No Fibromyalgia Diagnosis Yet

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fimi

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Hopefully one day there will be a simple test for diagnosis. But even more so, hopefully one day they'll find a cure.
 

JayCS

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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!*
Looking at today's criteria we could doubt that it's possible, but they are only descriptive of sensory symptoms.
However, looking at
a) all of today's hypotheses about causes (CSS, autoimmune, SFN, AV-shunt, neuroendocrine, mitochondria/ATP, genetics),
b) the many argued biomarkers (cytokines / chemokines / mast cells, salivary, muscle pressure, gut bacteria, glutamate, hormones / neurotransmitters, BCAAS, insulin resistance etc.),
c) the fact that there are maybe 20-30 co-morbidities that will always need to be excluded,
d) the complexity and variance amongst individuals,
I again doubt that the test behind the scenes will ever be "simple"
(like the sham FM/a "test" measuring only cytokines / chemokines pretending to be simple and clear, but already costing >1000$).

How the heck they'll ever be able to find a cure for this mess is beyond me and us, so I spose artificial intelligence / machine learning is the only way to make more sense. But even for that, the machines would need much more data to learn from.
That means much more money for much more research. Last year and the years before I found 600-800 studies each month including fibromyalgia on pubmed. A search now shows only "300" for the "4 months" in 2022. Also I read that funding has been decreased, I think it was in the US. Also I've heard fibro experts say that many fibro studies are worthless and unimportant. I wouldn't quite agree, we can learn a little bit in each - but it's not much fundamental stuff at all.
Our three world crises at the moment would seem more important, so we'll just have to carry on and do our best to get our symptoms in check and talk about how we do it with one another and with doctors.
 

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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!
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?

If the diagnostic criteria for fibromyalgia were to be only that the person has been in pain for three months or more, then that also leaves out all of the other attendant symptoms with which we are all so familiar. Fibro is not, as we all know, just pain.

Additionally, it would certainly be possible for a person who was in a car accident, was a burn victim, or had some other serious physical trauma, to be in widespread pain for more than three months. But that person doesn't have fibromyalgia.....they were burned, or their bones were broken, and so on. Once the burns heal, the bones knit again, the physical therapy is over, the pain may very well be gone permanently for those people.
Which is not the experience of people who have fibromyalgia.

If a person is going to define fibromyalgia only by being in pain for three months, it would be like defining COPD by a person having had breathing issues for three months, when a cold or pneumonia or covid19, TB or any one of many other things which are distinctly curable can cause breathing problems to last for three months. That is not truly a chronic condition - COPD is. Or, saying that a person who has had a great deal of stress or trauma, and not had enough sleep for weeks and is therefore tired all of the time, feels ill and and foggy-brained for three months while they recover from that, has Chronic Fatigue Syndrome (ME). Not the same thing at all.

Fibromyalgia is, so far as we know at this point, a chronic condition that has no known cure; although there are many things one can do to make it better we don't know of anything that will make it leave permanently in even a majority of cases.

And, by the way, I really don't mind or care about arguing with "leading experts" in any field. :) We all know that what is touted as fact today may very well be completely debunked tomorrow, as that is the nature of science and research.

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.

by the way...
Understand, 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.
 

fimi

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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?
 

JayCS

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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?
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.
So to answer your question about incorrect diagnosis twofold: The main problem is apparently the other way round, that not many enough are being diagnosed. But (disagreeing with Gross) your are right in that they are probably also not being tested enough.
So your worry is similar to the worry of the experts, but more because it's the other way round, actually both ways round: faster diagnosis but still further testing. That's I think why they changed it (I'll be reading up and expanding on that later, in answer to @sunkacola's valid objections).

As I'm in Germany, my 2nd rheum. was (I now know) still in 2020 authorized to base her diagnosis on the 1990! criteria, i.e. tender points. or the 2010 without, as she deemed fit. Having 18/18 tender points seemed to confirm it tho.
My 1st rheum first thought I had ankylosis spondylitis, was disappointed when tests came back negative, and just succinctly said I didn't look like fibro, referred me to neuro and endocrine. I took the negative results of these, plus of further tests (e.g. orthopedist) of my own accord, to the 2nd rheum. But I myself am never satisfied, so I'm furthest at the other end of the scale as far as testing goes, having seen >50 docs and 10 physios in 2 years. I get every single symptom checked up multiple times and it turned out I was right to do so. It was still clear to all incl. me that there is something else, which they don't understand. The new diagnosis MCAS seems to explain almost everything tho, but that would never have been appeared if not for the 2 jabs.
 
