and treatments, everyone has their own set of triggers.

Hunting down these triggers takes time and is often frustrating.

Here are my top five triggers for making me writhe in pain, or collapse in exhaustion, as well as solutions to have fewer and gentler flares.

1. A sleepless night

This is by far the worst trigger for me. After a sleepless night I’m useless - my head is foggy, my vision is usually doubled, or at least unable to focus, my legs want to collapse with each step, I’m shaky, dizzy and often nauseous, and the pain, oy.

It’s a guaranteed severe headache. Bowel cramps (IBS) are almost a certainty. My legs ache, calves cramp, sciatic nerve twinges. Upper back and chest feel compressed, stiff and swollen.

Showering feels like a marathon, let alone making food. Don’t ask me to do any task that requires thinking!

Solution - take a long nap or two!

Unfortunately, I seem unable to nap unless extremely sick with a virus. Even a migraine doesn’t knock me out these days.

If naps would work for me, I’d take them, regularly!

2. A heated argument with my partner

I wasn’t sure whether this should go first or second. Arguments typically result in sleepless nights, and a lot of extra sinus pain from crying.

Big arguments are much worse.

Getting upset or angry is never a good idea when you are trying to keep your fibromyalgia in check.

When you get upset, your cortisol dips. But fibromyalgia patients have low cortisol levels all the time!

Low cortisol causes or worsens a bunch of fibromyalgia symptoms: depression, dizziness, confusion, weakness, fatigue, hypersensitivity, anxiety, muscle aches, skin sensitivity, nausea, bowel pain, clumsiness and more.

So an argument with a fibromyalgia sufferer lowers their already low cortisol, and worsens all of their symptoms.

In addition, heart rate and blood pressure increase, we tense up especially in the shoulders and neck, adding more pain and headaches, and restricting our already poor blood flow to our sore muscles.

Solution: learn to talk things out calmly, or take some time out (alone) to take the heat off.

Easier said than done!

My partner and I are getting better at this, and I’ve noticed fewer extreme flares as a result.

3. Over-exertion

This can be exercise, or it can be attending one too many social gatherings.

Any time we push past pain and fatigue limits, we invite a flare. Overdoing cleaning, cooking, walking, or anything counts.

Studies show that exercise induced hormones do not increase in fibromyalgia patients to the same degree as healthy exercising people. This means we get exhausted quicker. We can’t go as intense or as long as ‘normal’ people.

Plus we start out at a disadvantage because we constantly struggle with stiffness, pain and low energy.

We don’t get as much benefit from intense exercise (anti-depressing hormones or cardio improvements).

However daily, gentle exercise has an anti-inflammatory effect on fibromyalgia, especially when done in warm water. This is a good thing, because most fibro sufferers have chronic low-level inflammation.

Solution: habitual moderation

Daily exercise is important for fibro patients - it helps build muscle strength, strengthens the heart, and actually gives us a much needed boost in cortisol, albeit a small one. But don't jump into a full gym routine, or go for a 10km walk. Start very gently, and build up very slowly. Try warm water aerobics!
Space out your socialising, no binging on events. Get people to visit you instead of heading out.
Don't clean the entire house at once, do a small bit each day. Hire a cleaner (or rope in a friend).
Cook extras and freeze them. Pasta sauce, chilli, curry, soups, and stews are great. The preparation work for a larger amount of many meals is not much extra, and you get a few nights where you don't need to cook.

4. Stress

When someone is stressed, their hormones and neurotransmitters respond - lowered growth hormones, androgens, estrogens, and serotonin are all reduced, while substance P is increased.

That means healthy people get grumpy, tired, headachey and have sleeping problems and aching muscles when stressed. Chronic stress can lead to burnout and depression in otherwise healthy people.

One study found that the hormone and neurotransmitter stress response of healthy people matched fibromyalgia patients’ baseline.

So, our bodies are always ‘stressed’, even when there is nothing to be stressed about.

We need to avoid adding more stress to our already burdened bodies!

Solution: constant stress management

It’s important that we incorporate stress management techniques into our daily lives.

Simplify commitments and routines.
Lessen contact with stressful people.
Meditate, do tai chi, yoga, or another physical therapy for stress relief.
Hug someone, or belly laugh.
Eat less of things which can aggravate the stress response: caffeine, sugar, alcohol.
Take a bath or read for fun.

5. Illness or injury

No one enjoys being ill or healing from an injury. For most healthy people, it’s an inconvenience, if somewhat painful.

For fibromyalgia patients, being ill makes all our other symptoms so much worse.

We already struggle with energy levels and pain on a daily basis, so adding in the tiring healing process and the pain directly caused by the illness/injury and it can trigger a massive fibro flare.

Solution: get help when you are ill, and try to prevent illnesses

Put aside cleaning and cooking as much as possible, and spend your energy on healing when you are sick.
Ask friends and family for help.
When you know a cold virus has infested the population, try to avoid people as much as possible. Public transport, shopping centers, doctors' waiting rooms and schools are particularly bad.
Ask friends and family to stay away if they or anyone in their immediate family are sick.
Think about getting a flu shot, if it's recommended for you.
Go Japanese, and wear a face mask.
Don't freeze or overheat in cold/hot weather. Use cool foot baths and towels to stave of heat exhaustion, invest in heat packs and heated blankets for wintry weather.
And layer, layer, layer in winter - going from the freezing outside to an overheated room is hard on fibromites and can increase our chance of getting ill!

Your turn

What tips and tricks do you use to beat the top five things that make fibromyalgia worse?

Back on Visanne

Thu, 09 Jul 2015 00:00:00 +0200

After my hysterectomy, I was so happy to be able to get off Visanne after a year of being on it.

Although the side effects didn’t seem to be too severe, one of them was - the acne.

I was covered in cysts and oily bumps from the top of my head, sometimes down to my waist.

It waxed and waned - two weeks of extremely severe acne, followed by two weeks of slow healing (fibromyalgia seems to slow the healing process). Some cysts never disappeared completely.

I got comments from family that I looked like had some dreadful contagious skin disease.

Pointing fingers from young kids asking their parents what was on my face.

Such severe acne is depressing, shaming, isolating.

Almost no acne when off Visanne

In the two months after my operation, my skin cleared completely. Only a low level of blackheads and the occasional small pimple remained. Better than in all of the 25+ years I had been on birth control, trying to control the endometriosis and pain.

When I finally got my lab results from the hysterectomy, I knew I’d have to go back on Visanne, and stay on it. They had taken biopsies during the laparoscopic hysterectomy from places that had seemed clear to the camera. Under a microscope, they weren’t - endometriosis cells were found throughout.

At my second checkup with the gynecologist after the operation, I was told I’d have to stay on Visanne, at least until menopause, or else the endometriosis would quickly regrow. Again.

I don’t want that. I don’t want a seventh laparoscopy.

Plus the surgeons here in Germany told me they wouldn’t do yet another laparoscopy within 10 years of my hysterectomy, because I’ve had too many laparoscopies and colonoscopies. And with every operation, the risks, the impact and the required healing time increase.

Return of the Visanne acne

So back on Visanne.

The dreadful acne returned.

A little in the first month, and then in the second month, in full force - families of cysts, from head to hip.

It comes and goes in that familiar cycle - two weeks of cysts, two weeks of healing.

I haven’t yet found anything to reduce or stop the Visanne acne.

My skin is sensitive, easily develops rashes and eczema, is allergic to erythromycin, badly sensitive to salicylic acid, and likes to peel.

So I’ve been sticking with mild cleansers, tea tree oil for drying out spots and preventing infection, and a skin healing oil mixture that I discovered when I had extreme urticaria for a year.

Other side effects of Visanne

The other listed side effects of Visanne: breast discomfort, decreased mood and libido, sleep problems, headaches and migraines, irritability and nervousness, nausea, weakness and weight gain.

I had all of these when not taking the medication, and can’t clearly gauge how much it has contributed.

Breast soreness, enlarging and migraines have always been cyclical with my period and generally severe. Sleep problems, depression and libido problems can come from fibromyalgia and PTSD. Weight gain and nausea from the fibromyalgia medication and generally being in chronic pain. And I have two other headache contributors - regular sinusitis and a cervical spine problem.

I’ll keep searching for ways to reduce the acne, but I’ll stay on Visanne.

Skin healing oil recipe

This oil can be used to help repair skin and reduce itching.

I typically rub a few drops lightly over my face and neck before bed after washing - the lavender and chamomile scents also help with sleep problems.

When I had urticaria (hives), I’d put about 20 or more drops into a bath with a bag of oats to soothe the itchiness, and use the oat bag to very gently rub the surface oil over my skin.

It also makes a great nail oil!

