What is the straight dope on fibromyalgia?

This is a strange disease. My girlfriend has it. There doesn’t seem to be any definitive cause or any standardized treatment. Is this simply a disease that requires more research? Does a disease like this show how little we know about the human body?

It’s either a real disease, possibly with multiple underlying pathogenic mechanisms, or it’s the physical manifestation of a primarily “psychiatric” disorder. I put “psychiatric” in quotes b/c at some level everything–even “purely” psychiatric disorders–has some sort of chemical/physiologic underlying mechanism.

No one knows. There is no good marker for fibromyalgia; only a set of guidelines on what criteria should be met in order to diagnose it. Like any poorly understood illness which does not have laboratory-based criteria, it’s also over-used as a “wastebasket” category into which a physician can put a wide variety of patients.

It’s amazing how many patients want a label, and to a large extent fibromyalgia is a label. I’ve told patients they have some sort of itchy rash, cause unknown, only to have them return triumphantly with a Mayo-clinic Impression of Idiopathic Pruritis.

No-one here, or anywhere else, will be able to give you a decent answer. If she were my relative, I’d say find a physician you trust and have her gut it out without getting too obsessed. Stay away from deciding it’s all about Candida, or a late reaction to childhood vaccines, and the like.

My opinion only, and worth what it cost you.

ETA: less any costs related to the SDMB.

Not to advocate it, or to suggest in any way that **solkoe’s **girlfriend should take it or that it is appropriate for her, but the FDA has approved the drug Lyrica to manage fibromyalgia pain.

That is not the same thing as completely understanding the underlying illness (or syndrome or whatever it turns out to be).

As someone who has IBS, I can say that it was a significant step when medications came out to specifically treat that, which also was considered "either a real disease, possibly with multiple underlying pathogenic mechanisms, or … the physical manifestation of a primarily ‘psychiatric’ disorder. " IBS was also an overused “‘wastebasket’ category into which a physician can put a wide variety of patients.” It is now considered real. I can only hope that fibromyalgia has reached a similar plateau.

Isn’t this still true for *every *disease?

The etymology of the word gives a little more information:

fibr - refers to fibrous tissues of the body (muscles, nerves, tendons)

my - refers specifically to muscle tissue

al - refers to pain

gia - is a condition of

So, etymologically speaking, fibromyalgia is a condition of pain in the muscles and other fibrous tissues.

The problem is, as the others have mentions, that there is no definitive diagnostic test to determine if a person has fibromyalgia. You can’t find it in a blood sample, an X-ray, an MRI, a urine sample, a stress test, or a physical examination.

What you see are a group of symptoms that are, well, a little on the vague side. Muscular pain, tenderness to touch, some digestive sensitivities and upset. None of that sounds really bad, but those with fibromyalgia describe it as being constant and overwhelming.

I find it interesting that the commericals say that Lyrica “isn’t an anti-depressant.” That’s true. If you investigate you find out that it’s instead an anti-anxiety drug. I know there’s stigma around the opinion “it’s all in your head” but the commerical seems deliberately misleading to me given it’s still a drug for mental health issues.

At least they are not coming back with goofy articles on “Morgollon’s Syndrome” and matchboxes full of lint, er, parasites.

The Lyrica issue is a sensitive one because, yes, lots of people (clinical and lay) have suspected that various nebulous “diseases” may be more than partly a result of mental or emotional stress.

I mention, and then delicately tiptoe away from, the classical notion of hysteria, in view of the fact that many “diseases” or “syndromes” that were or are difficult to objectively diagnose, characterize, or substantiate, are found or reported or claimed much more frequently in women than in men: TMJ, fibromyalgia, Morgollons, IBS, “restless leg syndrome.”

Lyrica is also used to treat neuropathic pain (that is, actual pain caused by the nerves, rather than psychosomatic pain coming from the “nerves”). It’s not just used a psychiatric drug.

Personally I have seen a fair number of patients who have the cluster of Fibromyalgia/Depression/IBS/chronic low back pain/Anxiety/chronic pelvic pain/Benzodiazepine dependence.
Some of these people undoubtedly have more psycho-social issues than physical pathology.

For some of my patients, unfortunately, Fibromyalgia is also a convenient label for the purposes of incapacity benefit and disability living allowance. Certainly it is diagnosed mostly in my patients from lower socio-economic groups.

