I may or may not have fibromyalgia. Or maybe I should say that I have fibromyalgia if I accept the diagnosis? That will maybe make more sense – well, maybe make some sense – after I explain, hopefully? Honestly, if it ends up making sense to you, readers, please let me know. I’m still confused!
My gastroenterologist has scheduled me for further testing in about a month. Not to “toot” my own horn or anything, but I am enough of a badass that my gastroenterologist still seems to be betting there’s something more “down there.” However, it takes more than a blood test to know, and it will be a bit before I learn anything conclusive. My rheumatologist, in the meantime, claims that I have fibromyalgia. (I don’t know if he’ll change his mind and decide to go with something else if my gastroenterologist diagnoses it, or if he’ll claim I have both, or what?)
I say claims because I’m not really sure whether my rheumatologist actually believes that I have fibromyalgia, or even believes in fibromyalgia, or whether he was just using that as a default, “I don’t see obvious signs of rheumatoid arthritis or lupus. Let’s just go with fibro” diagnosis. He also didn’t seem particularly interested in comparing notes with my other doctors, with whom I have longer histories. This doctor was my first rheumatologist, and I was not impressed with the guy. He barely listened, made snap judgments, and I don’t think he even bothered to actually examine anything. He felt my hands, and he indicated that he felt no obvious joint damage. (This is not necessarily a surprise to me, as my new symptoms haven’t been going on a long time? I’d hope I wouldn’t yet show extensive joint damage!?) He also jabbed me with his fingernails in a few places (not 18 places, though. I counted!) It did hurt, but did I mention he jabbed with his fingernails? Of course it hurt! He did order blood tests, which will be back in a week or so, I assume. Other than that, he just said “fibro” and was done with it. I tried to ask some questions. I have a friend with fibro, and my understanding of it is that it really is a very shooting, burning pain, all over. I have fatigue and aching joints, but nothing I would necessarily characterize as all over (it seems mostly in my joints) or burning/shooting (it seems more just an ache with swelling?) I have IBS and migraines, but I’ve had those all my life. Those aren’t new symptoms. I feel insulted and confused by the whole experience. I’m not sure how seriously the rheumatologist took the diagnosis, and I have to figure out what to do if nothing else ends up showing up on blood tests. Do I say I have fibro? How do I actually know if I do?
I feel insulted by the whole experience. I feel like fibromyalgia patients in general – whether or not I end up being one of them – should be insulted by that experience. I’m not sure how seriously the rheumatologist takes fibro, but I, at least, take it seriously. I take it seriously enough that I feel a doctor shouldn’t just drop an F-bomb like that on a patient then send her off. Fibromyalgia is a serious nervous system disorder. Does that rheumatologist even get that, or is he one of those doctors who doesn’t really even believe in something his specialty is supposed to treat?
I’m torn. On the one hand, I don’t feel like I necessarily am ready to say that the fibro diagnosis is the right one. I’d like to see the blood work, follow up with other doctors, and generally do more research. I’d like to be sure I’m treating the right chronic illness, if I’m going to be treating one. On the one hand, I’m angry and unwilling to yet claim I have fibro just because of the way it was haphazardly diagnosed.
On the other hand, I think fibromyalgia might be the scariest of all possible diagnoses to me. I can’t stop thinking about what it means if I do have it. Have I mentioned that it is seriously upsetting to me to not be believed? Fibromyalgia is potentially the worst possible trigger I can think of as someone who desperately fears not being accorded the dignity of her own mind. I already have ADHD, and I’m sure my readers have seen enough Internet memes to know just how many people already don’t believe ADHD is real. Adding fibro into the mix? It feels like my personal version of Hell: desperately trying to treat and manage something for the rest of my life that might cost me everything I care about, while the rest of the world calls me crazy for saying anything is wrong at all.
I believe fibro is real, and I know just enough about it (and will probably research far more than is good for me) to already be having fears of not being able to continue working in the future. I am already having fears of my boss laughing at me for using a “made up” disease as a justification. I did list all of my other diagnoses on my medical history when I saw the rheumatologist. (Though, I probably won’t anymore after this experience!) I am also scared that I got a “psychosomatic” (what I envision my rheumatologist thinking, not my words, just to be clear!) diagnosis because my rheumatologist thinks I’m “crazy.” I’ve talked before about how frightening it is for me, knowing that prejudice against individuals with any kind of prior mental health history is quite real among medical health practitioners. My rheumatologist didn’t technically say it was “all in my head,” but I think he effectively did with how casually he handled that fibro diagnosis. Yeah, I’m scared…
I’ve tried to be kind to the medical establishment. I’ve tried to be proactive when I write about the medical establishment. I’ve tried to talk about how to fix problems, instead of just bitching about doctors’ apparent inability to show trauma sensitivity during visits, their general bias against patients with prior mental health diagnoses, and their general unwillingness to listen and take time (making it take about 4 years and 6 doctors on average) to get a correct chronic illness diagnosis, when I write. Tonight, I’m not willing to just let it go, or try to make it better “in the future.” I want that rheumatologist to know now that he was out of line. It was totally inappropriate how I was “given” that fibro diagnosis. I don’t know whether I truly have fibro, but I do know that the next girl who sees that rheumatologist deserves better, especially if she has it. I’m furiously googling how to make a complaint against that doctor. Any advice, readers? I can’t quiet my own fears about the diagnosis right now, but maybe I can at least try to take some concrete action to help someone else?
Also, anyone actually know how to determine if I have fibro? Or what to do next if I do?