"Tender points" and pursuing fibromyalgia diagnosis
March 23, 2022 12:09 AM Subscribe
Idle-medical-curiosity-filter: I realize that "tender points" aren't used as much anymore to diagnose fibromyalgia, but I'm curious if I have them [more description inside]. Also, if I do have them, but my only other symptom is longstanding fatigue, is there a point to pursuing a diagnosis? Are there any treatable fibromyalgia-related symptoms that I might not have noticed yet? Are there any treatments specific for fibromyalgia-related fatigue that *aren't* stimulants? (I'm already taking stimulants for ADD, and it doesn't help the fatigue.)
The tender points: Basically, I have penny/quarter-sized spots, distributed symmetrically/bilaterally all over my body, that are painful when pressed. They're not painful or achey unless pressed, and they don't cause referred pain, and they're not lumps or knots. I have way more than just the 18 classic tender point locations that can indicate fibromyalgia, but again, they're bilateral, and the description sounds the same. Are these tender points? I am forced to assume so, because it's an oddly specific symptom, and it doesn't seem to match any other conditions. If I'm missing any other conditions it could be, I'm all ears!
The question, again: As far as I can tell, tender points are my main symptom, combined with fatigue (which isn't helped by stimulants, and which I've mostly given up on fixing). Given these symptoms, is there a point in pursuing a fibromyalgia diagnosis? Will it have benefits that I'm not considering, as far as treatment options, or anything else I haven't thought of? It seems like fibromyalgia is currently one of these mystery diagnoses of exclusion, like ME/CFS, so I'm wondering if there are any practical reasons to pursue a diagnosis, if these tender points and fatigue are the only symptoms I currently notice.
The tender points: Basically, I have penny/quarter-sized spots, distributed symmetrically/bilaterally all over my body, that are painful when pressed. They're not painful or achey unless pressed, and they don't cause referred pain, and they're not lumps or knots. I have way more than just the 18 classic tender point locations that can indicate fibromyalgia, but again, they're bilateral, and the description sounds the same. Are these tender points? I am forced to assume so, because it's an oddly specific symptom, and it doesn't seem to match any other conditions. If I'm missing any other conditions it could be, I'm all ears!
The question, again: As far as I can tell, tender points are my main symptom, combined with fatigue (which isn't helped by stimulants, and which I've mostly given up on fixing). Given these symptoms, is there a point in pursuing a fibromyalgia diagnosis? Will it have benefits that I'm not considering, as far as treatment options, or anything else I haven't thought of? It seems like fibromyalgia is currently one of these mystery diagnoses of exclusion, like ME/CFS, so I'm wondering if there are any practical reasons to pursue a diagnosis, if these tender points and fatigue are the only symptoms I currently notice.
Fibromyalgia is often comorbid with other autoimmune diseases, of which a common primary symptom is fatigue. So getting your fibro diagnosed/treated might well identify and treat an AI disease, and your fatigue.
I was diagnosed AI last summer, started treatment, and I am just stunned at how much better I feel now - better than in several years. I was a lot more tired than I was ever going to admit or seek treatment for.
posted by Dashy at 9:24 AM on March 23, 2022 [2 favorites]
I was diagnosed AI last summer, started treatment, and I am just stunned at how much better I feel now - better than in several years. I was a lot more tired than I was ever going to admit or seek treatment for.
posted by Dashy at 9:24 AM on March 23, 2022 [2 favorites]
I have some tender points, but I also have autoimmune stuff - if you haven't already had the usual battery of tests for fatigue stuff (thyroid, vitamin D, ferritin, B-12, etc. among them) that would probably be part of pursuing
My fatigue has slowly improved over the last decade, but the big jumps have been due to ongoing high dose Vitamin D supplementation, sometimes iron supplements, and a CPAP machine (my apnea was only slightly into the treatable level, but the machine basically doubled how much I could walk/move/do stuff in a day before I crashed hard.)
