Fibromyalgia

Factual Questions
41

paperbackwriter: I appreciate your apology, and will offer mine: I apologize.

Misconception #4: That hypothyroidism due to reduced bioactivity of T3 is diagnosed clinically. Well, it may be suspected clinically, but to establish a diagnosis (as opposed to an educated guess or mere speculation), one documents evidence of reduced thyroid hormone action (in the presence of normal thyroid hormone levels) such as low concentrations of sex-steroid binding globulin, angiotensin converting enzyme, ferritin, or even factor VIII.

Misconception #5: That if one rules out all but one cause of a set of symptoms, the diagnosis must default to the one remaining cause. This is only true if a) there is zero possibility of other causes that you simply aren’t aware and b) that one of the possible diagnoses isn’t ‘functional’ (i.e. somatic manifestations ultimately due to psychological processes). If those conditions aren’t satisfied then you run the risk of shooting yourself in the foot because of diagnostic hubris (as might occur in ‘a’) or you falsely label a primarily psychological disorder as being “organic” (as in ‘b’)

Misconception #6: You seem to be using the terms etiology and pathogenesis interchangeably But they are not at all equivalent. Beyond that, though, every one of your examples is chock full of objective findings - some on physical exam and some on lab testing and/or imaging. All of which is unlike entities such as fibromylagia and chronic fatigue syndrome.

I will ask again (since the demonstration of abnormalities like those you noted in patients with fibromyalgia could be a game changer): Can any of those studies distinguish between phenomena that are due to fibromyalgia versus phenomena that may arise in any person who’s been experiencing chronic pain, stress, depression, sleep disturbance, etc., or possibly even due to the antecedent treatments the study subjects had undergone earlier?

(Oh, by the way, I do have a passing familiarity with the term ‘differential diagnosis’ and have even generated a differential or two in my time.)

P.S. Is your flip-side “Rain”?

42

To settle the discussion once and for all:

There is no objective diagnostic test available for fibromyalgia. There is no difference in a physical objective examination between a person suffering from fibromyalgia, and one who is not. This is not in dispute.

This doesn’t mean that fibromyalgia is all in the head, or that it isn’t real. All it means is that we don’t know enough about the condition to determine what it is. People respond to actual medication for fibromyalgia better than they respond to a placebo, which would indicate to me that it’s a legitimate disease.

43

I’m really not trying to be difficult, but I’d say that just means that they had symptoms which responded to the medication they took; you can’t conclude much, if anything, about the underlying illness e.g. many types of pain, due to many different causes, will each respond to nonsteroidal anti-inflammatory drugs such as ibuprofen

44

I can certainly confirm this. I’ve had the good fortune to read a few of the good Doctor’s academic writings, as found in some of the better medical journals. I would think long and hard before disputing his diagnostic acumen, and frankly concur with the skepticism expressed by him in this thread about what really constitute the facts regarding Fibromyalgia versus educated guesses and tentative hunches.

I too have many more questions about this entity. I admit something may be there, but just what Fibromyalgia is has not been clearly established. Hypotheses abound (many of them ingenious and possibly correct), bona fide theories are still lacking.

45

It’s real. Oh believe me, it’s real.

I have rheumatoid arthritis. Before I went on Humira (which is a miracle drug IMNSHO), I would have flare-ups and constant joint pain. The body is continually trying to find a position to get into that will relieve that pain, even when you are asleep. Eventually your muscles get super-fatigued and they hurt constantly, even as bad as the joints sometimes. Textbook case of Fibromyalgia.

When that happened to me, Mr. Flexoril was my very good friend.

46

I think fibromyalgia is similar to having multiple extreme enviromental allergies or seizure disorders. Sometimes it’s real and sometimes it originates with or is exascerbated by emotional problems. With fibromyalgia the black & white testing is really not there yet. From what I hear there may be a strong immune system connection. As our world becomes more contaminated it makes sense (at least to me) that we’d see more people developing fibromyalgia. On the other hand, somatoform disorders have existed as long as people are alive. Sometimes people are just disturbed & looking for a label that will allow them what they feel they need to cope, even if it’s not ultimately a positive solution.

47

Contaminated with what? Are you suggesting a link between fibromyalgia and pollution? There is no evidence to support that connection, as far as I know.