I won’t, however go as far a one rheumatologist I know, who says that “if you still like the person by the end of the consultation, then they don’t have fibromyalgia”. He’s a fan of the “suck it up, Nancy, come back when you really have something to cry about” school of mental health problem resolution.

I would suggest you look for some sites online that are dedicated to fibro. I know there are still lots of doctors who don’t believe it is an actual disease/syndrome or just consider it a wastebasket condition. However there has been a lot of research done and there are methods of diagnosing and there are actual links to certain problems. In my personal opinion, I am not a doctor - I am a sufferer, I think it’s as yet unclassified autoimmune disorder since it shares so many symptoms with them and is often diagnosed along with other autoimmune disorders.

I did a lot of research online and in books when I was “tentatively” diagnosed several years ago. I say tentatively because that’s what the rheumatologist said. There is a diagnostic test of sorts related to checking to see if a patient has a majority of trigger points, my rheumy said I had most but not all, I don’t think he was up to date because you do not need to have all of them for a diagnosis.

Of course I hate the “it’s all in your head” label because the last thing I wanted was to be incapacitated half the time. When I first started having symptoms my stress level was pretty low compared to the past several years. I have been stressed over various things for the past several years but there have been times when my stress level was a little less and I still had flares and times when I was stressed to capacity and didn’t have flares. I’ve actually done pretty well for the past few years but I did cut out some work related stress and changed my diet, however I always have some degree of joint pain somewhere in my body and I still have occasional all over flares that are usually related to difficulty sleeping. If you research this you’ll find that sleep is a major factor in fibro.

Here is a good site to start, I have one of her books and I found it very informative and it doesn’t treat the fibro sufferer like it’s all in their head. If your girlfriend doesn’t already belong to an online community for fibro sufferers it might be helpful for her to join one, it actually helps to hear that other people are going through the same thing.

The skepticism of mainline physicians arises from the practical observation that most patients who end up with a diagnosis of fibromyalgia are also pretty far out there on the nutty scale. (Again my baseline reminder that even nuttiness has some ultimate biologic pathophysiology; I’m just putting psychiatric v physical in their ordinary buckets.)

The argument eventually deteriorates into whether the nuttiness is the result of having a disease process the pathophysiology for which has never been defined, or whether the patient is baseline nutty with a set of physical manifestations as the expression of the nuttiness.

Since the only pharmacologic interventions that have had clinical efficacy are in the family of medicines that affect primarily the brain and not the peripheral manifestations of the disorder, there is an understandable bias toward “nutty first; fibromyalgia second.”

Nevertheless, most fibromyalgia “sufferers”–(another red flag for clinicians) may indeed be proved right some day and give mainline medicine its comeuppance when a more standard pathophysiology is proved.

In the interim, fortunately, the free market will provide plenty of sympathetic ears and earnest practitioners eager to advance their particular therapeutic approach, so there are places to turn even if it isn’t the rheumatologist who just wants a fibromylagia sufferer to get a grip and walk it off.

From a recent N.Y. Times article on fibromyalgia and FDA approval of the drug Lyrica to treat it:

*…(Some) doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them…Advocacy groups and doctors who treat fibromyalgia estimate that 2 to 4 percent of adult Americans, as many as 10 million people, suffer from the disorder.

Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.*

An FDA panel initially nixed Lyrica because of the side effects; it has since been approved. And two more drug companies are expected to have their drugs for fibromyalgia approved soon.

Look for big-time TV and magazine marketing of these drugs.

For more on pregabalin (Lyrica), see the prescribing info from Pfizer: http://www.pfizer.com/files/products/uspi_lyrica.pdf

You might want to look at the F1 study cited–scroll down to about page 38 and look at the Figure 8 to help decide how much better pregabalin is than placebo…and this study excluded all the people who got better in week one with the placebo.

The second study cited there looks at how long it took pregabalin to stop working.

Yeah, but same as MRIs weren’t available a few decades ago and are now used for, among other things, check for MS, enough research will at some point come up with a test for fibromyalgia.

Even if it happens to be “stress-triggered,” it’s got a different mechanism from other stress-triggered things, different chemistry involved.

As Chief Pedant said, like “the grippe” and “the rheumatiz’” of bygone days, fibromyalgia is a label hung on a condition, not in itself a specific disease.

