ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

[Sly Saint]

I've only very recently started thinking about FM (which is apparently also known as Fibromyalgia Syndrome) and people being diagnosed with both ME (or CFS) and FM.
I know that at one time FM was included under the 'M.E. umbrella' (and by some continues to be so, or the CFS one) but I cannot see how you can have both when FM patients have embraced GET as beneficial.
They (FM Action UK) have produced a DVD :


which is being widely promoted by the FM Association.

(that is not to say that pwME do not suffer with pain). I wonder how the FM version of GET compares to say the PACE/CFS version? and if their version of CBT is also the directive PACE/CFS variety. Are there any patient surveys on the subject anywhere?

 

[Jonathan Edwards]

I think the tender point test is a hang over from the previous concept of 'fibrositis' in which there were supposed to be tender inflamed muscle 'nodules'. Like costochondritis it was a convenient label for doctors do produce when they thought nothing much was wrong. But then when it came to trying to define the pathology of this mysterious fibrositis nobody could find any nodules or any muscle pathology.

Somehow fibrositis morphed into the different concept of fibromyalgia as some sort of neural 'sensitisation' syndrome. But the tender points got carried over. I am pretty sure that there was a study around the 1990s that showed that the tender point score was totally unreliable and told you nothing. I suspect that it arose by confusion with real local tender sites occurring in common local syndromes. The points on the chart I found on the internet include the points for:

Tenderness at the top of cervical extensors that commonly occurs after things like driving.
Tenderness along upper trapezius that commonly occurs after carrying.
Tenderness of lateral elbow epicondyle - i.e. tennis elbow.
Tenderness of greater trochanter - as in bursitis or tensor fascia late syndromes.
Tenderness of medial knee joint line - very common with meniscal wear and associated knee soft tissue problems.
Tenderness of glutei - common in muscle spasm associated with sciatica.
Tenderness of levator scapulae area - a very common muscle pain almost everyone gets at some time

I.e. these are pretty much the commonest areas to be tender in general. So if a physician or occupational therapist wants to show how clever they are by magically finding 11 tender points on you these are the obvious ones to go for!

 

[chrisb]

I know that at one time FM was included under the 'M.E. umbrella' (and by some continues to be so, or the CFS one) but I cannot see how you can have both when FM patients have embraced GET as beneficial.

I am fairly sure that in my recent readings I have seen the argument that exercise had been shown to be beneficial for fibromyalgia therefore it must be good for ME. From such tenuous foundations did the GET for ME religion commence. I think it might have been Edwards- the other one

 

[Melanie]

I guess it's possible that some people currently diagonosed with fibromyalgia actually have mild ME and happen to present to their doctor with pain as their dominant symptom, since it's easier to explain and ask for treatment for than explaining the weirdness of PEM if you've never heard of it.

I think that is true. But, just like doctors not carefully following any diagnostic criteria when there is not a diagnostic test there are sure to be some who are misdiagnosed. I think there have been some misdiagnosed with CFS when they have had any number of illnesses, even Fibromyalgia because the doctor did not really follow the criteria. And if they were working with Fukuda anyone with fatigue could have CFS. But CFS was still a real disease.

The truth is, both Fibro criteria are pretty accurate if you actually follow the criteria set out in the material. I have both Fibro and ME/CFS and both my diseases are very distinguishable. I onset with Fibro at puberty and then at 17 got wallopped with the worst case of Mono the doctor ever saw. And the first symptom I picked up on after I recovered from Mono was that I could no longer stand for long periods at my job (orthostatic intolerance) so I had to change to an office job where I could sit but I noticed my cognitive abilities had also taken a hit.

Also, I had different doctors diagnose my Fibro and ME/CFS. An alternative doctor and my Rheumy diagnosed me with Fibro, but that same Rheumy also diagnosed me with CFS. And then I was eventually disabled with both of them through SSA.