48

The U.S. National Library of Medicine says, in part, “The etiology of autoimmune diseases is still not clear but genetic, immunological, hormonal and environmental factors are considered to be important triggers”. There is a theory that fibromyalgia and other diseases such as chronic fatigue syndrome are related and that they may have an autoimmune component.

49

None of that necessarily points at pollution, however. “Environmental” in this context just means “stuff around you.”

50

The article is here: Infection, vaccines and other environmental triggers of autoimmunity - PubMed

Alongside genetic, immunological & hormonal factors proposed as possible triggers are occupational and other chemical exposures.

It’s certainly not definitive but well worth investigation.

51

I am a chronic pain sufferer without a solid diagnosis, however fibromyalgia has been excluded. I’m not sure what has led my doctors to that conclusion, but I do know that my pain is very joint specific and I only have a few of the trigger points. So, if fibro can be excluded, it appears that it is a “real” disease/syndrome. Also, I don’t know if depression causes fibro, but I do know that long term pain causes depression!

And, KarlGauss seems to think that a disease/syndrome is only “real” if there is a definitive test for it, is that right? If so, there don’t seem to be many chronic pain diseases that have a definitive test - for example, my blood tests show that I have rheumatoid arthritis (which was my first diagnosis), yet in the years since then I haven’t developed any of the physical changes so apparently I don’t have that. Or maybe I do and it is merely progressing slowly. It doesn’t appear that a lot of chronic pain can be definitively diagnosed.

52

I’m not Karl Gauss and I’m not anything medical, so this may be rubbish, but I don’t think this is what he was saying. All diseases are real before there’s a test for them - a few generations ago I doubt there was a definitive test for diabetes, for example, but it was just as real then as it is now. I think what KarlGauss was saying is that *we’re only in a position to conclude definitively *that a disease is real if there’s a definitive test for it. The disease’s reality or lack thereof remains unchanged, but our knowledge of it changes, and our perception of the disease can only be based on that knowledge.

53

KarlGuass, genuine information-seeking, overcoming-ignorance-on-my-part question here: I’ve read your responses up thread with interest, and unless I overlooked it, you haven’t addressed the specific fact that changes in the brain have been detected in fibro patients using fMRI. Now, this may not qualify as a true diagnostic investigation at this time, but I’d be curious about your response to these findings.

Or, to have gently pointed out where you addressed this and I didn’t see it :wink:

54

I mentioned schizophrenia earlier as a disease that (AFAIK) has no specific test and is, in a non-pejorative sense, “all in the head”. That being said, I have no doubt it is very much a “real” disease (much of which we remain ignorant about). I say that because:

  • it has a clear epidemiologic pattern (e.g. we know that young adults are at highest risk)
  • it occurs throughout the globe (again, most commonly in young people)
  • we have some sense of its pathogenesis, i.e. an excess of dopamine
  • there is a consistent set of symptoms and signs which don’t overlap with “normal” (e.g. auditory hallucinations, clear evidence of a thought disorder, etc.)
  • we can be reasonably confident that the specific therapy of dopamine antagonists (e.g. drugs like haloperidol and clozapine) will bring some relief (but, I admit, not a cure)
    Given all this, the fact that there is no blood (or other) test for schizophrenia, is, IMNSHO, irrelevant

In contrast, although fibromyalgia does have a distinct epidemiologic distribution, it is almost unheard of in certain parts of the world (which I admit can occur with more traditional diseases, as well). Further, there is no agreement on its pathogenesis (what processes cause it to come about; what is going on at a more basic level to explain its symptoms) and, critically, many of its symptoms are found in, or overlap with those of, “normal” individuals. Likewise, there are also no fibromyalgia specific medications (AFAIK). Phrased differently, anyone with an ache will likely get some relief with drugs like ibuprofen (which is used in fibromyalgia). On the other hand, only people with psychoses due to dopamine excess will be helped with haloperidol.