Base oil mixture

vitamin E oil - skin healing, scar minimising
rosehip oil - moisturising dry skin
calendula oil - healing skin abrasions

Essential oils

Drip these into the base oil mixture, then shake vigorously

German or blue chamomile (3% in jojoba oil) - reduces inflammation and itchiness
lavender - antiseptic, skin healing, plus it's my favourite scent
tea tree - antiseptic, anti-acne, but I hate the smell!
bergamot - skin healing
rosewood - antiseptic and smells lovely

Additions or substitutions

wheatgerm base oil
grapeseed base oil - good for oily skin
almond base oil - moisturising
rose (3% in jojoba) - for the scent
patchouli - skin healing
neroli - scent, emotional support
jasmine - scent, emotional support
(rose) geranium - skin healing and smells great
ylang ylang - reduces oil production
sandalwood - skin healing and wonderful scent, but very expensive

Your experience with Visanne?

What side effects do you get?

Have you managed to control the acne, if you get it?

The Old Battery Theory of Chronic Illness

Mon, 29 Jun 2015 00:00:00 +0200

The Spoon Theory by Christine Miserando is an excellent way to describe what living with a chronic illness is like.

You are allocated a certain number of spoons each day - this your energy bank.

Each task you do, even when they are comparatively simple tasks like hair washing, uses one spoon. You don’t get any spoons back until the next day.

If you use more spoons than you actually have, you have fewer spoons the next day or several days, as you pay back your energy debt.

Christine came up with this description when struggling to explain what Lupus was like to a close friend - physically demonstrating by using all the spoons on the table at a restaurant.

She gave the spoons to her friend, and asked her to step through a normal day. The catch - Christine remained in control of when spoons were taken away - just like the control that the chronic illness has over the patient’s energy levels.

It’s the way I’ve described living with endometriosis and fibromyalgia for many years. And it’s great when you can physically demonstrate the spoon-rationing.

But there isn’t enough emphasis on the more extreme fluctuations in energy and pain that I seem to deal with.

So, an old rechargeable laptop battery might be a better analogy.

The Spoon Theory improved - the old rechargeable battery theory

Batteries are like piggy banks - you have to recharge them (sleep, rest) in order to have enough energy for the following day. And there’s finite space in a piggy bank - you can’t recharge indefinitely and have an unlimited energy supply.

If you don’t sleep enough, you don’t recharge properly, and you’ll have less battery reserve the next day. Sounds just like the result of insomnia to me!

All the systems in your body need enough energy to function, just like a modern computer. If there are only low levels available, these bodily systems won’t function properly, causing nerve pain, muscle cramping, headaches, bowel disruptions, dizziness, and so on.

Older, less healthy batteries don't perform like new ones

When new and healthy, batteries can last for hours, perhaps even days of normal use before needing to be recharged.

Of course, if you push your laptop hard - lots of gaming with a bright monitor, you’ll chew through the stored energy a lot quicker, even when the battery is new. Just like a healthy person trying to pull continuous all-nighters in college - at some point they also need to rest and recharge.

But when the batteries don’t hold their charge so well, the energy levels are lower to begin with, and drop faster. Just like a person with chronic illness.

A battery and its energy use

Light tasks, reading, a bit of web browsing, some writing, don’t reduce the battery level too quickly.

But start to do some more heavy duty things, like photo editing, serious word-processing of longer documents, watching a video or gaming, and the charge can drop drastically. Cooking, light gardening or cleaning, or attending events, even when they are enjoyable.

Old batteries can’t support some energy hungry tasks at all. Like moving house, traveling long distances, working at a stressful or physically demanding job.

When battery life is shortened

The longer a battery sits without being used, the less total charge it can hold. This is why most chronic illness sufferers are told to keep doing light exercises and activities. Don’t just lie in bed or on the couch and do nothing.

Also, parasitic drains, like keeping the laptop on standby, just in case you need to see an email arrive, eat battery power. Just like being alert and ready to react to changes, events or invitations, or continuing to deal with toxic people over a prolonged period.

With older style batteries, completely discharging the battery can completely kill it. Or at the least, it will never charge properly again.

Pushing past energy limits is also very bad for the chronically ill - they might need days, or even weeks to recover. Flying to or from Australia (28+ hours of travelling) knocks me out for at least a week! Recovery from operations may take even longer.

How the charge in a battery level is affected by weather

If the weather is too cold, the battery can’t provide the energy as quickly as needed and stops working (internal resistance is higher and the held charge is less). If you’ve ever taken your camera into temperatures well below freezing and had it stop working - that’s why.

In extremely hot weather, the life of your battery is shortened by up to half!

Chronic illness sufferers also have a lot of problems in hot and/or cold weather. Personally, I shut down when it gets hot, and pain goes through the roof.

Wet weather can mess with the connections between device and battery, and can even short the battery and stop it from working.

I know many people for whom humidity is a problem. Personally, I prefer humid weather, very dry weather makes my sinuses extremely grumpy.

A spare battery can help

A carer or helpful friend is like having a spare battery. They can pick up the tasks that are beyond your capacity, and help you to better regulate your energy usage, leaving you with a more reliable charge each day.

Automating tasks can reduce the drain on your battery - shop online using the same list each week or fortnight, cook from a rotating menu plan so you don’t have to make so many decisions, wear the same clothing, go to sleep and wake up at the same time each day.

And definitely avoid corrosive parasites!

What do you think?

Is the battery theory more accurate than the spoon theory for chronic illness and pain?

Meditation and chronic pain

Mon, 22 Jun 2015 00:00:00 +0200

Can meditation really reduce chronic pain?

The answer is, maybe.

Mindfulness meditation is said to have many health benefits - reducing stress and anxiety, decreasing depression and increasing happiness.

Progressive relaxation (a form of mindfulness meditation) can improve sleep quality, reduce muscle tension and lower blood pressure.

My university had produced a guided progressive relaxation CD for staff and students to use to better manage stress and high workloads.

I’d also come across the progressive relaxation technique and a few breathing patterns in yoga classes.

Meditation helps you relax

On nights where sleep was avoiding me, I’d gradually focus on and try to relax each joint and muscle, starting from the toes, ending with my scalp. Sometimes, I’d have to run through this a few times before becoming sleepy, but sometimes I’d be asleep before I made it to my hips.

As a sleep-aid, this progressive relaxation meditation was very helpful.

It was also useful for spot-relaxing areas that were getting treated by physiotherapists. Breathe into the pain and will the muscles to relax.

But I’d never meditated during the day.

Beginning a meditation practice

Sitting in silence and stilling my mind for even just 5 minutes was impossible. I’d fidget, hurt, and my mind would run off and get busy stressing over something.

The only time I could stay still was when I was trying to fall asleep.

Using a candle to focus my attention was a good idea - I love candles. Except now I have two curious cats, and headaches that don’t like bright spots.

So, no candles for meditating.

Meditation apps

Meditation apps were becoming popular. Headspace and Calm were the two biggest and most popular, but I also looked at Buddhify. There are many more apps out there, but I just wanted to get started, and limited my testing.

Note, these aren't affiliate links and I'm not paid to write this, I'm just a satisfied customer.

The free introductory programs on both Headspace and Calm, showed me that I did well when guided in meditation, rather than just sitting in silence.

The Buddhify app is for being mindful when on the go. I found this less helpful for pain and PTSD management.

Andy’s voice and explanations on Headspace were my favorite, but unfortunately, their customer service didn’t respond to a couple of questions I had. Plus, a Headspace subscription is quite expensive.

The background noise of rain on leaves was so wonderfully relaxing on Calm, that it encouraged me to purchase a year’s subscription.

The introduction programs start with 5-10 minute short meditations, and increases gradually when you continue onto the longer programs.

Calm has a number of other meditations that you can dip into as you want - mostly body scan meditations of different lengths, with affirmations.

How meditation is helping me

Currently, I’m on a 50+ day streak of meditating every day, using 10-15 minute guided meditations once or twice a day.

The body scan meditations for sleep are as I’ve always used when insomnia hit. I listen to these whenever I’m having trouble nodding off.

However, adding an extra meditation session during the day has helped me manage my chronic pain a little better.

I get less upset and stressed when things ‘go wrong’, or when someone says something that hurts me.

It’s also helping a little to deal with flashbacks (cPTSD), although I’m still struggling with this at the moment.

Meditation is not a miracle ‘cure’. The pain is still there. It just interferes less - there is less anger, less tension, less anxiety, and a little less pain.

If it’s a placebo effect, that’s fine by me.

But research indicates there might be something physical that happens when you meditate.

Meditation changes your brain for the better

It’s been shown in studies with MRIs, that the brain actually changes during meditation. And these neuroplastic changes stick around afterwards, when you meditate regularly.

Meditation may also decrease activity in the pain network areas in the brain for some people.

An 8 week trial for new meditators by Massachusetts General Hospital showed improvements in the hippocampus (learning, memory) and pre-frontal cortex (decision making, compassion, perspective), and the amygdala was quietened (reduced stress and emotional response). The trial noted that previous research has shown thickening in the cerebral cortex (attention, focus).

In a small study, meditation seemed to reduce the severity of migraine headaches. Another small trial suggested that mindfulness can reduce the impact of chronic back pain.

And although this larger randomized study showed not much effect on the actual chronic pain, the secondary problems of anxiety, depression and acceptance of pain were improved with mindfulness meditation.

