update: 16 march 2023

For the first time, I'm seeking a health accommodation from my employer, related to my fibromyalgia. This makes me feel... kind of defeated. 

My condition hasn't gotten worse, but an important coping strategy was removed: I returned to working a five-day week, in the workplace. This is simply too much. I need a four-day week.

On my previous job, because I had significant responsibilities with my union, I had one extra day off from my paid employment each week. Rather than use that time for my union duties, I would work longer days, then use that extra day as rest time. I found that the big blocks of rest were more important than the longer days.

On my current job, at first I had one day each week when I was working, but all my library branches were closed. Working alone, I could manage the five days. Then came covid and working at home. Again, working alone, in quiet, at my own pace, I could manage.

Then my schedule was changed to align with when my branches were open -- no more closed day -- and I was no longer able to work at home, at all. 

Working a five-day week in the workplace is simply too much. I end up calling in sick once a week, or using a vacation day. If there's a holiday that falls on a day of work, that's my four-day week. If the holiday falls on a day I don't work (as most do, since I'm off on Mondays), I take my day in lieu during that week. If I do work five days, I spend the entire weekend destroyed and recovering.

I tried everything to get a modified schedule -- everything but an accommodation -- but there was no give.

Finally, I felt I had no choice. Getting the medical documentation was easy. Now I'm in the process of working with the HR department, the Director, and my union, to get the accommodation.

I don't like discussing my health issues with HR or the Director. They are decent people -- caring and compassionate -- but I don't like disclosing my health issues to them. It makes me feel vulnerable and small. There's also a power imbalance: they are not disclosing their health issues to me.

I'm fortunate to be working in an environment where I'll get the accommodation without too much of a fight, and there's unlikely to be any negative reprisals. I remind myself that disability activists and labour activists fought for this right, and I would encourage anyone else to use it. 

It's just hard to cut myself the same slack.

covid silver lining: brain fog is finally being recognized

I saw this article about brain fog in the New York Times. I'm glad to see this is now recognized as A Thing. 

The cognitive impairment known as brain fog is fact of life for people with fibromyalgia (among other conditions). I've had recurrent brain fog for decades. When it's at its worse, I can't do anything except watch a movie or show. Can't read, can't drive, can't focus. Most days I can manage with frequent micro-breaks. 

With my whole fibro regimen, I've greatly reduced the frequency and severity of these episodes.  the story linked above has good advice for coping strategies, and ways to bolster your general health. 

I still struggle with it. But I've also accepted it as fact of my life. Everyone has challenges. I'm fortunate to have many privileges and strengths to compensate.

update: 10 march 2022

It's interesting to read my last update, from March 2021, in light of how I'm feeling right now. 

Over the past year, I've had a pronounced uptick in PTSD symptoms, anxiety, insomnia, and overall body pain and tenderness. 

There's no clear reason for this. Some of it might be stress-related -- but when is there not stress? Why would stress exacerbate symptoms now, but not always? Who knows. Perhaps these conditions fluctuate with no clear cause, and we ascribe causes after the fact, finding patterns amid randomness, as humans do. 

I've started taking 5-HTP twice daily, as there is some evidence that it reduces fibromyalgia pain. I can't really say if it's helping or not. My symptoms fluctuate, and there are so many factors, it's sometimes impossible to discern if a particular treatment is having a positive effect. I'll probably take it for a few months then decide whether or not to continue.

The other thing I'm doing is getting more rest. This means lowering my expectations of myself in any given day -- working less, working at a humane pace, taking time off when I need to, whether officially with sick time, or unofficially by quietly doing less.

In general I'm ticking along, and feeling fortunate to have all the supports I need, and the wherewithal to manage them. And/but it does get tiring sometimes.

update: 20 march 2021

It's strange to see the date of my previous update: shortly after the covid lockdown was announced. Here we are a year later, after so much uncertainty, and so much loss for so many people. 

There's no shortage of reflections on the pandemic. We don't need another one here.

During this past year, I had bariatric (weight-loss) surgery. I've lost 45 pounds so far, and am still losing weight. This has resulted in many positive changes in my health. I'm getting much more exercise than I did pre-surgery, and that helps keep my energy levels good.

I had been experiencing a lot of knee and low-back pain. Weight-loss, a proper stretching regimen, and more exercise has drastically reduced this.

The weight loss has had no effect on my fibro pain, or any of my needs associated with fibromyalgia. I haven't been able to cut down on any of my medications or supplements, or to tinker with my sleep regimen at all. 

This is as I expected. I've had fibromyalgia since at least 1998 (more likely the early 1990s), and had been gradually gaining weight only since around 2009. But if there was any question that there was a connection, it's been answered.