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fimi

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Any doc who cuts off at 3/W/S and not doing #4 = testing for further conditions is being negligent.
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.
 

JayCS

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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??
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".
Answering this Clauw in 2021 wrote an article he called "Time to Stop the Fibromyalgia Criteria Wars and Refocus on Identifying and Treating Individuals With This Type of Pain Earlier in Their Illness." Perhaps easier said than done.
But the 73% seems to be considered as over-diagnosing, like @sunkacola was fearing: if every single pain syndrome were suddenly seen as FM. They're aiming more and more for a compromise: getting diagnosis easier (so not just experts can do it) & quicker, but still accurate enough.

Both articles are behind a paywall. But I can read the first page of the latter, and it has a bit that explains the 3 main reasons they dropped tender points:
1) Fibromites have much more tender points than just 18;
2) males were being under-diagnosed, because they had less!! Explains why the ratio has gone up to 1.5:1....
3) practitioners weren't good at it, so were under-diagnosing.
Whilst I can't get at these articles without paying, altho I'd love to, there are good summaries of reviews/studies like these in the Spanish yearly reports of all important fibromyalgia studies, something I've also been wanting to get round to for ages...

I'll try to find answers to your question, of course, but all I'm reading is already showing that they are trying and succeeding in increasing and speeding up the fibromyalgia diagnosing process all the time. That's why the percentages of diagnosed are rising.
 
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JayCS

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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).
I'm also getting my supposition in my last post above confirmed: Whilst the AAPT 2019 criteria do include the various symptom areas, they are being deliberately simplified. ("The criteria comprise five domains: core diagnostic criteria; common clinical features; common medical comorbidities; neurobiological, psychological and functional consequences; and putative neurobiological and psychological mechanisms, risk factors and protective factors. The core diagnostic criteria for fibromyalgia include multisite pain, fatigue and/or sleep problems. These criteria are simplified in order to improve the identification of FM in clinical practice and for research purposes." (Central sensitivity and fibromyalgia, 2021, Mezhov / Guymer / Littlejohn, AUS)

The 2016-experts themselves say the basic criteria are not sufficient for clinical diagnosis: 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. These changes allow the criteria to function as diagnostic criteria, while still being useful for classification."
(2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria, 2016, Wolfe / Clauw et al.)
(Someone asked before that if criteria are changing who is included considerably, that would be a problem for all studies. (Toda, 2014).)

Still flabbergasted at only now finding out (now repeatedly) that the high female to male ratio was only due to tender points. Flabbergasted because I've already done so much 'research' and listening to lots of clever people...
So, still lots to find out! 👐 - and keep them questions 🗣️ coming... 🤯
 
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JayCS

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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.
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).
cancer is causing widespread pain ... Which can be cured. As opposed to fibromyalgia, .. no known cure. .... serious physical trauma ...
Misunderstanding: With "more than 3 months" they mean past, plus never-ending, i.e. chronic, as opposed to all these examples.
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.
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.
care about arguing with "leading experts" in any field. :) ... touted... today ... debunked tomorrow ... nature of science and research.
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.
Their reasons for these changes are to help us, they are trying to be on our side, and they are helping. The criteria makers are still fighting for docs not to discredit it as psychological & to keep to diagnostic criteria, by making them simple & effective, e.g. "The easy-to-measure and relatively reliable widespread pain criterion then came to define the disorder."

Additionally, along with the above they are wondering if fibromyalgia is not black and white, that you can have a certain amount of "fibromyalgianess". I don't think that's anything we need to rack our brains about as yet, though. ("increasingly recognized" to me means: that researcher believes so and is trying to convince others. Wolfe is clever, but I find him a bit over-convinced.)
"It is increasingly recognized that fibromyalgia represents a dimensional, non-binary condition and that features of fibromyalgia extend to persons who do not satisfy the criteria. .... The future of fibromyalgia as a discrete disorder remains uncertain as features of fibromyalgia are increasingly observed in patients with multiple different medical conditions." (Wolfe et al, 2021).
and "The fibromyalgia severity scale enabled fibromyalgia to be seen as a dimensional rather than as a discrete disorder. This scale has been referred as ‘fibromyalgianess’". (Mezhov et al, 2021).
(cf. the development of the various autism diagnoses to autism spectrum disorder)
 
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sunkacola

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The future of fibromyalgia as a discrete disorder remains uncertain
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.
 

