Unfortunately not only is Fibromyalgia comorbid with other conditions, but its symptoms can also mask other issues. There’s no definitive test as it doesn’t show up in blood work so it’s diagnosed by clinical evaluation.
When I was diagnosed with Fibromyalgia, I had been experiencing widespread pain (one of the symptoms/criteria) for years, but due to being a teenager, was told it was “growing pains”. It wasn’t. Other criteria they use are trigger points that, if pressed, cause intense pain.
I ‘scored’ on 14 out of 16 trigger points. The other common symptom is “fibro fog” where concentration is poor and cognition can be affected (especially during a flare–up).
I was relieved to finally have a diagnosis. I also have hypermobility which also causes pain, but a different kind of pain: fibro is more nerve pain and hypermobility is more joint pain (and frequent dislocations).
At the end of the day, you can see why people with certain conditions (such as Ehlers Danlos) refer to themselves as Zebras. Doctors are taught “when you hear hoofbeats, think horses, not zebras”. Aka, don’t go diagnosing ‘rare‘ conditions when it could be a simple thing. Except instead we get fobbed off, being told it’s just back pain and everyone gets that. Oh, you’re only young you’re probably still growing.
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Yes, some doctors misdiagnose it. And yes that can have a negative effect on people who do have it. But two people with the same condition can have wildly different experiences. I don’t have to use any mobility aids (i.e. walking stick or wheelchair) but many people with fibro do.
That doesn’t make me not have fibromyalgia anymore or make me better than them. Because I might suffer more with the other fibro symptoms. Plus I have another condition which, when I have flare-ups of both conditions at the same time, can make it impossible to get out of bed.
I’m 18 years old, I don’t want to have these conditions but I will live with them. I had to fight for 7 years to get a diagnosis. I can’t remember what it’s like to wake up and not be in some sort of pain. That doesn’t mean I’ll sit back complacent. It means I’ll go to physio and look after myself because I’ve got (hopefully) another 70-odd year with these conditions at least.
Just think, if someone’s been fighting for doctors to recognize something is actually wrong with them for, in most cases, a decade (average time from onset of symptoms to diagnosis) then maybe once they have an answer that fits, they don’t want to fight anymore.
Besides, it’s not even doctors that diagnose fibro most of the time, it’s rheumatologists (in the UK anyway) who you have to be referred to, which can take up to 6 months in some cases.
Doctors: It’s a difficult condition to diagnose but saying doctors misdiagnose it can be harmful to people who genuinely have it and struggle with it every single day. Sure, it could be an indicator of something else but that’s down to the doctor’s not being informed. Or old school doctor’s thinking they know best.
And lack of knowledge on treatment pathways…
I know people with Fibromyalgia who are on cocktails of painkillers so strong that they are dependent (not necessarily addicted although that happens too) and cannot come off them without massive withdrawal symptoms – because doctors just keep upping the dosage instead of trying something different.
Misdiagnosis is more often the doctor’s fault than anything else because it can only be diagnosed clinically rather than a definitive blood test.
That being said, blame culture in medicine is detrimental to all involved and should be avoided where possible.
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