Another larger study showed a mindfulness meditation program resulted in less reliance on pain medication, improved activity levels and psychological health.

Depression and anxiety reduction, slight pain reduction, less use of medication, improved life-quality outlook and enjoyment - meditation certainly has a place in managing chronic illness.

Is meditation addictive or dangerous?

I once had a fantastic English class, where students argued about the dangers of meditation.

Some were convinced it was like a drug, addictive and dangerous - you could lose your life, one argued!

Luckily, no studies have shown that meditation is dangerous.

Do you meditate?

Does it help you deal with your chronic illness or pain?

Do you have a favorite meditation technique or app?

Using my illness history

Tue, 16 Jun 2015 00:00:00 +0200

My health has always been poor.

I had constant bladder infections (UTIs), bowel problems, migraines, loads of fevers, joint/foot pain, regular bronchitis, shingles, asthma … quite the sickly kid.

Most doctors have said most of my illnesses were a direct result of the 14 years of daily sexual and emotional abuse by my father, starting from the time I was born.

Unfortunately, this meant I developed several chronic illnesses before I was a teen.

I got known as the ‘sick kid’, the one with the permanent dog-cough. Told I was lazy and making it all up for attention.

Ugh, right.

Throughout my childhood, I felt that illnesses were what defined me.

Life was only about the illnesses. They stopped me from doing everything I enjoyed, and even spending time with friends.

Get curious about illness

An allergic reaction as a young teen, to a bronchitis medication I’d taken so many times before, was the trigger to learn about how each of my illnesses developed, and how they interacted with each other.

Before then, I’d just accepted that I was always the sick kid. That doctors and parents were the experts. They knew what was best for me.

Researching each illness for myself, sent me scurrying after threads of treatments, therapies that might help. I got a better overview and understanding than the specialist doctors or dismissive family.

Once my curiosity was sparked, I saw patterns, pulled common themes together, and experimented.

I discovered some things that helped, and what made symptoms so much worse.

I loved puzzling this tangle out.

It was hard to find doctors who would listen - but I did find them here and there (after firing the bad ones!)

Using my illness history to take back my life

As I’ve tracked and analyzed my illness history, I’ve found many great ways to manage symptoms.

That lets me focus on the things I love.

I got my life back.

Photography, sewing, crafting, friends, gaming, gardening, cooking, music, writing, traveling, languages, teaching … I weave the things I enjoy around my symptoms, albeit sometimes at a reduced capacity to ‘normal’ ‘healthy’ people.

I no longer let my illnesses rule my moods. By knowing how my symptoms come and go, I can focus on my hobbies and work, and enjoy my life.

At least until something new turns up.

Then I get to talk to loads of medical professionals again, try out different treatments and find a new set of things to help me.

It keeps life interesting and, in a strange way, that is enjoyable too.

At the moment I'm juggling

endometriosis, but at least the severe adenomyosis is gone after my hysterectomy.
fibromyalgia, with secondary symptoms of costochondritis, sciatica, IBS, bruxism, migraines, sinusitis, Raynaud's syndrome, and dyshidrotic eczema.
a duplex renal system (doubled kidney), and impaired kidney function.
chronic Post Traumatic Stress Disorder (cPTSD).
new rheumatological symptoms, under the umbrella of synovitis.

A brief note about each of my current illnesses

Endometriosis

Cells that normally form and shed inside the uterus lining grow elsewhere. It acts like a cancer. Endometriosis affects 1 in 10 women, and is typically horrifically painful each month - they are bleeding internally!

The gold standard for ‘managing’ this disease is surgical removal of the cells. But even surgery doesn’t treat the underlying cause, and medications only try to slow the growth.

Adenomyosis

If endometriosis is ignored, it can deeply invade the uterus muscle and cause adenomyosis. This causes extremely heavy monthly bleeding, that goes on for far too long (a surgeon once said it was “like trying to spit through a mouthful of marbles”). The fatigue, bloating and pain are dreadful.

This can be ‘cured’ by removing the uterus - my recent hysterectomy has made my tummy much happier!

Fibromyalgia

An umbrella ‘syndrome’ - no common symptom that everyone has, no common treatment, and no one knows how it works. The main symptoms are extreme pain and fatigue. It’s been theorized that the brain in fibromyalgia sufferers becomes sensitized to pain, and isn’t able to shut the sensations off, even when the cause has disappeared.

Most of my soft-tissue and inflammation problems were lumped into this diagnosis, because the doctors don’t know why else I would have the symptoms. Treatments and medications simply try to help reduce the impact of the pain, inflammation, fatigue, insomnia and brain fog.

Impaired kidneys

This isn’t the same as kidney disease, and results from chronic infections and use of NSAIDs (anti-inflammatory medications). These make your kidneys look like tiny little mice have nibbled away at the edges, leaving the kidneys all lumpy.

My left was a bit special to begin with, doubled kidneys are a reasonably common birth ‘defect’. Unfortunately, through the damage sustained during childhood, I’m now not allowed to take NSAIDs.

Chronic Post Traumatic Stress Disorder

Sustained child abuse causes cPTSD, a different beast to the trauma from a single event that causes PTSD. Of course, following on from this is anxiety, panic attacks, and deep depression. Sadly, this heightens the pain and fatigue, causing nasty loops with fibromyalgia and endometriosis.

Synovitis

This is an interesting beast, and one I really don’t understand yet, having only been recently diagnosed. It’s an initial symptom to a number of different rheumatic diseases, which either cycle between active and passive or progressively worsen.

What's your illness history?

Do you know why and how your illness developed?

How does knowing this help you in your day-to-day life?

Why Still Pain?

Fri, 12 Jun 2015 00:00:00 +0200

My struggles with chronic pain and illness started at a young age. Early childhood in fact.

Back then, there was no internet, no support outside family members and the family’s doctor. And if you were unlucky to have an unsupportive family or doctor, you were very much alone.

As a kid, that was very hard.

You couldn’t easily find out about your illnesses, treatment options were not readily explained.

Usually, you were given an antibiotic, or told it’s “in your head” and to “just deal with it”, and sent away from the doctors.

I had to learn how to get myself through each day, manage my own chronic pain through my school life, and eventually stand up for my rights as both a patient and a person, deserving of treatment.

The age of easy information

These days, it’s so easy to find information about illnesses and diseases.

Too easy perhaps.

It’s too easy to catastrophize and believe you have the worst possible case.

Plus there is too much misinformation around poor health, people selling dodgy treatments and medications, promising miracle cures and diets that just cost money and don’t work. In the worst case, the medications are fatal.

Unfortunately, thinking critically and scientifically is not yet so common, so these dodgy information sellers can make their fortunes.

I want to help

Although I do not have a medical degree, I hope to provide others with a sensible, researched and experienced viewpoint.

I’ve been through (and am going through) these illnesses, treatments and therapies.

I’m still trying different things, learning more about my conditions.

And I hope I can help and support you!

This site will contain information about the illnesses and chronic problems I face, treatments and therapies I have tried (whether they worked or failed), and current research findings.

I’ll share my own daily struggles and triumphs, and you can know you aren’t alone.

Sometimes I will link to products I have used and love. I hope you also find them useful.

I may earn a small commission from linked products, but I promise only to share what has really helped me. (Read the full disclaimer)

Still - an appropriate word in many senses

Still can mean quiet, peaceful, as well as ongoing and not finished yet.

It’s the perfect word to describe people who are learning to live with chronic illness and chronic pain.

Some of my favourite posts on StillPain

Why do I have chronic pain? - It’s not usually just because of bad luck.
Procrastination therapy - How procrastination sabotages your health, whether you know it or not! I’m an expert procrastinator!
Dealing with the ups and downs - How I try to manage the bad days better, and focus on the good days.
Will endometriosis regrow - Debunking many myths that say that endometriosis is easily curable in many ways. Misunderstandings and misinformation about endometriosis is one topic that gets my blood boiling.

How can I help you?

What topics would you like to see here?

What questions do you have?

Would you like to share your story?

How to quickly manage a costochondritis flare

Sun, 07 Jun 2015 00:00:00 +0200

If you have ever suffered costochondritis (chest inflammation) in the past, it’s easier for it to return.

Especially if you have fibromyalgia because costochondritis pain is a common ‘symptom’.

The following tips can help you take the edge off the disabling costochondritis pain spikes when it flares, and help you heal faster and get back to your normal routine.

Quick tips for a costo flare

NSAIDs like ibuprofen or Voltaren gel can help reduce inflammation, and help you to get a handle on the pain quicker than trying to tough it out.

Relieve the chest pain. Hot or cold packs, gentle stretching, warm baths, breathing exercises, and gentle movement relaxes the tight muscles, reduces pain, and ensures good blood flow to the affected areas.

Get help. Ask for help to open doors, lift things, open jars and bottles, clean a house and shop.

Movements that intensely use the chest muscles make the inflammation and pain worse
Avoiding aggravation by asking for help with these movements will let you recover quicker, even though you may feel silly asking!