I still have not moved on EMDR. It seemed ridiculous to pursue that during the pandemic. I'm putting it on my radar for the upcoming year.

update: 27 march 2020

I've just read a remarkable book: The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk. I wrote about it here on wmtc. I highly recommend it.

Van der Kolk writes convincingly about the link between PTSD and health. With the brain in a constant or prolonged state of emergency, the body reacts in many predictable ways. When he lists the health issues that are associated with PTSD, fibromyalgia is always high on the list.

He also writes of several "pathways to healing," and has a lot of strong evidence of the positive effects of EMDR. As is often the case, this information came to me at the right time. I suddenly feel ready and willing to take another step.

I'm going to try EMDR. Perhaps I will be able to reduce my symptoms through this noninvasive technique.

I now live in a very small town in a remote area. We have basic medical care here, but we lack most specialist care. I felt discouraged, thinking that I've made this decision, and now won't be able to find a practitioner. To my surprise, there are many not far away! Not in our town or region, but in the closest urban centre (well, urban-ish). That's about three hours away, but that'd doable.

(Funny how that now seems like no big deal! It helps that it's a beautiful drive through the woods, with mountain views -- not three hours on the 401 or I-95.)

Right now we are all on COVID-19 lock-down, but when the pandemic is over, I am going to contact some EMDR practitioners.

Treatment and Health Update

I haven't changed any of my medications or supplements, with two small exceptions.

After we relocated, the Fibroplex (which I wrote about here) became prohibitively expensive. I was able to find the ingredients separately, and have been taking those. This is a good sign -- it means more people are aware of the positive effects of malic acid. You can find malic acid as "magnesium malate". I'm taking that plus a high-potency B-complex vitamin, and it seems to have the same effect.

I also stopped taking Exhilarin, for the same reason -- Metagenics products became too expensive after we relocated.

We've lived in our new location more than a year, and my quest for better fitness has been two steps forward, one step back, as I battle a series of mysterious injuries to my wobbly joints.

On the positive side, I am feeling much better from simply doing less.

I will report back about the effect, if any, of EMDR on my symptoms. I'll write about my experiences with EMDR in more depth on my main blog, if you are interested. Those posts will be tagged with "ptsd".

update: 03 february 2019

It's been a very long time since I updated this blog, but I haven't abandoned it. In the three years since I posted about PTSD and EMDR, in relation to my fibromyalgia, several things have changed.

After four years as a local union president, I decided not to stand for election again. My labour activism was one of the best experiences of my life, and I will always remember it with pride and joy -- but I'm very glad that chapter is over.

I didn't appreciate the toll it was taking on me, both physically and mentally, until I left and had some distance. I now realize that I was overdoing, and it was exacerbating my fibro symptoms all the time.

I've come to a place of acceptance of my PTSD as a permanent part of my life. It seems strange that it took me nearly 30 years to do that! This acceptance has led me to stop seeking any treatments or processes that might aleviate the symptoms.

To those ends, I never tried EMDR. I read an excellent book, The Evil Hours: A Biography of Post-Traumatic Stress Disorder (my review is here), which really turned me off from the idea. I probably placed too much importance on the author's analysis -- but the book gave me permission, so to speak, to leave off EMDR from my to-do list. I've done all the exploration I want to do. Choosing to end that thread is a good feeling: exercising control.

Treatment Update

Here's what I've done for treatment since my last update.

- I haven't changed or reduced any of my medications or supplements. I've tried a few times, as the nutraceuticals are expensive, and the prescription meds have side effects. After a few days, there's an increase in pain and other symptoms, and my experiment ends.

- I went back to Exhilarin. It helps me think. I still struggle with concentration, especially when there's background noise or competing conversations, and at night. But the Exhilarin helps, so I stick with it.

General Health

We've experienced another Big Life Change (what else is new?) and my focus for this year, and probably beyond, is to increase my fitness level. (I wrote about it here.) This will be very gradual and I don't know how far it will go, but it will be interesting to see what impact it has on my fibro, if any.

update: 02 january 2016: ptsd and chronic pain

My life has changed a lot since I first created this blog in 2011. I'm now working full-time, plus I'm now president of our library workers' union, a responsbility that is the equivalent of another part-time job. So I'm doing more than I have at any time since my initial diagnosis and recovery.

To stay on track and avoid debilitating crashes and setbacks, I must be very disciplined. I turn down most invitations, and I spend most free time on the couch. I joke that my life is three things: work, union, and couch. But it's mostly not a joke.

Despite this, my energy level has been surprisingly good. My pain and other symptoms have not lessened significantly.