In terms of diagnostic tests, the example above of rheumatoid arthritis being diagnosed by a blood test illustrates an important point. Rheumatoid arthritis is diagnosed clinically - by the history and physical. If a person has no symptoms and signs of rheumatoid arthritis, then it doesn’t matter what the blood tests say, they don’t (currently) have the disease. Likewise, many people with obvious, classic rheumatoid arthritis do not have positive blood tests. This is all very much like the expression “one treats the patient, not the blood test result”. So, the absence of a test for fibromyalgia actually isn’t all that important (at least in the way I look at things).

In terms of the various abnormalities that have been reported in the brains of people with fibromyalgia, that, indeed, as I said earlier, could be a “game changer”. However, before any conclusions can be drawn, it is essential to make sure that the findings reported are not simply a reflection of chronic pain itself, disturbed sleep, “stress”, depression, etc. In other words, did the studies in question use controls who not only didn’t have fibromyalgia but DID have chronic pain or sleep disturbance, etc.? A comparison of people with fibromyalgia with asymptomatic normal controls is not what we’re interested in - we need to see if fibromyalgia, above and beyond the pain, stress, and disturbed sleep associated with it, is responsible for the observed changes.

Finally, I will be honest and say that, yes, I am biased - my sense is that fibromyalgia is not a disease in the same way that schizophrenia is a disease, and definitely not in the way, pneumonia is a disease. The origin for my prejudice comes from my personal experience in dealing with people diagnosed with fibromyalgia. My impression of such individuals has been that they are depressed, or simply not able to cope with the day-to-day pains we all get, or aren’t sleeping well, and rather than accepting those explanations they seem, instead, to require a label, a diagnosis. It’s as if getting the label validates them and the way they are feeling. It’s as if they can say, ‘hey, it’s not me, it’s this damn disease that’s making me feel so rotten’ (and not the fact that they haven’t exercised in six years and sleep four (or eleven!) hours a night. It is also possible that the people I’ve encountered with fibromyalgia are not representative. That’s always possible when you base an opinion on things like this on personal experience.

55

Small addendum to KarlGauss’s statement above - no drugs are specifically (primarily) FDA-approved for fibromyalgia. Two older drugs (duloxetine/Cymbalta and pregabalin/Lyrica) were previously approved for other uses and then approved later for fibromyalgia.

Cymbalta is a serotonin-norepinephrine reuptake inhibitor that is primarily used for major depression, but also has other uses such as for generalized anxiety disorder and diabetic neuropathy (but apparently without halting nerve damage in the latter case). It appears that in the fibromyalgia trial, it had no effect in men and only worked for about a month in women. Lyrica is an anticonvulsant used for seizures and neuropathic pain. The FDA press release says the method of action in fibromyalgia is unknown. Judging by the original study’s text (check the wiki, reference #3), on average it improved pain by almost 1 point on the classic 1-10 scale.

56

Well, I’m going to tell KarlGauss something I haven’t even told my closest relatives – I’ve been diagnosed with fibromyalgia. Three times. The first time was almost two decades ago by my GP when I meekly showed up in her office with printouts supporting my self-diagnosis, at which point she said, “That makes perfect sense. I would have never put that together since you don’t complain.” She had actually just returned from a seminar about it and advised me to get good sleep since it had been linked with a shortgage of that rejuvenating REM, and get exercise so you are tired enough to sleep as well.

Fast forward 15 years of still feeling crappy. Bloodworks shows elevated SED rate so referral to a rheumatologist. “Fibromyalgia. Take some Tylenol.” Alrighty then!

A few more years of feeling crappy (as in wake up with that run-over by a truck feeling, painful to be touched, always cold, fascia is tight and painful-- just ask the massage therapist I nearly punched out when he tried skin rolling on my arm, blah blah blah.) More bloodwork, even higher SED rate, postive ANA. Different rheumy – well respected University-professor-in-a-teaching-hospital rheumy – noted that I responded (violently) to all of the trigger points. “Fibro – plus something else.”

Now, I’m not depressed. I sleep between 7 1/2 to 8 1/2 hours a night in a comfortable bed in a dark room with no TV (optium for good sleep.) Until the “something else” attacked my Achilles tendons I played tennis , rode my bike, took fencing lessons, and trained and rode my horse. I went disc golfing today on my lunch break from my (lately) 60 hour a week job. I don’t think I’m typical of your experience with fibro patients. There’s something wrong with me, I wish it wasn’t because I think I’d live life more fully without pain, but I don’t whine about it or even tell people I have it. I try not to feel guilty about the days when normal things are just too much effort but I realize I don’t have it that bad compared to most.