Rest and recuperate. You can’t keep pushing through a costochondritis flare without making it worse. Rest is most important!

Follow these stretches and exercises to open your chest, relax the muscles, and reduce pain.

Relax and de-stress. Hard to do when you’re in pain, but very effective in reducing pain. Take some time to meditate or run through progressive relaxation exercises. Slow and deep breathing into your belly will also relax the muscles, encourage blood flow and healing. Take a bath, or lie down with a heat or cold pack on your chest, and relax.

Longer term costochondritis?

For those who have chronic costochondritis or as a symptom of another underlying illness (like fibromyalgia), lifestyle changes and more regular stretching and exercises are necessary to prevent bad costochondritis flares.

Stress reduction, posture correction while standing or sitting, avoiding heavy doors, lifting correctly, limiting heavy lifting, using aids for opening tight jars, using a backpack instead of a shoulder back, regular stretching and gentle exercise, a good mattress and healthy sleeping routine, are all extremely important in preventing a flare.

Being overweight can make costochondritis worse, especially if you are a woman. But you need to be careful of what exercises you do so as to not strain the chest muscles further.

Push ups? Ouch!

Plank? Just don’t do it!

Here are some more costochondritis hacks to both deal with and prevent flares.

What are your tips for getting through a costo flare?

Why do I have chronic pain?

Wed, 03 Jun 2015 00:00:00 +0200

Why do I have this pain?

It’s the question everyone asks when they get ill, even when that illness is transient.

That question is often in our minds, as we struggle through day after day, month after month with chronic pain.

You never chose to be in chronic pain.

It’s not fair.

At the risk of sounding cheesy and quoting my favourite glitter-filled childhood movie, “But that is the way it is”.

The papers linked to in this article are all from PubMed, published in respectable medical journals from around the world.

It’s in the genes

Endometriosis is hereditary, along with other reproductive problems. If your mother had it, you can bet your grandmother had it, and you’ll have it. Although pinning down the exact genes is proving more difficult than hoped - several genes increase the risk that someone will develop endometriosis.

In my case, mum probably had adenomyosis, put on hold with a D&C after which she became pregnant. Nanna had something similar. So did my aunt (sister of my mother), badly enough so that . My cousin has PCOS.

Doctors have no idea if fibromyalgia may have a genetic component. However, there is ongoing research in this area, and in fact, a genetic risk factor for chronic pain in humans has been identified.

It’s due to childhood trauma

There is a huge body of research showing that a childhood of sexual, physical and emotional abuse makes lasting physical changes to the body, as well as the ongoing psychological impacts.

Chronic trauma as a developing child will damage the sympathetic nervous system and the hypothalamic pituitary-adrenal (HPA) axis. This messes with your stress hormone regulation and irreparably damages your immune system.

A study from 2003 indicates migraines and bowel problems may also be linked to childhood abuse.

There is a link between childhood trauma and chronic fatigue syndrome (CFS/ME), and another between fibromyalgia and abuse.

This review is an excellent roundup of papers on how childhood trauma can have a long term impact on both physical and psychological health.

Then there are all of the physical health complications that come as part of complex PTSD.

[embed]http://www.youtube.com/watch?v=95ovIJ3dsNk[/embed]

The damage done by urinary tract infections, as a direct result of 14 years of sexual abuse, can not be repaired. My kidneys, bladder and tubes are scarred for life.

Many of my chronic illnesses have links to my childhood of abuse, according to the research - migraines, fibromyalgia (sinusitis, costochondritis, Moreton’s neuromas, Reynaud’s syndrome, sciatica, spine pain), CFS/ME, irritable bowel syndrome (IBS), interstitial cystitis (IC), cPTSD and depression.

It’s because of an unhealthy lifestyle

Boxers probably wouldn’t suffer such high rates of brain problems later in life, if they didn’t get hit in the head so often.

Gardeners, musicians, athletes and crafters would probably not develop tendinitis without the repetitive movements required to perform their jobs.

Of course, there are other unhealthy choices which can lead to chronic illness, like smoking, taking drugs, and drinking excessively. Eating non-nutritious crap for decades won’t do you any good. Neither will keeping your body stationary or constantly holding a poor posture.

Unfortunately, these unhealthy choices are often made because of underlying problems.

Childhood abuse often results in a poor socioeconomic position - you are in a low-income job or relying on welfare. Your socioeconomic group limits your food and medical treatment options. You self-medicate with alcohol, drugs or food to ‘deal’ with the past trauma.

When you’ve been in pain and sick since childhood, the likelihood is very low of you having a support network, a good job, access to treatments, or even just access to affordable nutritious food.

Could it be just bad luck?

Isn’t it just bad luck when you get through the yearly cold and flu season, only to pick up a nasty summer cold?

I’m not so sure. People are less careful about hygiene when the risk of catching a cold is lower in summer.

There are too many factors in chronic illness to put it down to ‘just bad luck’.

Poor hygiene, a stressed immune system through lack of sleep or work stress, exposure to others who have a cold on public transport or in the workplace - these aren’t based on luck.

Of course, there is a tiny sliver of luck which plays a part - do you manage to avoid lung cancer despite being a heavy smoker, avoid liver damage if you are a heavy drinker, avoid kidney damage despite popping NSAIDs (anti-inflammatory medications).

But I’d say that the majority is in genetics, childhood history and lifestyle.

Plus, who knows what the pollution, pesticides, herbicides, and antibiotics in our food chains are doing to us - research on these aspects is not easy to find.

Chronic illness and chronic pain is not a choice

When you know someone who is always sick, understand they do not choose to be in pain.

There are a number of uncontrollable factors that might have caused their chronic diseases.

You can’t choose your genetics.

No one would choose to suffer through a childhood of abuse.

Kids can’t choose the lifestyle, food, exposure to pollutants, or (lack of) medical treatments their parents give them.

Saying ‘snap out of it’, will not make their illness, genetics or history disappear.

Instead of getting upset with them for ‘being so negative all the time’, maybe cook them a nutritious meal, help out around the house, visit them and watch a movie, show some sympathy, some patience and understanding.

Offer a helping hand.

It will make them very happy, I guarantee it!

Do you have a chronic illness or chronic pain?

Will endometriosis re-grow?

Wed, 20 May 2015 00:00:00 +0200

In my case, the answer is yes, without fail. And quickly too.

In most cases, the answer is also yes.

How quickly endometriosis cells grow is different for everyone. Some never have problems again after an operation, having a child or entering menopause. Some must stay on synthetic hormones to suppress the endometriosis. Some have to undergo regular operations, cutting away more and more.

Endometriosis cells are too small to see with a naked eye, or even a magnifying camera in your belly during a laparoscopy.

It’s no wonder that some cells are missed.

Of course, the larger visible growths can be cut away. And this usually resolves a lot of the pain and infertility issues that led to the laparoscopy.

But the tiny, unseen deposits of endometrial cells usually remain.

That’s why it’s important that samples are taken from the ‘good’ sections of the pelvic walls and organs.

If the laboratory finds there are endometriosis cells in many of these samples, you can take a medication to slow their growths, or try to shrink them away.

You can't get rid of endometriosis

Too many people are surprised that even after six laparoscopies, with the surgical removal of endometriosis growths and adhesions each time, three chemically-induced menopauses, and now a total hysterectomy, I still have endometriosis.

Samples taken from various healthy-looking locations inside my pelvis contained these ‘bad’ cells.

Had the lab not tested, I would have stayed off medication - the side effects of constant dienogest (progestin) are not pleasant. But now, I’ll be on Visanne until menopause, attempting to slow the regrowth somewhat, seeing as they don’t want me to have another operation for endometriosis for a decade (I’ve had too many already).

Normally, there is the option of using Lupron or Zoladex to actively shrink the growths. This works well for many people. Unfortunately, I’ve already had 3 courses, and must now look after my lower-than-normal bone density.

My endometriosis will never be fully cured, at least not with the current medication options.

Why can't endometriosis disappear?

Endometriosis doesn’t go away if you ignore it, even after laparoscopic excision, pregnancy or even menopause (chemical or natural), those cells remain.

There is a big misconception that having a child is a ‘cure’ for endometriosis. It’s not. The endometriosis cells remain, dormant during pregnancy due to the nine months of hormonal changes, but still there.

Menopause is also not a cure. Sure, estrogen is reduced as the ovaries shut down. But estrogen is also produced in adipose (fatty) tissue, and many women take estrogen (HRT) tablets to make menopause symptoms milder.

Endometriosis lesions feed on estrogen, and continue to grow, albeit slower when less estrogen is available.

Can we avoid estrogen?

Sadly, we can’t avoid estrogen.

Phytoestrogen naturally occurs in plants and mushrooms.

We are constantly exposed to synthetic xenoestrogens in plastics - water bottles, BPA plastics, plastic wrap and plastic containers.

Parabens and phthalates in cosmetics and lotions are xenoestrogens.

Pesticides and herbicides contain xenoestrogens (atrazine, DDT, endosulfan). Zeranol, a growth-stimulating xenoestrogen, is given to livestock (US and Canada).