And I don't think PEM is hard to explain. As a matter of fact, the first time I read about PEM and it was explained that symptoms and fatigue will come on 24-72 hours later, EVERYTHING fell into place.

 

[TrixieStix]

I spent the past 4 years almost totally debilitated from pain, fatigue & neurological symptoms. Every specialist (various rheumatologists & neurologists) I saw brushed my symptoms off as "just" Fibromyalgia. and told me to exercise. I feel a lot of anger towards those doctors.

I need to make sure "Fibromyalgia" is taken off my list of diagnoses. I would be happy if I never heard or saw the word "Fibromyalgia" again the rest of my life.

Also I believe the Fibromyalgia "tender points" were removed from the diagnosis criteria here in the US a few years ago.

 

[TrixieStix]

"The 2010 diagnostic criteria was updated in 2011 and most recently, in 2016. The 2010 fibromyalgia diagnostic criteria removed the 18 tender points examination standard, changed the fibromyalgia definition, gave widespread pain numerical measures via a widespread pain index (WPI), incorporated fibromyalgia’s many symptoms, created a symptom severity chart, and gave fibromyalgia acknowledgement as a real medical condition."

I personally lean towards "Fibromyalgia" not being a distinct condition, but instead a label used to describe symptoms for which the true cause has not been identified and/or investigated properly.

I feel the same about "Irritable Bowel Syndrome" (IBS) in that doctors use it as a catch-all when they don't know the cause of someone's bowel symptoms. I was diagnosed with IBS for many years until it was discovered that I actually had severe endometriosis which had infiltrated my bowel and was the cause of the symptoms.

 

[Karen Kirke]

I’m not convinced that the evidence for exercise being effective in fibromyalgia is much stronger than for us. (Although I get the impression that there is less patient evidence of harm.)

Would be interested in your thoughts @Jonathan Edwards ? It seems like the fundamental issue of (mainly) subjective outcomes and lack of blinding will affect this evidence base too. And the Cochrane review of aerobic exercise for fibromyalgia http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD012700/full doesn't make exercise sound particularly helpful:

When compared with control, moderate-quality evidence indicates that aerobic exercise probably improves HRQL and all-cause withdrawal, and low-quality evidence suggests that aerobic exercise may slightly decrease pain intensity, may slightly improve physical function, and may lead to little difference in fatigue and stiffness. Three of the reported outcomes reached clinical significance (HRQL, physical function, and pain). Long-term effects of aerobic exercise may include little or no difference in pain, physical function, and all-cause withdrawal, and we are uncertain about long-term effects on remaining outcomes.

Best estimates of what happened in people with fibromyalgia when they did aerobic exercise compared with when they received control interventions. Each outcome below was measured on a scale from 0 to 100, on which lower scores were better.

HRQL after 12 to 24 weeks: People who exercised were 7% better (or 7 points, ranging from 3 to 13 points) and rated their HRQL as 48 points versus 56 points in the control group.

Pain after 6 to 24 weeks: People who exercised were 11% better (or 11 points, ranging from 4 to 18 points) and rated their pain as 56 points versus 65 points in the control group.

Fatigue after 14 to 24 weeks: Those who exercised were 6% better (or 6 points, ranging from 12 better to 0.3 worse) and rated their fatigue as 63 points versus 68 points in the control group.

Stiffness after 16 weeks: Those who exercised were 8% better (or 8 points, ranging from 1 to 15) and rated their stiffness as 61 points versus 69 points in the control group.

Physical function after 8 to 24 weeks: The aerobic exercise group was 10% better (or 10 points, ranging from 15 to 5) and participants rated their physical function as 37 points versus 46 points in the control group.

They also say (again, in relation to fibromyalgia):

Aerobic exercise does not seem to improve fatigue.