Treatment Update

Here's what I've done for treatment since my last update.

- I continue to take 50 mgs of nortriptylene at night, and have been sleeping fairly well. I have horrible dry-mouth, and as my work involves a lot of speaking, I have cough drops (no sugar added Ricola) with me all the time. I find the dry mouth very annoying, but insomnia or non-restful sleeping is not an option.

- I stopped taking Exhilarin and GingkoRose, because I felt we couldn't afford all the supplements. Looking back at my old posts, I think I need to re-start at least the Exhilarin. My "fibro brain" has returned with a vengeance.

- I'm also taking Omega 3s from wild salmon fish oil, and CoQ10. These are for general cardiovascular health, but there is supposed to be a mental benefit, too.

- The acupuncture didn't reduce my pain, but it did reduce my temperature! I am still warmer than most people (have been all my life), but I'm no longer flushed and burning up all the time. Some time after completing the course of acupuncture, I wanted to have more, but the doctor had moved out of the area. I tried another doctor, and had the complete opposite results. Not only did the needles hurt, they produced no positive results, and I suffered nerve damage. At the site of one needle insertion on my hand, I have nearly constant itching. My conclusion is that acupuncture can have great results, but it's down to the individual practitioner. And how do you find someone whose technique will work for you?

Trying something completely different

Now for the big news: a therapist recommended that I try something called Eye Movement Desensitization and Reprocessing, known as EMDR. This has been shown to be useful in reducing PTSD symptoms... and she says there is a link between chronic pain conditions such as fibromyalgia and past trauma.

I came upon this through a roundabout way. I was having an increase in my anxiety, and asked my doctor for a refill of the clonazepam that I take occasionally. She felt I was taking them too often, and encouraged me to go on a daily anti-anxiety med (an SSRI) rather than an as-needed med.

I was very resistant to this at first, which is strange, since I have witnessed the life-saving (and relationship-saving) effects of anti-depressants and anti-anxiety medications, and I have encouraged many friends to try them. But for whatever reason, I was reluctant to make this change for myself.

But clonezapam and other as-needed sleep/pain/anxiety meds are habit forming. Your body builds up a tolerance very quickly, and also "forgets" how to not have anxiety without the meds. In other words, they're addictive, and you soon need them to feel normal. With my highly addictive personality, and a family history of prescription substance abuse, I'm a good candidate for trouble.

Eventually I gave in and tried an SSRI... and my anxiety has disappeared. I just feel steady, and normal, and in-the-moment. Only after that change did I realize that I had been in a constant state of anxiety. That feeling had become the new normal, and I was only noticing the anxiety when it spiked. So: great results. (The only side effect is yet more dry-mouth.)

My doctor also suggested going for some short-term therapy, possibly cognitive-behaviour therapy, and she suggested that I use my Employee Assistance Plan (EAP) to do. This is the first time I've ever had EAP. It's supposed to be a great benefit - it's confidential, and it's free - so I thought, why not try it. The intake person was great, and found a therapist 5 minutes from my home.

I arrived at the therapist's office all set to try some superficial, intellectual exercise. I thought, certainly I don't need anything in-depth. I've done all that already. I'm all "done". Everything is in its place. But hey, if everything is right in my world, why do I still wake up with night terrors?

These therapy sessions turned out to be anything but superficial and intellectual. In fact, they were kind of grueling. Poking the hornet's nest of PTSD is not easy. It seems absolutely ridiculous - it seems impossible - that one incident, no matter how horrible, could still be affecting me more than 30 years later! But that's wishful thinking. Trauma re-wires your brain. The extreme surge of adrenaline and other neurotransmitters that flood your system from trauma permanently alter your brain chemistry. And comparing the trauma I lived through to other people's trauma is a dead end. Dr. Dennis Charney, a psychiatrist at Yale and director of clinical neuroscience at the National Center for Post-Traumatic Stress Disorder says:

It does not matter if it was the incessant terror of combat, torture or repeated abuse in childhood, or a one-time experience, like being trapped in a hurricane or almost dying in an auto accident. All uncontrollable stress can have the same biological impact.

Now add this fact to the mix: fibromyalgia and other chronic-pain disorders are strongly associated with trauma and with PTSD. I suppose I was vaguely aware of this, but this therapist emphasized it more than I ever had.

And that's what led me to investigate EMDR. The therapist said it's been documented to reduce PTSD and chronic pain symptoms in many people. I really don't want to work on past trauma - ever again - but if there's a chance of reducing pain, I will try it.

I've decided to wait a while, as this is the wrong time for me to begin something that might be disruptive or frightening. But I am planning on looking into it, and I will probably try it.