The xenoestrogens in the runoff from waste-water treatment and paper wood-pulp bleaching accumulate in fish and wildlife.

As we can’t avoid estrogen, the endometriosis cells can never shut down.

Then what can be done against endometriosis?

The best option is to catch endometriosis early. Limit the spread of the cells and the damage.

Don’t put off having an operation because “it might just clear up by itself”.

Cut out the endometriosis deposits and the tissue surrounding them (don’t burn them - that just spreads the cells around).

Reduce the growth-rate of cells with endometriosis medications (Visanne, Lupron, Zoladex) and/or with pregnancy and menopause, and by avoiding exposure to xenoestrogens.

Never ever ...

Don’t tell young girls that period pain or heavy bleeding is ‘normal’.

Never tell any woman that they are faking the pain, and just seeking attention.

Just because you can’t see endometriosis on the outside, doesn’t mean it isn’t real. It’s debilitating and disabling.

If you ignore endometriosis, it will make you pay, for the rest of your life.

Fibromyalgia awareness

Fri, 01 May 2015 00:00:00 +0200

Fibromyalgia Awareness day - May 12

There are many presentations online by different doctors on fibromyalgia. Some good, some terrible and full of misinformation.

This is the most accessible and common-sense-filled presentation I have come across - thank you Andrew J. Gross, MD.

Fibro research is still pointing to a central nervous system problem as the cause, where pain sensitization increases the frequency, duration and intensity of pain signals, and these signals are not shut off correctly.

No actual cause has yet been found, and treatment must be multidisciplinary. No single treatment works in the same way for two patients - you have to try out many different things - medication, therapies and lifestyle changes. Keep what works the best, and revisit the others occasionally, as your reactions can change over time, or the usefulness of one therapy/medication wears off.

I found it interesting to see the links Andrew made between fibro and other diseases or trauma. Sexual abuse victims and PTSD sufferers more commonly develop fibromyalgia, as do people with other chronic pain illnesses (like endometriosis). So I got the double whammy.

Based on scientific research, as well as observations of his patients, Andrew suggests a combination of medication, movement (aerobic exercise, stretching, strength exercises - with tai chi being particularly useful), cognitive behavioural therapy (CBT) and mindfulness techniques, maintaining regularity in your daily routine and improving the quality of your sleep as all essential tools to better manage fibro pain.

Please share this excellent presentation to raise awareness of fibromyalgia and how it can be managed.

Procrastination therapy

Fri, 24 Apr 2015 00:00:00 +0200

Have you ever procrastinated about fixing your health?

Perhaps you’ve put off seeing a doctor about a problem, following up with a recommended therapy that you know works well, or even taking your medication.

You aren’t the only one!

It’s easy to say, just do those physiotherapy exercises, see a mental health therapist, go for a walk or to the gym, join a water aerobics class, eat your greens. Much harder to do it!

I struggle with this on a daily basis. I have stretches for my neck, back and toe. Meditation to improve sleep and indirectly reduce pain. I can usually do a few days in a row, before the procrastination demon wins for a day or two.

Walking/strength/core exercises have taken a back seat while I recover from surgery, but I suspect the gynecologist will give me a green light next week.

There’s one exercise I’ve been putting off for months. It’s too scary, confronting, stressful. Yet I know, from past experience, that if I work through it regularly, my head will be in a much better place.

PTSD and procrastination

I had help and prodding from regular psychologist visits, over the course of 15 years or so, and thought I had buried the PTSD. I’d made heaps of progress, and although occasionally I was mildly triggered, I was dealing well with every day life.

Complex PTSD (Post Traumatic Stress Disorder) is a difficult beast. It takes a long time to chip away at the edges. And when you think you’ve got it finally under control, something can send you flying backwards.

It’s an expert at triggering procrastination.

Early last year, I had to write a very detailed account (legal affidavit) of the abuse I suffered through my childhood. It was difficult enough to write it out in such detail - I hadn’t ever gone into such detail in writing before

But for many months (nearly a year) after this, I suffered panic attacks, nightmares, night terrors, and severe depression from the overwhelming terrible memories.

Going outside was difficult, interacting with people was harder, more so, family. Going to sleep was the worst.

Drowning myself in other worlds, single-player computer games with enough depth to last months of playing, helped to crowd out the nightmares, and reduce panic attacks and push the memories away, somewhat.

However, more direct work is needed to get back to the level I was before though.

I have a CBT workbook (Cognitive Behavioural Therapy), specifically for self-managing PTSD. I’m confident I can manage this, with a little support, due to the many years of therapy I’ve already gone though. I’ve even done the less threatening exercises at the beginning. I do have access to a therapist as my safety net, if/when the exercises have bad results.

But I’m still putting off the harder, confronting work.

Procrastination hacks

My psych used to say I’m too smart for all the games and tricks you can play on yourself to beat procrastination:

rewarding yourself after completion.
focusing on how great you'll feel after you finish.
setting yourself a deadline.
allowing yourself something nice before the nasty task.
forbidding something you enjoy until it is done (I didn't eat any chocolate for a month!)
focus on starting - just doing a few minutes to prod yourself into continuing.
using a timer or the Pomodoro technique.
breaking it into baby steps (what do you do when even the baby steps are too confronting?)
making your 'work' environment a great place to be, with music, blankets, candles, scent, etc.
replacing 'have to' with 'want to' (but you have to believe it!)
not striving to be perfect.
getting an accountability partner (who is brutal enough to call you on your excuses).
throwing 'should' out of your vocabulary, and not feeling guilty.
focus on doing only one thing at a time.
tracking daily activities, or automatically tracking computer work.
blocking out all distractions (removing distracting apps and games, blocking websites, switching access to the internet off).

She said, to borrow a very well known phrase, “Just do it!”

That got me through university, a messy time in my life, full of hard work.

But that simple phrase is failing me now, with this messy, difficult task.

Accountability works

Being held accountable worked for losing 30kg or so, several years ago, when I tracked my steps on WalkerTracker and joined competitions. Unfortunately, I didn’t keep it up past the 3 year mark when my illnesses and pain worsened.

So here I am, committing publicly, to making progress in the PTSD workbook.

To do that next exercise, even though it scares the hell out of me.

What are you putting off?

No tricks, no games.

Just do it.

Dealing with the ups and downs

Fri, 17 Apr 2015 00:00:00 +0200

Chronic illness isn’t as constant as you might imagine. There are ebbs and flows, ups and downs.It’s so easy and tempting to get your hopes up on the good days, desperately hoping that this is the end of the pain, especially when you have a run of good days.

Only to have them tragically dashed when a bad one arrives.This depressing cycle repeats itself, not just for the one with the chronic condition, but also carers and loved ones.I can only speak as one who has several long term illnesses, 25 years or more for some of the conditions. I’ve often felt my body is at war, never wanting me to be comfortable or happy. A few times, symptoms have receded and given me hope that I could return to a ‘normal’ life, but alas not.If you can’t stop it, what can help lessen the impact?What can make the good times even better? <h3>Focus on the present</h3> I try to take each day as it happens. Something that took many years to learn, and I still rail against the bad periods.

If I wake up on a high pain day, I let tasks slide, say no to requests (where reasonable), and focus on self-care. Very occasionally, pushing through to enjoy an important event or to teach a class. I’m getting better at not beating myself up when I miss out on events, or cause more pain if I decide to do something.

Focusing on just the day ahead, not planning into the future (who knows how you’ll be at that time), and not pining after the better periods in the past, reduces self-beating.

In the last few months, I’ve found meditation to be a great trainer. When the inevitable future worries or past longings bog me down, I take a few minutes to sit, breathe and focus on my body, as it is right now. Although I’m not good at it, I let those thoughts float away like clouds in the sky, or ripples on water.

When you focus on a good day, it’s even more enjoyable.

Enjoy a little something

I have a bunch of low-energy things I enjoy. Reading fiction, listening to music, drinking a cup of good quality tea or coffee, eating a delicious truffle chocolate, gaming with feet up in bed or on the couch.

Some other enjoyable little things are actually therapeutic: soaking my hands or feet in hot salty water; steaming my head with eucalyptus or lavender oil; relaxing, eyes closed, with a heat pack on my neck or back; taking a long, hot shower.

I used to have some more crafty things like drawing, stitching, baking or preserving, but sadly I’m having trouble with one of my wrists.

Having at least one good thing to look back on at the end of a day makes the bad days seem less awful, and the good days better!

Go mindfully through the day

Being mindful of yourself, what you are doing and your surroundings, helps to ground you in the present. Just don’t start beating yourself up for the things you find difficult!

I’ve always an absent-minded mega-kutz, injuring myself on all sorts of things. Jamming finger joints when trying to open doors too quickly, dislocating toes while walking on carpet (!), falling over on uneven ground, breaking toes by misjudging corners, bruising myself left, right and center. And I cursed myself every time I was clumsy.

Moving mindfully has reduced ankle and knee pain as I pay attention to how and where I step. Burning myself less often on hot things from the oven or stove. Avoiding sharp corners. Lifting things carefully.