When Clauw (a fibromyalgia researcher, as I understand it) wrote his commentary on the GETSET trial https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30577-9/fulltext, he suggested that exercise is better for fatigue than for other domains in both CFS and fibromyalgia:

The results of the GETSET trial are consistent with other work on exercise as a treatment of fatigue in chronic fatigue syndrome and other related conditions such as fibromyalgia, in which exercise has also been used as a non-specific treatment since the cause of these conditions is not entirely clear. Results from these studies also typically show that the effect size for fatigue is often similar or greater than the effect size seen for other domains such as function, pain, and mood. Thus, results of the GETSET trial add to the accumulating evidence that graded exercise (with or without cognitive behavioural therapy) should probably be considered the gold standard for treatment of fatigue in chronic fatigue syndrome and related conditions.

That doesn't seem to tally with the Cochrane review of aerobic exercise for FM. What is striking from the review is just how much exercise the FM patients were doing/expected to do in the studies. One study's participants did 45 minutes of "movement to music and games" three times a week. In the 45 minutes was
a 23 minute warm up with 2 peaks of high-intensity training of 3-4 minutes each
and 15 minutes of aerobic games with 2 high intensity periods of 5-6 minutes with 4 minutes calming down in between.
This was described as light to moderate intensity.

It highlights how important it is for the data on exactly how much exercise CFS patients do in exercise studies to be reported, e.g. patient X started at 2/5/10 mins walking per day and at the end can do 1/6/10/50 mins walking per day. I think we need this information to make meaningful comparisons with people with other conditions and to report how much aerobic exercise people can tolerate.

 

[Jonathan Edwards]

Would be interested in your thoughts @Jonathan Edwards ? It seems like the fundamental issue of (mainly) subjective outcomes and lack of blinding will affect this evidence base too. And the Cochrane review of aerobic exercise for fibromyalgia http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD012700/full doesn't make exercise sound particularly helpful:

I think that, again, it shows that Cochrane cannot be relied on to produce rigorous work. The review is pretty similar to that for ME - in showing a complete lack of understanding of the pitfalls of trials.

 

[Melanie]

I personally lean towards "Fibromyalgia" not being a distinct condition,

I have Fibromyalgia and I fit the 1990 criteria, 2010, 2011, and 2016. When one doesn't have the disease they can't believe it is real. But when you have it you know it is real and the criteria fit. And it is the same with ME/CFS and you have been diagnosed with it. You know when you fit the criteria, that it is real, and that the criteria fit.

I’m not convinced that the evidence for exercise being effective in fibromyalgia is much stronger than for us. (Although I get the impression that there is less patient evidence of harm.)

I was Dx'd with Fibro 2 years before CFS (as it was referred to back then) but I had already been told to walk for my Fibro dx. And then no one stopped me from walking when I got the CFS diagnosis. And then 2 years later I imploded due to the ME/CFS. Perhaps it was not good for Fibro either, but I now know for certain that it was not good for the ME/CFS.

I have IBS with constipation. I have had an colonoscopy and blood test to check for celiac and any other damage that could have resulted from any other condition or disease. Nothing. When you have IBS, you fit the criteria.

Too many doctors are not running tests to check for other conditions and do not follow criteria for the disease they are diagnosing you with. Pain is not the only symptom with Fibro and that is where doctors are erring. They don't care to run test after test and refer patients to specialist after specialist to track down what is really going on. In the US, doctors are up against insurance companies.

Muscle pain (different than the tender points areas), IBS, fatigue/tiredness (and as we know, it is PEM and not fatigue or tiredness in ME/CFS), thinking or memory problems, muscle weakness, headache, numbness/tingling, dizziness, insomnia, (and RLS and sleep disturbances) nervousness, constipation, chest pain (costochondritis), dry mouth, itching, ringing in ears, dry eyes, shortness of breath, rash, sun sensitivity, easy bruising. And I fit whichever criteria one follows. I onset gradually with Fibro at puberty. The 2010 criteria list these conditions clearly and even more on page 3, some I don't have but I certainly have enough of them. And page 1 where you check off where you have felt pain, well, don't get me started. I have everything but the Abdomen and left Jaw. I also have severe menstrual cramps which are also known to happen with Fibro.

