Is fibromyalgia a diagnosis of / by exclusion?

JayCS

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The opinion that fibromyalgia is still a diagnosis of or by exclusion comes up fairly often,
altho it was like the tender points test debunked by the ACR criteria in 2010.
It is a diagnosis of exclusion, inclusion and checking the amount of pain and 6 other symptoms.

It's true that many doctors, probably the majority are diagnosing with outdated criteria.
Allowing for that, more correct may be "should no longer be a diagnosis of exclusion".
According to the 2010/11 and 2016 ACR criteria", the best determined and 'proven' ones so far (or the 'least bad').
They are the ones that debunked the tender points test.
And if it were right to say it is a diagnosis of exclusion then it would also be right to say diagnosis is based on the tender points test, just because many doctors still use it (like mine did). Which it isn't.

So an article called "Fibromyalgia: A Diagnosis of Exclusion No Longer" could already appear 2013, but continues to be confirmed, like in the review "Diagnostic Criteria for Fibromyalgia: Critical Review and Future Perspectives" from 2020, both based on the ACR criteria by Wolfe et al.
The mayoclinic's 2022 take on it in "Fibromyalgia: A diagnosis of exclusion?" puts things simply, and - rightly - says exclusion is part of the diagnostic process. (Unfortunately also seemingly referring to the tender points test, that bit again outdated.)

So It's true that other conditions need sorted - excluded and included. This does not have to be done first, though, as co-morbidities are (should be) accepted. So it's possible to diagnose fibro, and still diagnose something else afterwards, like the criteria say.

If we keep up the outdated phrase of "diagnosis of exclusion", we are overemphasising the exclusion, denying similar co-morbidities and increasing the difficulties of help. Saying it implies that exclusion is the main or even only part of the diagnosis process - like only if you have nothing else that can explain such widespread pain, then it's fibro, but if you did, it's not. It is definitely necessary to exclude or examine in case it's also something else - that's also part of the ACR criteria. And it would be right to call it a diagnostic process of examination.

Examples:
1: In my case much more than 20 diagnoses were excluded, like ankylosing spondylitis, MS and Sjögren's. If I had one of these, but still had fibro symptoms, according to the ACR I'd still have fibro, and I still think that is right.

2: Now I know I've probably always had MCAS and as part of that I've got the Post Vac Syndrome form of Long Covid. MCAS experts say "fibro" symptoms could be explained as part of MCAS. If fibro were a diagnosis of exclusion, people could say I don't have fibro, cos I have MCAS.

3. In hospital cos of my severe vertigo attack in August they spent a week excluding many things. Goes without saying that every diagnostic process includes exclusion, so makes no sense to use it unless we were saying it is only that.


So it is much more accurate to say it isn't a diagnosis of exclusion than that it is. I don't think it should ever be used.
And best is like the ACR criteria to say: all possible other conditions should be excluded, but the diagnosis is mainly based on a clear, definite set of symptoms and their severity. We are devaluing our condition if we don't.
 
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