Of course, it’s difficult, especially with a new symptom/injury. The number of times I’ve recently picked up a bottle or the kettle, or tried to open a jar, and made my poor wrist scream for mercy, shows I need to work on this. But I’m not berating myself for being forgetful as much as I once did. Or, at least, I’m trying not to!

Be grateful for something

It’s awfully difficult to be grateful for anything when you are hiding in a dark room, head pounding, stomach churning, fighting another dreadful migraine.

On those days, I can only find the smallest things - comfy flannelette sheets, good loose tea, purring cats, heat packs, lavender hand cream, even just the darkened and quiet room.

Ending or even starting the day being grateful for a few things, helps remind myself to focus on the present, enjoy the little things, and be mindful in how I move.

Bring present, mindful, grateful and finding small things to enjoy, on good days and bad have helped me better accept my chronic conditions, on most days.

What things do you do to reduce the burden of chronic illness?

An impatient recovery - hysterectomy

Wed, 25 Mar 2015 00:00:00 +0100

Surgery, and the recovery period, shows you just how impatient both yourself and the world is.

It’s incredible, just how many people have asked me if I’m all better, fully healed, going for long walks and social outings, and back at work already. Yet I haven’t been cleared yet to lift anything heavy, or even take a bath or go swimming - one of the lowest impact exercises.

And I’m railing against these restrictions.

I crave a hot, salty bath, many times a day. It would help with all the muscle aches and pains from changing weather causing the fibromyalgia symptoms to flare. It would help relax my upper back and neck muscles which are pulling my cervical spine out of alignment again and causing nasty headaches and wrist neuralgia. It would encourage sleep!

My first social outing was to a family dinner last Saturday, 5.5 weeks after the hysterectomy. I was feeling quite ok, and considering contacting my students to take interim lessons before I go on the rehabilitation retreat that the hospital promised me. I mentioned I was impatient, didn’t I?

I lasted only two hours. Two hours!?!

And I was sitting down most of that time, albeit in a position which squished my belly more than usual.

The pain and cramping started to build, I found it difficult to follow one conversation amidst the many that were buzzing around me (not one of my skills at the best of times, let alone in a non-native tongue).

Teaching even one 2.5 hour class, where I’m standing most of the time and being energetic and extroverted, is clearly completely out of the question.

Oy. Reality hit hard.

It’s no wonder the hospital aren’t rushing to organise the Anschlussheilbehandlung (rehab retreat). I need to first be allowed to swim (fully healed inside and out), and have the energy to go to classes throughout the day, from breakfast until dinner.

I’m still impatient to have energy, to take a bath, to be able to get out and walk lots, to garden and just do things. But I’m going to be gentler on myself and give myself more time to heal.

Instead, lots of meditation, gentle stretching, writing, reading, and things with a lower energy requirement are in order.

Hysterectomy recovery symptoms

Tue, 03 Mar 2015 00:00:00 +0100

This post contains frank symptom descriptions. If you’re squeamish or don’t want to know the details, don’t read on!

It must have been much scarier in times past, when recuperating after having major surgery.

You would worry if any unexpected, odd symptom was ‘normal’. You’d wonder if you should call the doctor, yet again.

At first, information sheets and pamphlets were produced to allay concerns, stop the flood of calls and visits for non-problems.

But now, there’s the internet.

Of course, there is a lot of misinformation and complete garbage ‘medical’ advice on the net.

A pinch (or handful) of common sense is necessary.

But then again, you still need common sense when doctors give you advice.

I spent 10+ years with doctors and surgeons saying the endometriosis/adenomyosis symptoms and pain were all imaginary.

My common sense said they were wrong, so I kept hunting for more knowledgeable doctors.

Demystifying a hysterectomy

I’m very grateful to the forums over at HysterSisters - almost every question I’ve had in the lead up to my operation and during my recovery has been asked and answered already.

The accounts of women, just like me, struggling with the same issues have helped keep (most) of my worrying, and my partner’s panic in check.

Extreme cramps, a host of bladder and bowel issues, prolapse concerns, intermittent slight fever, severe headaches, dreadful breast tenderness, odd bleeding from the second week - all of these worries have been chased away by searches through the forum.

The questions that I haven’t found answers to:

Why is my neck still so stiff and sore from the central venous catheter?
Will I be granted an Anschlussbehandlung (rehabilitation program)? Especially as I haven't yet earned enough to be required to pay into the federal retirement program funding the rehab program.
What are the withdrawal symptoms of Visanne (dienogest)?

Symptoms after my hysterectomy

Actual symptoms I’ve had since the operation include:

bowel - anal prolapse (this seems to always happen after colonoscopies to me now), extreme cramping with wind/bowel movements (as bad as before the hysterectomy). Difficulty voiding due to pain in cuts/lack of muscle control, Lactulose helps. But no bleeding yet!
bladder - pain and cramping on urination, urgency yet difficulty relaxing enough. Thankfully no UTI (perfectly clear and light coloured), so I chalked this up to inflammation. Ibuprofen helps, but the pain returns when I stop taking it. Kegel pelvic muscle exercises have also helped.
stomach - nausea and my first ever bout of heart burn (perhaps due to the Lactulose)
bleeding - light pink mucous to start with, now brown. Apparently this is a common symptom to appear at week 2 after a vaginal total hysterectomy (removed cervix), as the stitches around the vaginal cuff start to loosen and dissolve.
skin - first severe peeling, then bumps a little like an allergy. I put this down to stopping Visanne (my acne has almost gone!) and actually being allergic to some of the sticky tapes used.
breasts - ballooning, extreme pain in the nipples. Probably also due to stopping Visanne (estrogen dominance returning, as I kept my ovaries).
plus other random things like bloating, weight fluctuations, pulled stitches, leg cramps, mild fevers, pain when anything puts pressure on my abdomen (like wearing trousers).

Of course, other fibro symptoms have popped up - sciatica is worse for sitting/resting a lot, costochondritis is worse from the gas in the abdomen, side sleeping, and having arms in front of me too much.

Headaches, neck and jaw pain are worse from the lack of physio treatments for my dodgy C2. The supporting muscles were probably further aggravated by the central venous catheter.

A normal recovery

I’ve reassured myself with the range of ‘normal’ recovery times (3-8 weeks) over at the forum, and through friends who’ve had similar procedures.

At almost 3 weeks, I’m not yet very mobile (10 minutes gentle walking is my limit), and can’t sleep in my preferred position on my belly. But I can wander around the house, shower, grab a snack, spend some time at the piano, and play footsies with the cats with some ease.

Cooking a full meal or baking is not doable in one hit, although I suspect my problems with gripping a knife, or opening bottles and jars, is due to my old fibromyalgia/nerve problems being opportunistic.

I have to switch up activities - don’t sketch, game or type for too long (keyboard in lap is very poor ergonomics), spend only a short time on the piano or stitching every few days, stand up and stretch gently throughout the day. It’s easy to remember to get up and move regularly when dealing with an irritated bladder!

Of course, some days are better than others. If I overdo it, my body reacts obviously - the spotting, fatigue and pain all increase for a day or so.

But on the whole, and compared with my previous five (much simpler) endometriosis laparoscopies, I am recovering very well from the hysterectomy.

Pressure to recover

Why then, do I let skepticism and pressure from family members upset me? Habit perhaps?

These same people have called me a hypochondriac, doubted my pain, disbelieve the diagnoses of specialists. Their ‘belief’ that I should be back at work, completely healed and mobile, should be the least trusted.

Yet, I let them make me angry and upset.

Common sense tells me a little more distance may be necessary.

Anger is not good for recovery.

Neither is sneezing!

Back home to recover after a hysterectomy

Fri, 20 Feb 2015 00:00:00 +0100

I’m back at home, recovering well.

It didn’t go as I had planned - I had to stop eating immediately, take Fleet, and have a colonoscopy. 48 hours is a long time to go without food.

I got prepped for a ‘big’ operation, with a central venous catheter in my neck, after they finally found a visible vein (in my thumb) and knocked me under. Turns out, the big catheter wasn’t needed!

The operation

They didn’t find anything but ‘redness’ inside my bowel, and not where they expected. That means there was no visible reason for the monthly bowel bleeding, but also no bowel resection. Recovery will be quicker.

So, it was a textbook total laparoscopic assisted hysterectomy, with lots of double checking for my left ureters (discovered they are fully duplicated - special!)

I was having too much fun playing Elder Scrolls Oblivion in my head, and refused to wake up for two hours more than expected - just one more dungeon. Sorry to S and M who were (impatiently) waiting for me!

The recovery in hospital

Drank water and chamomile tea like crazy, and the bladder catheter came out the next morning. Thankfully, this time I had no problems. There’s always the risk of an UTI, and I certainly didn’t want one!

The hated neck catheter came out later that day. I still have a stiff neck, more than a week later!

Residual CO2 gas pain was less this time - perhaps the surgical techniques have improved, or they sucked the gas out more thoroughly.