Again, I had Fibro first and then ME/CFS five years later after mono. You have to live it to know the diseases and understand the difference.

Some might argue how can you tell the difference between Fibro and ME/CFS. PEM. And Fibro has that pattern of pain that usually does not fit ME/CFS.

 

[Melanie]

Also, I have heard of people's doctors not checking their D levels and diagnosing them with Fibro. They eventually had their D checked by another doctor, went on D supplements and the pain went away.

Fibro, it isn't just pain. Like ME/CFS, it isn't just fatigue.

 

[Trish]

Thanks for sharing your experience, @Melanie. I find it interesting.

I have not seen or done a Fibromyalgia questionnaire like the one you shared before. If I have filled it in correctly, I have both Fibro and ME, and have had from the start of my ME. But the diagnosis that makes sense to me for myself is ME because, as you rightly point out, it includes PEM, which for me is the most disabling part.

I see no particular point in saying I have fibro as well, since all the symptoms on that questionnaire are also ME symptoms. It seems unlikely that I acquired two separate conditions on the same day. I'm not sure where that leaves me diagnostically.

Until we have biomedical tests that can sort out ME from other overlapping and separate conditions, it's hard to know whether fibro is a completely separate condition, or part of a continuum where some people have pain and others have PEM and some have both.

 

[Melanie]

Thanks for sharing your experience, @Melanie. I find it interesting.
It seems unlikely that I acquired two separate conditions on the same day.

That is true and that is where common sense needs to come in. Yes, it is unlikely that you acquired two seperate conditions in one day.

Key is usually the onset. Although that can be a tangle also. I believe Fibro is a seperate condition mainly due to onset and the lack of PEM. I never had PEM or OI before being hit with Mono.

 

[Karen Kirke]

I think that, again, it shows that Cochrane cannot be relied on to produce rigorous work. The review is pretty similar to that for ME - in showing a complete lack of understanding of the pitfalls of trials.

Thanks for that. Hm. And the consequences of that can be that clinicians continue to recommend ineffective or even harmful treatments.

I did think the fibromyalgia review demonstrated more insight into the issues than ours e.g.

Studies were at risk of selection, performance, and detection bias (owing to lack of blinding for self reported outcomes) and had low risk of attrition and reporting bias.

We downgraded the evidence owing to the small number of included trials and participants across trials, and because of issues related to unclear and high risks of bias (performance, selection, and detection biases).

and some caveats are stated too:

Aerobic exercise appears to be well tolerated (similar withdrawal rates across groups), although evidence on adverse events is scarce, so we are uncertain about its safety.

Perhaps, at a certain point in the review process, the team should be switched to people outside the field, who can view the evidence dispassionately and tell it like it is. With so many reviewers from "Schools of Physical Therapy", would they ever really say "Exercise is ineffective for fibromyalgia"? Or is this them saying that, or as close to it as they can get, but too subtle for most clinicians to pick up on?

Am not looking for answers to these questions, just thinking aloud!

 

[shak8]

I am saying that people have all sorts of chronic pains, yes, and some people have pains in many places, yes, but in all my career as a rheumatologist i have always tried to find the most plausible physical explanation for each pain. Having done that I am not sure that I ever came across anyone for whom I needed some extra term like fibromyalgia.

