Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember.
And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.
It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself.
Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”
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Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…
Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.
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Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”
For me, fibromyalgia is an undiagnosis*.
At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.
When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.
On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.
*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.
Emily, I know exactly how you feel, having gone through much of what you have in terms of searching for answers. I hope you get those answers soon. Just wondering if you’ve been tested for Lyme disease which I’ve read mimics MS? I’m new to your blog and have read many of your past entries, but I’m human and could not possibly read them all. 🙂 Apologies if I’m suggesting something you may have already thought of/been tested for. In any case, it seems to me, from what you’re describing, that it has to be something more than fibromyalgia. Hopefully everything gets sorted soon with the doctors to where you can see the neurologist, even if only to rule out MS.
Thanks for replying. I honestly don’t know if I’ve been tested for Lyme. My doctors did a bunch of different things to rule out conditions, and I don’t know if that was one of them now or not. My uncle recently had it, and after he got treatment he said he felt so much better. I’m open to looking into anything and everything in the hopes of finding some relief!