I had very little pain, apart from the thrombosis injections - they burn! But I think that was due to the slow-release pain tablets (oxycodone). I certainly missed the pain killers when I got home.

A dose of Lactulose kicked my bowels out of holiday mode, and after a day of being up and mobile, the doctors let me leave, one week after admission, 5 days after the hysterectomy. I had to promise not to clean any windows or go to any fitness classes.

My German skills were thoroughly put to the test - few doctors and nurses were comfortable speaking English. Plus I had several long conversations with my room-mate.

Zu Hause

The trip down the Autobahn was OK. The last little bit through the hellishly bumpy streets was pure torture. The stairs were easy in comparison.

Bowel pain has remained at its spikingly high levels, unchanged, but also not worsened. I need to wait and see if the cyclical bowel bleeding continues. If not, then good!

Fatigue is definitely much, much worse. Belly pain (cuts/external pressure), overall fibromyalgia pain, and headaches are pretty bad. Unfortunately, my usual low dose codeine doesn’t seem to help much - perhaps I got used to the hospital strength stuff. So, I’m toughing it out and trying not to take anything.

I’d love to go to the physio and get my neck (C2) worked on to chase the headaches away, but that won’t be for some time.

It will be great when I can lie on my tummy again, and not have to defend myself from (heavy) cats climbing on me!

Need to keep reminding myself - it’s only been a week since the operation, take it easy, rest and recover slowly.

My body will be better than before the surgery, but it will take time to reach that point.

Day by day - introducing myself

Fri, 16 Jan 2015 00:00:00 +0100

For most of my life, I’ve been managing health problems, day by day. Both physical and mental. And I’ve been doing a relatively good job, despite worsening illnesses.

Hi! My name’s Kymberly Fergusson, and I’m a chronic pain and illness sufferer (manager) and childhood abuse survivor.

Just like everyone, I have bad days and good ones.

This blog is my way of sharing how I manage to keep going, day by day.

A little history

From the time when I was born, until I was 14, I suffered daily sexual, physical and emotional abuse from my father. It left me with severe post traumatic stress and a variety of health problems.

I started my journey out of the abuse situation at 14 by seeing a social worker, all by myself. Then I got myself fostered and moved out of the toxic family situation at age 17, to focus on completing school.

Throughout my teens and later, I’ve been a regular visitor to doctors and specialists, trying to diagnose the huge range of painful physical illnesses that have disrupted my life.

The ongoing illnesses I’ve been diagnosed with and have had to learn to manage: recurrent cystitis (age 5 onwards), sciatica (age 11), costochondritis and migraines (14), eczema and severe acne (15), depression and PTSD (17), chronic sinusitis and CFS (19), Moreton’s neuromas, Raynaud’s syndrome, fibromyalgia, neuralgia and irritable bowel syndrome (22), bruxism, duplex left kidney and damaged kidneys (23), endometriosis (24), adenomyosis (28), endometriosis of the bowel (36), meniscus tear (37), cervical spine injury to C2 (38), plus a host of more transient illnesses and allergies.

I’ve had 5 laparoscopies for endometriosis, 3 chemically induced menopauses, and tried hundreds of medications and therapies. Anti-cancer medications like Zolodex are not fun, let me tell you!

Over time, I’ve been forced to reduce my working hours to almost nothing as the diseases have worsened.

Focusing on now

It’s easy to beat yourself over the head with the past. With the people who didn’t take you seriously - family, doctors, specialists. With the therapies, operations, treatments and medications that didn’t work. With the jobs you have had to leave. The work left undone. The appointments missed. The people you let down. The time you couldn’t spend doing things you enjoy.

But it doesn’t help you deal with the situation right now.

It’s taken me a long time to get to this point, and I still do beat myself up. Less often than I did.

Right now, I am focusing on getting rid of the adenomyosis. It has become far too painful to manage with medication (Mirena/Visanne).

In February, I will have a hysterectomy. They will clear out any adhesions and endometriosis that have grown back (again) in my pelvis. At the same time, the surgeon will remove the endometriosis that has invaded the bowel. It might be a simple, quick operation, or it may be very complicated, with a bowel resection and colostomy bag.

A ‘Kur’, or health retreat, is planned for my recovery. I’m not allowed to work for several months, just in case the operation is complex and to help with recovery.

I don’t really know what to expect, from either the operation, or the Kur.

I am definitely very anxious.

I try to focus on the positives - at least one problem, the adenomyosis, will be gone for good. The Kur will be a good opportunity to improve my mediocre German skills.

Once recovered, I’ll be able to lie or let my cats curl up on my belly. I’ll have time to read, study, and do some things I’ve been putting off while putting my energy into teaching.

It’s important to focus on now, on the positives, and limit looking back into the past.

It gets you through, day by day.

Goodbye Lupron

Wed, 14 Aug 2013 00:00:00 +0200

This is an older post, republished from an old, now dead blog.

My last month of Lupron is over and done with. And I’m not sorry to see it go.

I won’t miss the intense and constant headaches. The cravings. The weight gain. The hot flushes in hot weather. The moodiness.

Lupron didn't help

As it hasn’t helped the bleeding from the endometriosis in my bowel, I stopped the injections at 3 months, instead of doing the full 6 month course.

No point going through head-splitting hell when it wasn’t doing what we wanted it to do!

So, back on the combination of Visanne and Mirena. They say it should stop all period bleeding, except for the monthly bleed from the bowel endometriosis, like before.

But happily, without the terrible side effects of Lupron!

Mirena replacement

My current Mirena is nearly out of date, so it will be replaced at the end of this year. Most likely the hormones that it releases have been too low a level for about a year (as happened with my previous one), which would contribute to the more rapid growth of adenomyosis, and regrowth of the endo.

But the doctors stick rigidly to the rules here - it has a recommended lifespan of 5 years, so they will replace it after 5 years and not earlier, unlike in Australia. My specialist surgeon there had said the hormones start decreasing around the 4 year mark.

I’ve convinced them to put me under for a short time while they remove the old and insert the new. They wanted to do this without any pain killers, let alone a short general anaesthetic.

I did that once, and nearly passed out from the pain. I have never felt anything that bad in my life!

Edit - the local hospital gynaecologist/surgeon changed their mind, and said they would not replace it until it was about 10-12 years old, and then, the procedure would be done in a chair without anaesthetic.

I went and found a good endometriosis specialist surgeon in Berlin after that visit.

Hello again Visanne

The re-start of the Visanne has been a bit rough, although I can’t point to the causes of the strange symptoms.

Dizziness, almost fainting, occasional headache, and complete lack of hunger. Could be stress, exhaustion (moving house), hormonal re-balancing, a virus (my immune system is shot) … any number of things!

After I’ve moved house, when the cats are resettled, I have a trip back to Australia. I’ll be glad when the busy-ness of the last and next few months is over, and things are back to ‘normal’.

Starting Lupron

Thu, 16 May 2013 00:00:00 +0200

This is reposted from an old, now dead blog.

I've spent 9 months trying the Visanne tablet in addition to the Mirena IUD to control my endometriosis growth and cyclical bleeding from my bowel. It hasn't worked. So now the gynecologist has switched me to a 6 month course of Lupron (technically, Enantone-gyn).

Lupron is a cancer treatment drug that is also used to shut down the hormone production system in women. It effectively pushes them into a chemically induced menopause.

I’ve already been on the related GnRH agonist medication (Zoladex), so I know what to expect.

Of course, you get all of the menopause side effects, plus a host of others not normally so strongly associated with menopause. The standard side effects include:

poor temperature regulation
hot flushes, moodiness
loss of libido

If Zoladex is anything to go by, I’m expecting serious nausea, dizziness, headaches, weight gain, and a significant increase in fibromyalgia pain.

It is meant to stop endometriosis growth in its tracks, and can shrink the size of the adenomyomas (temporarily).

Lupron and Zoladex are temporary treatments

Unfortunately, the bowel endometriosis symptoms appeared less than 2 years after my last 6 month course of Zoladex. So this is a very short term treatment.

Endometriosis will always re-grow.

I was given the choice, wait for another 4-8 weeks until I can get an opinion from an expert in endometriosis about the next step (surgery), or start now.

I decided to start it now, a month before my appointment in Berlin for two reasons - it just might stop the bowel bleeding, and it will give the specialist another bit of information to work with.

I’m also keeping the Mirena in for the time being. It’s due for replacing at the end of the year, so they don’t really want to take it out yet. Especially as I may need an operation of some kind or another (do it all in one hit!)

Starting Lupron - nasty injections

Right now, my tummy hurts at the injection site, even though it was a tiny needle. It was just a powder/liquid mixture, unlike the solid slow-release tablet of Zoladex, and therefore didn’t need any local anaesthetic.

But I think my poor body hates injections, it’s already going blue.

Of course, I’ll add updates as I experience side effects, and success (cross fingers).

Hopefully Lupron will surprise me and be less nasty than Zoladex.

About

Welcome to Still Pain, where I blog about working and living gently while wrangling a host of chronic illnesses.

