Rheumatologists are NOT the doctors to deal with fibromyalgia

March 23, 2005

March 23, 2005

Dr John Luetkemeyer

The recent Rheumanation about fibromyalgia (FM), written by Dr David Pisetsky (Duke University, Durham, NC), has stimulated quite a response from www.jointandbone.org readers, with some agreeing but others disagreeing with how the condition fits into rheumatology. Here, Dr John Luetkemeyer, who runs a rheumatology practice in Pensacola, FL, puts forward his argument for why fibromyalgia patients should be directed elsewhere. He believes that the expertise of the rheumatologist is needed for diagnosis—and to exclude other, more sinister possibilities—but is not needed for treatment, such as it is.

In his article, Dr Pisetsky asks the question whether the thought of treating fibromyalgia patients scared "Karen" away from seeking a rheumatology fellowship at Duke University. I don't think it does anymore than irritable bowel syndrome scares residents from pursuing a career in gastroenterology. Every specialty has its Achilles' heel as it relates to "diagnoses" not supported by evidence-based medicine. In my opinion, it is time for rheumatologists to relinquish the responsibility of treating fibromyalgia patients.

A fibromyalgia patient referred to me is evaluated on a one-time basis to document the validity of the "label," and further follow-up is deferred to the primary-care physician. My desire to enter rheumatology was directly related to my interest in rheumatoid arthritis and the other inflammatory arthritides—not chronic pain secondary to the hypothesized altered processing of pain heavily influenced by psychosocial problems evident in the vast majority of these patients.

I do believe there are patients who have widespread musculoskeletal pain attributed to a syndrome we call fibromyalgia. However, I do not believe rheumatologists should be the "main caregivers for these patients," as Pisetsky and others have suggested. We simply treat these patients by default. The main reason for my stance is the lack of any creditable evidence supporting fibromyalgia as a rheumatologic condition other than the existence of chronic pain. Although rheumatic diseases are often associated with chronic pain, the converse is not necessarily true. With the burgeoning entrepreneurial specialty masquerading as "pain management," my opinion is that these patients would be best served by those who claim to be pain specialists—if only we could get them to put their needles down long enough to actually treat the pain and the patient.

Until that happens, we, as rheumatologists, will continue to be conveniently viewed as "experts" in treating chronic pain rather than treating the diseases that excited us during our training: rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, reactive arthritis, vasculitis, lupus, scleroderma, myositis, and gout. These are the reasons I went into rheumatology. The manifestations of rheumatic diseases extend across all major specialties and subspecialties. We, as rheumatologists, are often asked to see the "difficult" patient to rule out autoimmune disease, vasculitis, or connective-tissue disease—we are the "specialty internists" of internal medicine.

The problem may lie with physician training and the lack of exposure of medical students and all types of residents to rheumatology. Musculoskeletal diseases span all the major specialties, and future physicians need formal (not elective) exposure to rheumatology, regardless of their chosen final path. We rheumatologists are receiving ever-increasing requests from physicians (both medical and surgical) to rule out fibromyalgia and "conditions" such as connective tissue disease, undifferentiated connective tissue disease, or autoimmune disease, prompted often by unexplained complaints of pain or poor postoperative wound healing. Rheumatologists may be trained in the differential diagnosis of pain but, unfortunately, we are becoming the house officers for poorly trained primary-care physicians, and we are too often being asked to "separate the wheat from the chaff."

Abysmal track record of treatment

Fibromyalgia has an abysmal track record of treatment, and several hypotheses have fallen by the wayside. Low pain thresholds, poor sleep patterns, abnormal levels of homocysteine or substance P, etc, make for interesting discussions at Lunch with the Professor sessions, but there is little practical advice about treatment. Abnormal central processing of pain in fibromyalgia is now the topic du jour. Studies describing the electron microscopic findings (or lack thereof) on the biopsies of tender points in patients with fibromyalgia and the search for peripheral etiologies have now given way to a focus on the central nervous system's processing of pain. Perhaps we are getting closer to finding out that fibromyalgia really is "in the head," one way or another.

Please understand, I mean no disrespect for the contributions of the many rheumatologists who seek to gain a better understanding of fibromyalgia. My intent is not to criticize but only to emphasize the lack of evidence-based medicine supporting the treatment of fibromyalgia. After all, if it were not for these physicians, who else would seek to "invoke the scientific spirit of inquiry in us all"? However, over the years, I have noticed a change in the opinion of eminent rheumatologists regarding posttraumatic fibromyalgia and the concern that labeling patients with fibromyalgia potentially encourages them to "grow into" the label and remain unwell. Several years ago at a conference I attended, Dr Nortin Hadler (University of North Carolina, Chapel Hill) described fibromyalgia as SOOS (Syndrome Of Out of Sorts), and I believe this cannot be totally ignored in many of these patients, and no amount of medication will change their life-associated stresses.