posted by jenettsilver at 10:16 AM on March 23, 2022
My fatigue has slowly improved over the last decade, but the big jumps have been due to ongoing high dose Vitamin D supplementation, sometimes iron supplements, and a CPAP machine (my apnea was only slightly into the treatable level, but the machine basically doubled how much I could walk/move/do stuff in a day before I crashed hard.)
posted by jenettsilver at 10:16 AM on March 23, 2022
I was diagnosed less than two years ago via the pressure point test alongside a lengthy interview by the doctor and a pretty heavy battery of blood tests to eliminate other possibilities. So I wouldn't write off the tender points.
As for whether or not you'll benefit from diagnosis, I think that really depends on the treatment you have available to you. It's pretty common for fibro patients to be fobbed off on their primary care physician, who doesn't know what to do with them. But if you can get seen at a good pain clinic, there are other treatments they can try. I'm currently waiting for an appointment at one of these clinics, so I don't have first-hand experience, but I have friends with other chronic pain conditions who have seen good results.
posted by lunasol at 4:47 PM on March 23, 2022 [1 favorite]
As for whether or not you'll benefit from diagnosis, I think that really depends on the treatment you have available to you. It's pretty common for fibro patients to be fobbed off on their primary care physician, who doesn't know what to do with them. But if you can get seen at a good pain clinic, there are other treatments they can try. I'm currently waiting for an appointment at one of these clinics, so I don't have first-hand experience, but I have friends with other chronic pain conditions who have seen good results.
posted by lunasol at 4:47 PM on March 23, 2022 [1 favorite]
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I also have some achy muscle pain and brain fog, in addition to being easily fatigued - though with the brain fog, I've got 3 different things now that can cause it (four, if you count lingering long-Covid symptoms), so it can be tough to tell what the cause is on any given day. (Though the crazy thing is, I can often tell - and I know it's right when the correctly chosen tactic works to alleviate it at least some.)
The fibro, though - I've been on a very low dose of an antidepressant, taken at night - I've migrated through three different ones, as my body has adapted to them and then they haven't worked as well - for about a dozen years. It seems to allow me to move into the right stages of sleep better, and the better a night's sleep I get, the better my symptoms are. It's not foolproof nor perfect, but it works pretty well, and it means I'm not taking a pain medication other than occasional ibuprofen.
Oddly, post-first-Covid incident, I got hit with much heavier sleepiness, that happens to be a different sort of tiredness than the fatigue from the Covid. We went through the oh-so-lovely sleep study, found a barely-diagnosable sleep hypopnea - and the cpap doesn't do much for it, though it (maybe) takes a slight edge off the fibro issues.
And so now we're looking at something like maybe-narcolepsy (and the discovery that something I thought was a normal thing that happened to everyone*** is actually cataplexy)... and the possibility that perhaps the venlafaxine I've been taking for years now has been masking minor narcoleptic symptoms that got worse with each round of Covid. Life is weird, huh?
*** The number of things I'm learning in my mid-freaking-40s that are NOT actually "normal things that happened to everyone/everyone does", especially those health-related, are getting a bit ridiculous at this point. Hello neglectful parents... heck, MY GRANDMOTHER HAD NARCOLEPSY, I described the experiences that were actually cataplexy to my mother (her daughter) quite a few times, plus other narcoleptic symptoms - and my mother never once suggested it to me or the family doctor. (I seriously wrote 2/3 of an essay that I did not remember doing and was SURPRISED when it was read in class. It started out fine, turned nonsensical, and I did not remember anything beyond the first paragraph. So embarrassing. Literally everyone I knew has heard that story - and I only realized it was totally 100% automatic behavior a couple months ago. It happened almost 30 years ago.)
Don't let it go. Check into it now, while it's not as bad - because it can always flare up worse, and if you touch base with your doctor NOW, you'll have a plan in place if it gets worse.
posted by stormyteal at 1:18 AM on March 23, 2022 [4 favorites]