Hi, I’m Kym, a freelance writer, translator, editor and language teacher, with wide ranging hobbies and interests.

Originally from Melbourne, Australia. Now living in Leipzig, Germany, after a detour via Fukushima, Japan (yup, I was there during the earthquake).

I manage multiple painful chronic illnesses and auto-immune diseases, and am a breast cancer and cPTSD survivor.

You’ll find discussions of my illnesses, treatments, various medical systems, and specific doctors (anonymised) on this blog, along with how I work and chase a multitude of hobbies and interests gently with a good amount of pacing.

Note: I am not a doctor or physical therapist. Please see your doctor to identify the actual cause of your pain, mental or physical, and determine which treatments are appropriate for you. I do not take responsibility for the outcomes of any action you take based on information from this site.

Why “Still Pain”?

Still is a word that defines chronic pain in many more ways than just the adverb meaning ‘from the past and into the future’.

Still is quiet, peaceful, at rest, calm, subdued, and even is a synonym for ‘and yet’, ‘even though’, and ‘nonetheless’.

I have never known life without pain of some kind or another. It waxes and wanes, with the moon, with the seasons, with therapies and medication, and over the years. But it’s always a minimum of a 4/10. And none of it is curable.

It will only ever be still there.

Hormone: endometriosis, PCOS, fibrocystic mastopathy, lipedema, lymphedema, migraines, two types of breast cancer. And now, finally, menopause.

Inflammation / auto-immune: spondyloarthritis, psoriasis, IBS, enthesitis, chronic sinusitis, blepharitis, meibomitis, gingivitis, costochondritis, wrist tenosynovitis, shoulder bursitis, sciatica, Moreton’s neuromas, a torn meniscus and a slippy C2 joint in my spine (subluxation).

Secondary caused by the above: fibromyalgia, headaches, Reynaud’s phenomenon, bruxism, stage 4 kidney disease, neuralgia, demodicosis, fat necrosis in the transplant, and (unsurprisingly) high blood pressure, anxiety, depression, and insomnia.

Add in a number of allergies, a couple of different hernias, GERD, tinnitis, and cPTSD from a 14-year childhood of daily sexual abuse.

I can overwhelm any doctor or specialist in a matter of minutes.

But I’m still here, gently working, living and enjoying life.

Hobbies?

I love cats, tea, coffee, and good food - both the cooking and the eating.

My vast hobbies would take a few lifetimes, if they could: sewing, knitting, crochet, spinning, weaving, gardening, photography, reading, writing, anime, 3D printing, miniature painting, art of many types, music (both listening and playing), and gaming.

I am still shielding - I am immune-suppressed with stage 4 kidney disease. It is not safe for me to be near people who don’t take strict pandemic precautions.

Support me

Hire me: I write, edit and translate from German into English for freelance clients, either independently or through Upwork (if 3rd party tracking is required).

I do not use AI tools to generate or proof content - your work will not be ingested into a training database and will remain confidential.

Specialising in medical, legal (data privacy and contracts), IT, and any technical content, and double-checking academic references - important these days as AI tools fabricate fake references.

I’ve also written extensive marketing and economic content.

I’m open to art commissions and looking for new freelance writing/editing/translation clients.

Want a handspun, or handwoven gift, artwork or set of cards? Contact me!

Visit LearnedWords.com for my portfolio and more information.

Patreon: Originally started as a way to make ESL conversation class resources available to language teachers, but morphed into following everything that I’m learning and the creative projects I do along the way. If you want to support me, or follow my projects and learning journey, I’d love for you to join the Learned Words Patreon.

Ko-fi: A shop front for bundles of ESL language resources for English teachers and students, as well as original artworks for sale. You can also tip me a coffee.

Mastodon: Toots about any topic that current lives in my head and needs an out. On a small instance at old.mermaid.town/@kymberly

Youtube: Occasional garden videos and snippets from daily life, in a slower 1-second-a-day style. Subscribe and enable notifications if you enjoy my videos.

Zazzle: Some older photography on gift cards and other products. This may move in the near future.

I am extremely grateful to you for supporting me with your time, attention, and/or financial support.

Disclaimer: Occasionally I will endorse products, books or services which I personally use and love, for which I may receive commission.

Read the full disclaimer, copyright and privacy policy

Contact & links

Freelance writer, editor, translator: LearnedWords.com or on Upwork
Commissions for weaving and art, items for sale: Ko-fi shop
Patreon (creative projects & ESL): LearnedWords
Email: kymberly@learnedwords.com
YouTube (garden & projects): @KymberlyFergusson
Mastodon (Twitter replacement): old.mermaid.town/@Kymberly

By contacting me by email or via direct message on any social media or content platform, you consent to me storing your personal information (email address, name, or username where applicable).

Disclaimer | Copyright | Privacy

In the context of the new European legislation, General Data Protection Regulation (GDPR), I have updated the privacy and cookie policies below (May 2018).

Copyright
Disclaimer
GDPR compliance and your personal information
Cookie policy

Who am I?

Kymberly Fergusson is a technical writer, editor, translator and English language teacher, based in Leipzig, Germany. She also manages many chronic illnesses. You can contact her at kymberly@learnedwords.com.

This website’s address is https://stillpain.com

Copyright

The content of this site is copyright Kymberly Fergusson, including all photos and artworks unless otherwise specifically attributed.

Disclaimer

The views and opinions expressed on this site are purely my own, or in the case of guest blog authors, their own. I will always be honest in all of the content I publish.

I am not a doctor. I suffer from multiple chronic illnesses and will report on treatments that I have tried that may or may not have worked for me. Please consult with your doctor before trying any treatment or therapy mentioned on this blog. I am not responsible for anything that happens based on your actions after reading information on this website.

This site occasionally contains affiliate links to products and services I recommend, which means when you click on a link that I recommend, I may receive a tiny commission. Not every link is an affiliate link (one I get paid for), but some are.

I am a participant in the Amazon Services LLC Associates Program and the Amazon EU Associates Program, affiliate advertising programs designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com and amazon.de respectively.

If I have been gifted something for free in return for a review, I will mention this at the top and bottom of the web page or blog post. If there is no such disclaimer at the top and bottom of the post then I have not been received any form of compensation for writing it.

If you have any questions about my affiliation with a certain product, please contact me for additional details.

Privacy Policy

With the GDPR coming into force on 25 May 2018, I want to tell you about how I gather and manage your personal information. I will always treat your personal data with the utmost care, and will never sell your information, or knowingly pass your information on to a third party without your consent.

The information I collect

When you visit this website

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I keep emails and direct messages for up to 5 years, after which they will be routinely deleted, unless they need to be retained longer for tax or legal reasons. On content and social media platforms, you can delete your own comments and likes, or you can contact the service provider to do so. I use Google’s Gmail to receive and store emails, with all analytics disabled. Google may store the data in the U.S. and is certified under the E.U.-U.S. Privacy Shield. Gmail - privacy policy

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You can block advertising and the trackers used by advertisers by using browser extensions for desktop computers or private web browsers on your mobile device.

Clients, customers and students

Invoices and receipts contain personal information, and are required to be retained for tax and legal purposes. I keep these in both digital form (on my computer and backup drive), and in print. These records are deleted and shredded shortly after the retention time has ended.

If you have sent a payment to me via Paypal or with a bank transfer, your personal data will be recorded in those platforms. I do not have access to or control over this data, and therefore cannot modify or delete it.

In the course of working together, we may used shared ‘cloud’ services to exchange files and information, like Dropbox or Google Drive, or task management systems (like Monday.com or others), or a freelancer platform like Upwork. At the conclusion of our contract, I shall endeavour to immediately remove my access to your information where possible, and only retain that which may be needed for tax purposes. Most of these platforms are likely to use servers in the USA - please review their privacy policies and consent to them processing your private information before you contact me via these platforms.

Patreon subscribers

If you subscribe to my Patreon channel, Patreon will share with me your name, and potentially your address if you have signed up for a level with postal rewards and store this data on servers in the USA. You may also be invited to my Discord channel, where information is also stored on servers in the USA. Any information you share with me by commenting on posts on those platforms, or contacting me privately will be maintained by those platforms. Please review the Patreon privacy policy and the Discord privacy policy to consent to these platforms processing your personal data before you contact me via these channels.

Who do I share your data with?

I will comply with any and all court-ordered legal requests for data.

If you have sent me an email, Google (Gmail) will store your email. If you have subscribed to my newsletter, MailChimp will store your data. If you have contacted me via any other platform such as social media channels or instant messengers, the respective platform will store your data.

In the case of a data breach

If my computer, devices or service accounts have been compromised, I will notify you as required by the GDPR.

The rights you have over your data

You have the right to access, review or delete the personal information I have stored. Please send an email to me at kymberly@learnedwords.com. I will retain your request for review or deletion as required to do so by the GDPR.

How I protect your data

This website uses a secure, encrypted connection to communicate with your device (https). Where supported, I use two-factor authentication methods to access services and platforms, and strong, unique passwords.

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