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discrete disorder ... different conditions. ... few different names for the different parts of that scale
Yep, I'd also always agreed that I feel it'll turn out to be subgroups with varying characteristics.
But this "fibromyalgianess" (aside from that) apparently refers to a quantity / degree of fibromyalgia. Any ideas on that?
I chose autism as to me it seems like a combination of "characteristics" and "quantity" of autism - if that's true? (cf. 'scale'.)

Using "my" FM - there's no question that the amount of my fibromyalgianess is high, because my overall Ache rises quickly and is debilitating, despite having my local pains down. Due to my weird oversensitivities being older than my fibro, people touting MCAS could argue that my fibro is a part of of my MCAS, people touting FM could argue that the FM's severity is/was considerably higher.
But I spose the severity of my MCAS (sending me off work long-term, like FM once did) doesn't degrade the high fibromyalgianess?
I can imagine that I belong to a certain FM-subgroup tho that has nothing to do with MCAS as co-morbidity, not nec. vice versa.
 
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JayCS

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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.
Just realized I think this distinction would be less confusing if they would say on the questionnaires which is which.
(It's similar with MCAS, but distinguished using italics for the docs' part and calling it patient version, so sort of hybrid.)
"Questionnaire" or "checklist" will I think be a less confusing word than "test", like I'm now doing.
My suggestion for our "test" is to rename it questionnaire or checklist and refer to the fact that it is based on the 2016 criteria
(attached to this post) and is thus up-to-date, well reasoned and substantiated by studies, but is not a clinical diagnosis.

Also, I'd now suggest recommending people to be more confident that they may have fibro if the online questionnaire fits,
  • to use the questionnaire result to urge for either a FM diagnosis or good explanation why not,
  • to continue getting appropriate tests for similar conditions, even after an FM diagnosis,
  • and to look for prevention / alleviation / treatment of symptoms, not just "putting them down" to FM.
 

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sunkacola

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But this "fibromyalgianess" (aside from that) apparently refers to a quantity / degree of fibromyalgia. Any ideas on that?
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.

For instance, that one-to-ten pain scale. I have known, and also heard of from doctors, people walking into the doctor's office or pain clinic and saying that they were experiencing pain that was a 10 on the 1 - 10 scale. Now, I couldn't ever do that, because to me a pain level of 10 means I am on the floor, unable to do anything but writhe or hold very still and perhaps moan. I cannot talk let alone get up and walk! I have had that kind of pain (not associated with fibromyalgia) and so I know what that is like. While I know myself to have a high pain threshold, I also suspect that anyone walking into the doctor and reporting that their current pain level is a 10 has never had that kind of pain.

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.
 

JayCS

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For instance, that one-to-ten pain scale.
Interestingly, they actually don't think nec./sensible to ask for pain severity, just how widespread it is (to exclude all regional pain conditions).
Whilst the Symptoms Severity Score (SSS) only considers a) fatigue, b) waking unrefreshed (clever one, that!), c) cognitive symptoms
and distinguishes mainly "2 = moderate, considerable problem, often present" from "3 = severe, pervasive, continuous, life-disturbing."
plus if a) headaches, pain, b) cramps in lower abdomen, c) depression were a 1 = problem, or 0 = not.

So they measure fibromyalgianess by the severity of those 3 plus 3, plus how widespread the pain is.
For me it works: my SSS and my WPI are high, my fibromyalgianess severe ✅. And they say it works better than other ways of diagnosing.

Edit / Part 2: Oh, and to come back and clarify why "diagnosis of exclusion" is inappropriate and outdated:
These criteria may be vague, but they are clearer and work better than just a diagnosis of exclusion, which is "We can't see/find anything".
There are many diagnoses where docs "can't find anything", but they are not all chronic widespread pain diagnoses with fatigue, insomnia etc., which is what fibromyalgia is. So previous arguments clarify that "exclusion" is not a sensible definition.

Edit / Part 3:
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.
Here the problem is that almost all of our symptoms are self-reported and partial (the reason for the psycho prejudice).
Wolfe (2009 in Fibromyalgianess) - explains how Fibro-Symptom Intensity (SI) helps distinguish FM in people with the 28-Joint Disease Activity Score (DAS28) in rheumatoid arthritis (RA) and refers also to high pain tolerance & threshold in some "robust" type RA-patients.
Part of the DAS28 score is also self-reported. It's necessary to look closely. With higher fatigue their fibromyalgianess is higher: RA+?FM.
There can be no (more) accurate diagnostic indicator in FM. And the "diagnosis of exclusion" criterion was quite the opposite.

Funny how your asking back without looking at them yourself is helping me see things I otherwise wouldn't have, so please keep arguing! 👐 :cool:
 
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