- Apr 12, 2022
- DX FIBRO
Hopefully one day there will be a simple test for diagnosis. But even more so, hopefully one day they'll find a cure.
*Sigh, yeah!*Hopefully one day there will be a simple test for diagnosis. But even more so, hopefully one day they'll find a cure.
I guess I am not following this, nor does it make any sense to me. Why would anyone say that a person automatically has fibromyalgia in addition to the other disease, if in fact the other disease is causing the pain? If a person has cancer, for instance, and the cancer is causing widespread pain, and the person has successful treatment and the pain thereby goes away and they feel healthy and pain free after that, how can it be said that that person has or has had fibromyalgia? They didn't - they had cancer. Which can be cured. As opposed to fibromyalgia, for which there is as yet no known cure. And what would be the advantage of simply stating that a person has fibromyalgia if in fact what they have or had is cancer? What purpose would that serve, except to confuse the diagnosis of fibromyalgia?Not quite: As I said, they are saying if other things are causing this, you don't only have FM, but you also have FM.
So still of course further testing and thus not at all a dangerous mistake.
Anyone seeing it differently is arguing with the world leading experts in fibromyalgia, the American College of Rheumatology, since 2016 (the ones who introduced tender points in 1990 and discarded them in 2010), as well as the American Pain Society 2019.
They are also contradicting the online test of our fibromyalgiaforums website.
Germany is behind by in 2017 saying that the 1990 & 2010 criteria may be used for diagnosis, but they are re-working as we speak.
I think it is good to give FM a fixed place by no longer playing it down as a vaguer "diagnosis of exclusion", so defining it "negatively," but instead defining it "positively" with a fixed set of criteria, and at the same time making sure everyone realizes we can have many additional conditions, even contributing and these need to be tested for.
Come to think of it, this development even supports the need to "get tested!" even more, since a fibromyalgia diagnosis now definitely doesn't exclude anything else, whilst before patients/docs could say: "With fibro, I don't need to look further". Now they do!
Again this is still the same misunderstanding: if we're not tested first, then we are not (being) based on the new guidelines, which say we have to be tested. Any doc who cuts off at 3/W/S and not doing #4 = testing for further conditions is being negligent. What they are saying is that it is not true that you either have fibro or something else, you can and often have several conditions, so it is wrong to base a diagnosis on an exclusion, possibly quickly & negligent. From the tons I've read there are many docs who put symptoms down to fibro without testing much, and this is wrong due to the old and the new criteria. Andrew Gross in his still mainly good long talk from 2012 (recorded 2011) "Fibromyalgia: It's Real, It's Manageable, What You Can Do" posits the reasons for this: keeping time, money and energy of docs, providers and patients balanced / in check by giving the diagnosis quicker. He says that probably not enough people are being diagnosed.My worry is that if we're not testing first, and are now just basing it on the pain index for at least a 3 month period, how many people may have been incorrectly diagnosed with fibro? As I say, I've had lots of testing, but it would be interesting to know how others are/ have received their diagnosis? Did you go through all the tests first or is your diagnosis based on the new guidelines of 3 months/ WPI/SSI?
Yes, I definitely agree @JayCS. However, I think it's sad that we may go from one extreme to the other. From the negligent as you mention, to my case where I rightly had all the tests but were left in limbo for over 28 yrs. And I still come across many sufferes of fibro that have taken far too long for a diagnosis. Have these guidlines changed anything for the good I wonder?? I believe we need the tests, we need the guidlines, but more than anything we need to be heard.Any doc who cuts off at 3/W/S and not doing #4 = testing for further conditions is being negligent.
Researchers are now trying to sort thru the confusingly many and differing criteria. So there was a comparison 2020 (Häuser, Wolfe) between the 2016 ACR modified criteria and the 2019 AAPT (by the APS) that showed that 73% more would have been diagnosed with FM by the latter, which "select individuals with less symptom severity and fewer pain sites".And I still come across many sufferers of fibro that have taken far too long for a diagnosis. Have these guidelines changed anything for the good I wonder??
Yes, "The revised [= 2016] criteria are reliable and valid when used to diagnose patients with FM, and are better than the previous criteria." says the following study: Performance of the revised 2016 fibromyalgia diagnostic criteria in Korean patients with fibromyalgia, 2019 (12$ paywall).Have these guidelines changed anything for the good I wonder??
Hehe, so let's argue together so we'll understand better. That's my aim. Also of course these aren't even my opinions (?yet).JayCS, I am not arguing with you, only saying that if that is what some scientists or medical researchers are saying now, I disagree with them.
Misunderstanding: With "more than 3 months" they mean past, plus never-ending, i.e. chronic, as opposed to all these examples.cancer is causing widespread pain ... Which can be cured. As opposed to fibromyalgia, .. no known cure. .... serious physical trauma ...
That's exactly it: They are only left out because they complicate matters unnecessarily. They are mentioned and help, but are not fundamental for diagnosing, and overcomplicated, like you say.leaves out all of the other attendant symptoms with which we are all so familiar. Fibro is not, as we all know, just pain. .....
I also feel that it would be pretty tricky and difficult to define fibromyalgia with a fixed set of positive criteria, considering that that list would have to be 50 or more symptoms long, which in any individual can change and mutate with time, and no one person with fibro will present with all of them all the time.
Dead right, and many of them know that too. But I consider them worth listening to closely and arguing with, esp. because these are a pretty big think tank - but also not unchallenged by each other, as we can see from the different sets of criteria.care about arguing with "leading experts" in any field. ... touted... today ... debunked tomorrow ... nature of science and research.
I have never thought that it is a discrete disorder, myself. Always, I have strongly suspected that it is only a temporary umbrella term, and with further research and understanding the term fibromyalgia will be broken down into different conditions. Had not thought of it as being put on a scale like autism, with a few different names for the different parts of that scale, but that also seems like a good possibility.The future of fibromyalgia as a discrete disorder remains uncertain
Yep, I'd also always agreed that I feel it'll turn out to be subgroups with varying characteristics.discrete disorder ... different conditions. ... few different names for the different parts of that scale
Just realized I think this distinction would be less confusing if they would say on the questionnaires which is which.The physician-based criteria are valid for individual patient diagnosis. The self-report version of the criteria is not valid for clinical diagnosis in individual patients but is valid for research studies.
That would be tricky to do because people have such wildly different concepts of how bad a symptom is, especially when it comes to pain.But this "fibromyalgianess" (aside from that) apparently refers to a quantity / degree of fibromyalgia. Any ideas on that?
Interestingly, they actually don't think nec./sensible to ask for pain severity, just how widespread it is (to exclude all regional pain conditions).For instance, that one-to-ten pain scale.
Here the problem is that almost all of our symptoms are self-reported and partial (the reason for the psycho prejudice).Since degree can only be measured by the person reporting it, it is not even remotely impartial and couldn't be used as an accurate diagnostic indicator.