The problem for me with the shorthand term is that it is illogical to look for one. It also encourages doctors to skip the business of trying to find a plausible physical explanation and to jump to an 'explanatory' term that in fact explains nothing. It seems that the word fibromyalgia is used by doctors in two ways. The great majority of doctors assume that fibromyalgia means there is nothing really wrong but it is better to give the patient a name to keep them quiet. A smaller group, that may have included Wolfe, thought that there was a physical 'disease' called fibromyalgia that caused the pain, at least in 1990. But people who get labelled as having fibromyalgia are so heterogeneous this seems pretty unlikely. Moreover, as I say, in my experience the great majority of chronic pains are explainable in ordinary musculoskeletal terms. I have chronic widespread pain that significantly reduces my function and does not go away with rest or exercise or sleep (it is worst in the morning). And I know that it is due to a combination of a large disc prolapse leading to bone encroachment on my lumbar nerve roots, a permanently dislocated left acromioclavicular joint, a rotator cuff tear in the right shoulder, cervical disc degeneration and worn cartilage in both knees. I think it very likely there are lots of people much worse off than me for similar sorts of reasons.

I have mentioned in the past that I did not recognise ME as a useful diagnostic term when I was practicing. I have learnt that I was wrong. But ME only affects about one person in 500. Moreover, it does not tend to be seen by rheumatologists so much as neurologists or endocrinologists I suspect. In retrospect I probably saw half a dozen people with ME over the years and looked after them as best I could on the basis that I could not explain their disabling symptoms but was happy to try to provide some continuity of care.

In contrast, chronic widespread pain would be expected to go almost exclusively to rheumatologists. If it is supposed to affect a few percent of the population then I ought to have seen dozens of cases. I saw lots of people with pains in many places but I had no reason to think there was any value in lumping them together. ON the contrary, my job was to sort out what each of the pains was most likely due to.

Maybe there is a real syndrome of widespread pain that I never came across because it is in fact quite uncommon - maybe less than one person in a thousand. But the diagnostic criteria for fibromyalgia do not suggest that even the fibromyalgia enthusiasts had identified any very specific syndrome - it just seems to be a rag-bag of lots of unexplained pains. And when I came across patients who had been diagnosed by my colleagues as 'fibromyalgia' they seemed to have nothing much in common and in fact most of them seemed to have a plausible identifiable cause. The one time I allowed myself to decide a chest wall pain had no real physical cause it turned out three months later to be lung cancer.

What I do accept is that a proportion of PWME seem to get a lot of pain that is not obviously due to local limb problems etc. That to me suggests that the pain may have a cause a bit like the pains we get with flu - in that case presumably mediated by the hyperalgesic effect of cytokines.

In other words I fully accept that there are people with chronic pains in several places but the 'shorthand' term of fibromyalgia seems to me to do entirely the wrong job. A useful medical description of my pains takes 39 words. In the case of most of my colleagues my impression has been that shortening that sort of description to fibromyalgia was just laziness.

I do believe you and Dr. Wolfe are dead-wrong about there not being a fibrositis diagnosis (updated to fibromyalgia). It is a constellation of symptoms, severe symptoms, and yes, there is overlap with autoimmune diseases as well. In my case, non-specific autoimmune disease with secondary fibromyaglia, diagnosed by a Johns Hopkins trained rheumatologist on the team that formulated the 1990 diagnostic criteria.

I do think that the diagnosis has been given out like candy to children by doctors who may not be that brillant. But many many patients have been referred to rheumatologist by their GPs for diagnosis by ruling out all else known diseases. I know fibro doesn't have an easy marker but at least the name is a start in the right direction. Respectfully yours, shak

PS I have corresponded with Robert Bennett, Rheumatologist and researcher at Oregon Health Sciences Center at Uni of Oregon. He discovered the low growth hormone in fibro patients of whom he had about 4500 coming to his clinic.

 

[WillowJ]

ETA: I don't really have tender points either, so I believe it's all part of my ME.

I don't really have tender points, either.

Before that some doctors would diagnose "myofascial pain syndrome" if the tender point criteria wasn't met. Others would go ahead and give the fibro diagnosis.

However the latest fibromyalgia definition got rid of the tender point criteria.

