Fibromyalgia: Expectations vs reality
Back in the day. Like 20 years back in the day I had some expectations about what fibromyalgia is and then I learned the reality of what fibromyalgia is. We all have expectations of what it will be and mean for our lives in the beginning. Even before we are diagnosed since that can take 5 to 10 years. And sometimes we believe it will be horrible forever. And others, like me, believed it wouldn’t have the impact it had.
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Expectation 1
The pain and fatigue were manageable if I paced.
Reality
Pacing is damn near impossible when you are working so you end up in the Boom and Bust cycle. Overdo it, suffer for days, recover a bit, and repeat over and over and over. And pain flares sometimes for no reason. And the fatigue can be worse than the pain sometimes. Also, fibromyalgia changes over time. I felt like I had decent control over it back then because I was a student, I paced, I napped and I didn’t work. But more obligations mean, well, more pain and fatigue. Also less sleep, and waking early, which makes this all a real mess of crapola.
Expectation 2
Okay, fibromyalgia is going to affect my body and I will have limitations. Figured those limitations out the hard way. But it will never affect my mind or capacity to work, like a desk job.
Reality
So yeah a desk job does help since I tried others in University and it was a level of hell I wouldn’t willing to undertake again. You still need to change positions all the time and take walks every bit or so… or pain. But fibromyalgia has fibrofog and the research on that cognitive dysfunction suggests there are several areas impacted. Our concentration. Our working memory. Our short-term memory. Memory retrieval of things we Know. Trouble speaking words. Typos. So yeah, it affects you all right. All the time. And worse in the workplace when you are trying to concentrate and a piece of a policy literally poofed out of your brain. I had several binders for things to remind me of. So I had easy access to things I commonly forgot. And conversation issues were a constant embarrassment.
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Expectation 3
I thought this was the whole show. The pain, fatigue, and cognitive issues.
Reality
Sorry, but fibromyalgia has a number of strange to bizarre symptoms due to its effects on the central nervous system. IBS showed up. Rashes. Paresthesia. Allodynia burning skin pain. And it seems when one thing settled down something else flares up. It leads to constant doctor appointments about strange things that crop up and stick around for a bit that just end up being fibromyalgia. And it is disconcerting sometimes because you feel something else is going on.
Expectation 4
Okay, so I have fibromyalgia with all its symptoms. I need to adapt and cope. But that is all. It is just going to be this.
Reality
Oop here comes a comorbid. And then another. And another. And they will make coping far, far, far so bloody far harder to cope with.
- hypothyroidism
- chronic migraine
- asthma
- Nerve damage
- depression
And I have to tell you when you add that all up it was a lot harder to cope with than I initially anticipated. The depression alone took a huge toll on my capacity to cope. When that was treated I cope better. We learn all sorts of strategies that help in the end. Use what works, discard what doesn’t.
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