So, I get a little defensive when all fibro patients are lumped into a “hiding from life” sort of category. I guess I’m very I’m lucky that the professionals I seek medical care from actually “believe in” fibromyalgia and don’t try to blame me for the rather unpleasant syndrome they tell me I suffer from.

And as an aside, I’ve had some traumatic injuries and a mystery virus or two along with high exposure to DDT in my childhood, all of which have been theorized at some point or other to have a causal connection to fibro. I personally think that it is some sort of neurological pain perception overload. My GP’s suggestion recently to take gabapentin, a drug used to treat neuropathic pain, does seem to calm things down so that I wake up more refreshed.

Oh, and HariSeldon, it is my understanding also that steroids do not have any impact on fibromyalgia. I agree with the other poster that a course of prednisone is used to check for polymyalgia rheumatica since that was used as a diagnostic test for me.

57

Ah, but that’s the thing - I do have many symptoms of RA, which is why the rheumatologist before the one I go to now thought I have it, and the current one isn’t sure. The problem is, I don’t have the defining symptom, which is the twisted damaged joints. Many diseases are like this - patient has some or most of the symptoms, but not all so the doctor makes an educated guess to see how the patient responds to treatment.

I am quite sure there are people claiming to have fibro who have not had it diagnosed by a doctor, but the important thing to remember is the pain that those who have a real diagnosis are feeling is not “day-to-day pains”, and that depression and sleep problems are very frequent side affects of chronic pain. Also, those with chronic pain tend to not exercise - not only does it hurt at the time, it hurts for hours or days afterward and/or leads to fatigue. This is a constant battle for me, as I don’t want to be fat, sloppy and inert, but anything that qualifies as exercise results in long term negative affects.

58

This may be unnecessary, but I feel compelled to make the following statement:

My belief is that fibromyalgia is not a distinct disease and that it is likely that most people with fibromyalgia, though having very real and sometimes debilitating symptoms, are actually suffering from a) the effects of other illnesses (e.g. undiagnosed hypothyroidism, PMR, or possibly even a smoldering more classical rheumatologic disease like rheumatoid or SLE) or b) the effects of “wear and tear” but with less tolerance for the associated symptoms than most people, or c) the effects of various “lifestyle” choices (e.g. lack of exercise or sleep, diet indiscretions, etc.), or d) depression or another “primary” psychological disorder.

BUT, I really do have an open mind and am more than willing to have it changed if/when research is done that demonstrates something along the lines of fibromyalgia-specific changes in the brain (or elsewhere), and/or a clearer and testable model of its pathogenesis, and/or a treatment that’s at least relatively specific for fibromyalgia etc.

I have no agenda, am not dismissive, and will say again that I have no doubt that the symptoms of people diagnosed with fibromyalgia are real. Where I disagree with some others around here is in what those symptoms are due to.

59

Buuuuuut … PMR and RA have inflammatory markers whereas by “definition” a fibromyalgia diagnosis would not include an elevated SED rate or positive ANA. I get where you are coming from though.

I also get what you mean about people wanting a “label” buuuuuuut … wouldn’t any one with a problem want to define it in order to try to solve it? I imagine you have seen patients who were happier once they found out what was wrong with them even though there was no treatment. And I am also aware that some people don’t actually want to get better.

I admit I have no patience with people who play the fibromyalgia card. If in a conversation someone leads with some tribulation and follows it up with “I have fibromyalgia” my mental response is “and I don’t need to know that.” I wanted a diagnosis so I could find a treatment, but since there isn’t one I don’t feel a need to dwell on it. I don’t really embrace the label but I certainly don’t use it as an excuse.

So what do you make of trigger points? In my case nearly all my muscle insertions are screamingly sensitive to pressure. Believe me, I’ve questioned whether I’m really supposed to hurt this much. Is it possible that this syndrome is just a nervous system oversensitivity which would explain why measurable factors are hard to determine?

60

This seems to imply that people with diagnosed with depression don’t have a real disease, as that seems to be fibromyalgia without the pain (usually).