In my particular case, the fibromyalgia was a misdiagnosis for hEDS. Some EDS doctors say the tender points correspond to points where there are tendons that might be sore (I think that was it), if there's a problem with how collagen is formed. (Especially if you go around poking it very hard, as it's pretty easy to make micro-tears in stuff when you have EDS.)

However I think fibro is a common misdiagnosis for ME, too (and I think many rheumatologists currently don't know/care the difference--even the ones that believe it's physiological).

Of course there are other possibilities.

ETA: I really enjoyed reading everyone's fibromyalgia stories. Thanks for sharing.

 

[Jonathan Edwards]

I know fibro doesn't have an easy marker but at least the name is a start in the right direction.

I worry about this. All the doctors I know who diagnose fibromyalgia will also support the biopsychosocial model in departmental discussion. Fibromyalgia is almost universally used as a codeword for psychosomatic. Patients do not get told that.

Low growth hormone levels occur in people who do not do vigorous exercise, so I am not sure what they tell us in people with pain.

 

[oldtimer]

After reading this thread I have finally sorted out in my mind my own Me and/or FM riddle.

A very long time ago I was told I had both and have been in a state of confusion ever since, trying to separate the two and getting in knots. I have a lot of assorted pain that is easily explainable and nothing to do with ME or FM. That just leaves an overlay of some nasty peripheral neuropathy and the all-over aching that accompanies ME and gets worse with PEM. But it all gets confused in the moment.

The reason I was more or less convinced about FM is that my unidentified achiness was, and is, fairly erratic in severity, and I was told this was typical. Now, I don't believe I have ever had FM - if there actually is such a discrete condition.

Thanks everyone for the discussion

Oh, and I never had tender points either.

Edited for extra clarity

 

[unicorn7]

I have declined a fibromyalgia diagnosis very often I have the feeling it's pretty much the same kind of diagnosis CFS or IBS is: a waste basket diagnosis, so doctors don't have to look any further and it's a term to let other doctors know that "everything" has been looked at and there should be no more diagnostic search.

It's also a self-fulfilling prophecy, we call something IBS because we don't know the reason, but we don't know the reason because we call it IBS We know that a lot of diseases are coming with bowel disturbances, so then we don't call it IBS, because we know it comes with the disease.
We may not have a perfect clinical easy solution for IBS yet, but the research is very clear that it's a bunch of different microbiome-related problems. There are even a lot of easy solutions like antibiotics or feces transplants. I can seriously not respect anyone who still says that IBS is MUS, that only means that they don't read the research. The people who say it's MUS, are people who research MUS! They don't research or even read the research on IBS! Same with ME or FM.

The problem with all this research is that the criteria are loose and it's a spectrum from a healthy person experiencing some pain or fatigue to a severely debilitating life-long disease and it's all put on one gigant heap

My ME first manifested as a lot of pain, because I was mild and I could just push through the weakness. I have always had "normal" chronic pain, after injuries or something. I had this since puberty and it was already pretty abnormal how long I had problems after falls or injuries. These pains were treatable by physiotherapy/chiropractic etc, so it was just normal musculoskeletal injury-related pain. Actually all the women in my family experience this overreacting of their muscles and tendons after injuries. We know it's abnormal to be this prone to injuries, but we find it almost normal and just have a membership card for the physiotherapist. Very annoying, but we can all live with it.

Doctors have seriously no idea how to treat musculoskeletal pain, I don't know why that area is so ignored in medicine.

With ME there was the whole body pain that you get when you have the flu, massage is horrible and even makes it worse. It's more a whole body tenderness, where touching your skin is already painful. I found that with rest that went away, so for me that is all ME and the effects of pushing through.

 

[shak8]

I finally get your points about the difficulty of diagnosing what may or may not be a discrete set of symptoms, of what is termed fibromyalgia or myofacial pain syndrome, whatever that is.

https://www.sciencedaily.com/releas...romyalgia+(Fibromyalgia+News+--+ScienceDaily)