Barb exhibited all but one of the marker for fibromyalgia (except that, while sometimes pleasantly dotty, she was not particularly nutty (other than the IMO-fully-acceptable lifelong commitment to me! :)). In her case, an astute rheumatologist and a competent endocrinologist suspected and documented that the symptoms were caused by a borderline case of pernicious anemia – she was far below normal levels of “intrinsic factor”, the covitamin that enables B-12 assimilation. B-12 shots for some years and moving to a less stressful lifestyle combined with minor dietary modifications successfully treated and eliminated the problem, apparently permanently.

I deal with disability claims based on fibromyalgia on a regular basis. To the extent that it might be a legitimate physiological impairment, it’s legitimacy is undermined by sloppy diagnosing. For crying out loud, at least count up the trigger points. Instead it is generally used as a description for generalized pain with no clear cause. My favorite is when they diagnose fibromyalgia with somatic overlay. Well - is it physiological or mental?

I’ve often discussed with colleagues changing trends in the medical field over tme to attribute nonspecific complaints to either physical or emotional causes. At one time, people with fibromyalgia would have been diagnosed with hysteria. Or psychogenic pain disorder.

These nonspecific impairments seem to come and go as well. Not too long ago I saw a lot of cases alleging environmental sensitivity syndrome. They are nowhere near as common today.

The bottomline is fibromyalgia is only rarely considered to be disabling, and the most effective treatment generally included increased activity.

At one point I had at least one doctor try to tell me I had fibromyalgia. I felt at the time that was not correct, and brushed the suggestion off.

Some years later, I was definitely diagnosed with Ankylosing Spondylitis, an autoimmune seronegative arthritis.

I’ve talked to my rheumatologist about this experience, and apparently there is some feeling in the rheumatology community that at least a small percentage of fibro cases are actually early AS, which is notoriously difficult to diagnose and shares pretty much the same symptom set as fibromyalgia. AS can be active for ten years before the diagnostic X-ray changes start showing up and it’s not really detectable on bloodwork. Add to that that women with AS have a different set of symptoms than men do, with less spinal involvement and more peripheral joint and tendon involvement.

I don’t doubt that there IS something that is fibromyalgia. But I also don’t doubt that it’s sloppily used as a diagnosis and that many folks who are told they have it actually have something else.

Saying that you suffer from a particular disease is a red flag? So if someone says they suffer from diabetes or high blood pressure then it’s probably all in their head? Using that term is commonplace for a multitude of diseases and conditions.
I was actually going to use the term Fibromite as many people with fibro call themselves but I didn’t think most people would understand it, but saying “particular disease sufferer” people do understand.

Am I correct in my understanding that fibromyalgia is a diagnosis of exclusion, which is to say, “We’ve tested you for everything we can test you for, and it ain’t that: let’s call it fibromyalgia.”

Not exactly. There is a specific criterion for the number of pain points . In practice they aren’t always formally counted up especially if the patient has a number of other complaints considered to be in the constellation: http://www.fmnetnews.com/basics-criteria.php , e.g.

However it is true that numerous other possible causes for fatigue and pain need to be excluded, and in general, every objective test (labs, scans, nerve studies…etc.) currently available needs to be normal. That’s the sense in which it’s a “wastebasket” diagnosis (medicalese for a diagnosis which is not something else)–a diagnosis of exclusion. But not every undiagnosable disease state is considered to be fibromyalgia. There are many many poorly understood diseases with specific manifestations.

Saying one suffers from a poorly defined syndrome is a red flag to most clinicians, frankly. It tells the clinician that the odds of her being unable to satisfy, or even help the patient, have gone up.

Not to a certainty, to be sure. But it tends to make a satisfactory outcome more unlikely than when a patient comes in stating they suffer from diabetes, where the disease entity is quite well defined, its pathology and consequences are pretty well understood, and treatments for it and its sequellae are pretty well demonstrated to have some effectiveness.

Well…ok. But there is an element of “suffering” that’s sorta the whole deal w/ fibromyalgia and the focus on that element is what gets on the nerves of surly clinicians like me. I guess I am too partial to the observation of **irishgirl’s **Rheumatologist: “…if you still like the person by the end of the consultation, then they don’t have fibromyalgia…” Unfair, I know.

I speak here as a relatively cold clinician on the empathy scale. The stereotype for a patient with fibromyalgia is a personality profile a little closer to suffering and depression and poor sleeping and aching all over than it is for most other patients. I’ve met folks w/ terminal cancer and horrible bone pain who have gotta be hurting just as much, and they want to tell me the Joke of the Day.

It’s a sensitive subject, and I realized long ago I am the wrong doctor for fibromyalgia. So not to worry; I get people to the right place.