That’s what I texted Kyle and my mom and my best friends after I got out of the rheumatologist. Just one word because it was the diagnosis I received, and it didn’t need a whole lot more explanation in that moment. I was in pain; I have been in pain for years. And there was the answer to my wondering why: fibromyalgia.
The frustrating thing about getting a diagnosis of fibromyalgia is that most of the medical community looks at it with a loud shrug when it comes to what it is, what causes it, how to fix it. On the one hand, certain therapies help: gentle movement, gentle activity, tai chi, yoga, and certain medications that I was on already like gabapentin and venlafaxine all tend to lessen symptoms or, at the very least, trick your brain into saying “well this isn’t so bad.”
(the irony of the movement is that if you do too much of that, you end up exhausting yourself, so it has to be balanced: walk, do yoga, swim, but be gentle with yourself, or you’re going to reach the end of your routine and be a noodle)
But on the other hand, it’s a disorder that’s not understood very well, and unlike a lot of autoimmune disorders, it’s not one where your usual regimen of NSAIDs or even opioids will do much good, because the problem isn’t inflammation so much as it’s your brain getting confused about the signals it’s receiving from every nerve in your body. It’s sort of like this:
What research there is shows that fibromyalgia tends to develop after a physical or mental trauma, which tracks because I’ve had this pain since shortly after my Awful Back Incident in 2020. It exhausts you on so many levels because you’re constantly fighting pain that doesn’t even make sense; it’s not like inflammatory pain or pain from an injury. It’s just pain, every nerve in your body responding to every conceivable stimulus it receives by sending pain signals.
And nerves are one of those fun areas of the body that most doctors just shrug loudly about and say “idk, it’s magic I guess?” (obviously not literally, but you know what I mean) It’s roughly a step up from “you have ghosts in your blood and you should do cocaine about it” like we had in ye olden days of medicine, but not a huge step. And there are experimental and off-label treatments all over the place–LDN is one that I’ve heard a lot of good about and plenty of people happily extol the virtues of marijuana, particularly higher CBD strains–but it’s not a super sexy and easily understood disorder so it’s not something that people are champing at the bit to fix, at least not right now, at least not in huge numbers.
I’ve had a couple of good cries about it. Maybe that’s emotionally fucky of me, but I don’t really care. I know it’s not the end of the world, and I know that functionally, very little about my life has changed–I’m not even on any higher doses of medication or anything–but I think knowing that not only is my diagnosis one that’s lifelong (because as of right now, there is no cure for fibromyalgia) but also it’s one that doesn’t have any therapies that work quickly. And that shouldn’t be frustrating, but it is. Before I went to the rheumatologist, I was doing my own research (I can see you, doctors, tsk tsking me over there) and playing “what if it’s this” with a bunch of autoimmune disorders. So many people talked about going to the rheumatologist, having said doctor take one look at them and say “you have [x]” and prescribe them some shot or drug that made them feel better within 24 hours. Obviously not a cure, but a reduction in symptoms.
But fibromyalgia isn’t like that. My rheumatologist told me the main things she’d suggest prescribing were medications I was already taking. That exercise and movement would help me but both would take time to really work their way into my brain. That fibromyalgia is very real–that the symptoms aren’t psychosomatic or anything–but that it’s heavily misunderstood.
I don’t know. I feel like that’s something fair to cry about. Sorry, you’ve got an incurable disorder and the best we can suggest is that if you exercise you will eventually start to feel better, and maybe some drugs on the market could be useful but we’re your physicians and we’re very skittish about prescribing things for off label usage, so have fun.
It’s required adjustments in thought, for better or for worse. I’ve already been looking at my life differently because, hey, autism; but then you add this disorder to the list and it’s a whole new level of different ability, as the Autism Mommy T-shirts say. Right now, that looks like taking things a lot more slowly than I have been. I’d been looking at life kind of in a mindset of “I’m just going to get back into things, I’m going to push myself a little bit more each day” and yeah, that’s technically what you should do with fibromyalgia, but if you’re also dealing with mental stress while pushing yourself physically, it produces interesting results.
Specifically, this past weekend. Halloween, what have you. I feel like once upon a time, my Halloween adventures with the kids wouldn’t have caused problems for me: I stopped by a few stores Saturday morning and then took the kids to the town trunk or treat in the evening, which was a lot of standing in line, waiting, etc. Then on Sunday, we took the kids to Barnes & Noble and Target. Again, normal things, but both days just wore me out completely. Maybe it’s the stress of this month (we’re going on vacation in a little while, so I’m still piecing that together), but my brain and body are like… not fans of doing stuff.
I talked it over with Kyle, and we decided that it’s a good idea for me to have a disability placard for our cars. It’s a weird thing because fibromyalgia is a decidedly invisible disability, but I’m discovering more and more that any level of overdoing it, including walking too far between the car and the store or between the car and the hotel and so on and so forth. And on one hand, I feel like I need to justify it over and over again, but on the other hand, like… no? ??? It’s justifiable from my doctor’s standpoint and from the standpoint of the state, so there’s really not anything else I need to do.
Besides take it easy.
And get to a dispensary sometime.
And figure out an exercise routine.
But all of that when vacation is over. For now, I’m more focused on getting cars inspected, oil changed, tires checked; getting road snacks and creating packing lists; pulling together a driving playlist and figuring out where we’re going to have Thanksgiving dinner.
And doing it all while being like, ah, I can’t do as much as I used to.
So that’s neat.