Fibromyalgia’s symptoms real but be cautious in diagnosis
By Stacey Butterfield
Rheumatologist Frederick Wolfe, MD, was among the first contemporary physicians to write about fibromyalgia. In the 25 years since, he’s been pulled to the center of fibromyalgia treatment paradigms, especially regarding the involvement of pharmaceutical companies. He recently spoke with ACP Internist about where fibromyalgia came from, the best way to treat it, and how he expects this perplexing disorder to eventually disappear.
Q: How did you get started studying this condition?
A: When the modern era of fibromyalgia started, there were about four or five of us in the U.S. who wrote about it. We saw people who had certain symptoms and we tried to understand what the symptom complex was and what it meant. I don’t think we recognized what we were creating—that we were going to have a rush of people that have it. That there were going to be disability issues, there were going to be legal issues. That there were going to be societal issues, that there were going to be movements associated with it. When I first started with fibromyalgia you couldn’t get a grant to study it. You sent the grants in and people said, “It doesn’t exist. What are you talking about?”
As fibromyalgia began to be accepted, there was considerable political pressure on NIH [National Institutes of Health] to give out grants. Suddenly, people who never believed in it and thought it was crazy idea were competing for the same sort of grants. It became an academically fundable disorder. With grants, there’s publication and glory and funding. With additional scientific research, suddenly fibromyalgia became established. It became established in academia and publications, but not with community physicians. Community physicians still think that the fibromyalgia concept is a little bit crazy.
Q: Why is fibromyalgia a problem for community physicians?
A: When doctors try to evaluate fibromyalgia severity and consequences, they have a lot of problems and they don’t know what to do. “How do you feel? Are you tired? Are you having sleep problems? Are you having pain?” The patient says, “Yes, it’s terrible. I have all these things.” That’s why physicians really dislike this. It’s really deciding whether people are telling the truth. Fibromyalgia is all based on self-report. I really believe strongly in self-report. But in an illness which has such an emotional overlay, there’s no easy way to deal with severity and its consequences.
Q: Could you explain the debate over whether fibromyalgia is a disease?
A: Nobody has a good definition of what a disease really is. Everybody recognizes that the pain is real and it’s severe and it causes people problems. The question that comes up is diagnosis. To sell drugs, you have to diagnose it. To make it a legitimate disease, that you can study and get grants for, it has to be diagnosed. Insurance companies don’t want to pay for pain. They want to pay for a diagnosed disease. So there’s an enormous effort to try to legitimize it. We have to treat patients as people who need treatment. We have to give them everything we can, but does that mean that we have to believe that a set of symptoms is a disease?
Q: What’s the argument against it as a disease?
A: Fibromyalgia is a socially constructed illness. It represents a common set of symptoms that all human beings have. The people who are classified as having fibromyalgia have more of these symptoms than others do. It’s part of a continuum rather than a disease. And fibromyalgia isn’t really that different from other illnesses like chronic fatigue syndrome, or fatigue syndromes, or irritable bowel syndrome. Many people with fatigue syndromes also have much pain. If you took out the fibromyalgia tender point requirement, you’d find that the symptoms are all the same.
Fibromyalgia is all based on self-report. I really believe strongly in self-report. But in an illness which has such an emotional overlay, there’s no easy way to deal with severity and its consequences.
The argument on the other side is that there are real abnormalities. They say we can demonstrate abnormalities in fibromyalgia patients with brain-scanning methods and measure elements in the blood and changes in the immune system. All of these things are different in people with fibromyalgia, and that proves it exists. Well, it doesn’t prove it exists. All pain has to have a biological basis. If you’re schizophrenic and you’re imagining some bad things are happening, it has a biological basis.
What most fibromyalgia research has done is take this upper end of the spectrum, this 5% of the population or less who have these severe symptoms, and compare them with people who don’t have anything whatsoever wrong with them. The real comparison group should be people who have pain and these sorts of problems. We would find that there is a distribution of abnormalities. Fibromyalgia symptoms (“fibromyalgianess”) exist as a continuum in all people.
Q: How then did fibromyalgia come to exist?
A: Illnesses such as these are defined by the acceptability of certain symptoms by society. Pain and fatigue, the right doctors, the right moment in time, the right social and political climate, and chance made fibromyalgia catch on. But the symptoms had been there and been reported on for more than a century. They are universal human symptoms.
Q: When an internist sees a patient with these symptoms, what should she or he do?
A: It isn’t necessary to have a diagnosis of fibromyalgia in order to treat these universal symptoms. They’ve always existed. One can have a practical approach. For example, if you have a treatment that cures the syndrome, it doesn’t really matter what the underlying intellectual arguments are. But in a situation where you don’t and where the treatments really aren’t very effective—by the way, the treatments are relatively the same in the fatigue syndromes as they are in fibromyalgia—what one wants to do is to try to improve the patient as much as possible, and you do that often by education, by explaining what’s going on, by trying to deal with issues of anxiety and depression, and by the judicious use of medications. Very often what people with fibromyalgia need are friends, people who can talk with them. They need somebody to be there for them. What one has to do is approach fibromyalgia patients with wisdom and kindness.
Q: Why might you want to avoid diagnosing fibromyalgia in a patient?
A: What one wants to do is try to really understand what’s going on, if it’s possible. I’ve seen 17- and 18-year-old teenage girls who have been diagnosed as having fibromyalgia when in reality what they had was a terrible time in late adolescence with all sorts of stresses in their lives—school problems, things that most of us have experienced in our lives and have survived with. Giving somebody a diagnosis like that is a terrible thing to do. Not only is it terrible because it makes them think there is something wrong with them when there isn’t something wrong with them, but it also sort of marks them for life. Medical insurance is hard to get. Get into any sort of divorce or lawsuit and that sort of thing is a black mark. Nobody needs the diagnosis of fibromyalgia. Fibromyalgia diagnosis also has societal consequences and fosters medicalization.
Q: Do patients with fibromyalgia need drug treatment?
A: Sometimes. The newer drugs don’t really have any advantage over the older drugs as far as I can see. If you give them amitriptyline or you give them another drug and it works, then that’s fine. Remember, when I say it works, you don’t cure these conditions. So instead of them being 80% worse, they’re 60% worse.
The problem is that nothing really works well enough. For those of us who have done observational studies on this, we don’t really see much benefit from the drugs. You run the risk, by treating people with drugs that don’t work, of making them sick. Internists know very well that the more drugs you use the more likely there are to be adverse effects.
I’ve often seen patients who had been on all the drugs in the world. Some of them have taken 25 different drugs. If they’re still having problems, then no drug is going to really be helpful. Sometimes you need to stop and say, “Enough. What works best for you? Take that.” What one wants to do is prevent switching from doctor to doctor and drug to drug and so on.
Q: What’s going to happen in the debate over fibromyalgia?
A: There will be an end to the fibromyalgia pandemonium, much like there was an end to the Yuppie Flu. I think that it’s going to disappear as an important issue.
If you look in the literature, you find four or five articles that say, “Wait a second, the emperor has no clothes on.” There’s been a bunch of studies on family history of depression in people who have fibromyalgia. All of the studies that have looked at this, except those in the hands of very strong believers, have shown the social basis. Someday somebody’s got to stand up and say, “Wait a second, all of these drugs are very expensive and provide minimal sort of benefits.” If that happens, this will disappear as many other things have disappeared. It will be replaced by other things because that’s the way humans act.
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