Many recent articles point to the successful treatment of fibromyalgia utilizing nonmedicinal therapies such as behavioral modification, biofeedback, tai chi, Pilates exercises, and aerobic activities, with the latter being the most successful. When medicinal therapy is recommended, it generally falls into the category of antidepressants and/or muscle relaxants. None of these therapeutic approaches requires the expertise of a rheumatologist. But also, there is a documented lack of success. For instance, Dr Frederick Wolfe (University of Kansas, Wichita) and colleagues found a lack of significant improvement in patients after 7 years of conventional treatment [ 1 ]. This failure on the part of the physician OR patient cannot be ignored.

Some authors have suggested the primary-care physician may be best suited to provide care to fibromyalgia patients. The bigger problem will be trying to sell this treatment protocol to primary-care physicians (internists and family practitioners), who are becoming ever more dependent on physician assistants, nurse practitioners, and other physician extenders to provide the services for which they often bill under their provider number without seeing, touching, or talking to the patient. Fibromyalgia patients are too often avoided and subsequently referred to rheumatologists, since the time needed to spend educating them about their condition is not cost-effective in an environment of diminishing reimbursements, increasing overhead, and bureaucratic demands. Also, the US medicolegal system rewards patients for the ubiquitous diagnosis of "posttraumatic" fibromyalgia, despite the fact that no creditable evidence exists to support such claims. All of these developments have resulted in increased referrals of fibromyalgia patients to rheumatologists, to the point where the condition may constitute as much as one third of a rheumatologist's practice.

Time to relinquish responsibilities for FM?

After 25 years in rheumatology, I do not agree with the comment that fibromyalgia "remains a rheumatologic condition." I find rheumatology to be an exciting and rewarding specialty treating patients with real disease. Never before has it been more satisfying treating a patient with rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis with the recent therapeutic advances. We are now challenged to find the same therapeutic advances and satisfaction in the treatment of patients with lupus, scleroderma, and osteoarthritis.

Occasionally, I have the opportunity to "teach" family-practice residents who desire to spend a month in my office. I stress to them the recent advances in treating diseases they will no doubt see in their primary-care practice. I emphasize the clinical and didactic approach to the patient, while deemphasizing the use of blood tests in search of a diagnosis. I do discuss fibromyalgia, since they will see several of these patients during their rotation with me, and later, no doubt, in their own practice. It is my policy to evaluate these very difficult patients while realizing fibromyalgia is a "diagnosis" of exclusion. If fibromyalgia is the label to be used, it is my belief that "a jog around the block or 20 laps in the pool can make a dent" in the low pain threshold and poor sleep pattern hypothesized in fibromyalgia. I also stress the importance of patients being responsible for their therapy (exercise, stress reduction) and not to rely on my prescription pad. Quite frankly, fibromyalgia patients do not excite me and I elect to "weed" them out of my practice unless they are willing to do the things that might be successful in improving their quality of life. Needless to say, my success rate is no different than Dr Wolfe's experience. After all, aerobic exercise does not come in a capsule or scored tablet!

As a rheumatologist, I pride myself in the didactic nature of our specialty and the recent advances utilizing monoclonal antibodies and receptor antagonists. I am more excited than ever to treat the musculoskeletal diseases for which I was trained! It is time to relinquish the fibromyalgia patient to our colleagues who are better trained to treat them . . . the clinical psychologist, the pain-management specialist, the primary-care physician or, perhaps, tertiary care centers conducting clinical trials. Fibromyalgia is not an autoimmune disease and I, as a rheumatologist, have no interest in this pain syndrome.

Our patients are our biggest advocates

The recent advances made in the treatment of inflammatory arthritis are enough to excite some residents, and I find those who rotate with me are eager to learn about topics never discussed in their training. When I have residents rotating with me, I deemphasize the impact of fibromyalgia on my practice and emphasize the need to recognize rheumatic diseases and, especially, clinical conditions that may mimic rheumatic diseases. For example, I discuss the patient referred to me for shoulder pain, which turned out to be a Pancoast's tumor suspected simply by physical exam and confirmed that day by chest x-ray. Or the polymyositis patient extensively evaluated by a gastroenterologist for liver disease because of a finding of elevated aspartate transaminase (AST) and alanine aminotransferase (ALT) levels, simply because no physical exam was performed on a patient who initially complained about her inability to lift her right leg.

One of the more intriguing things brought to my attention during my contract negotiations with the local managed-care organizations and third-party payers was the importance of rheumatologists to patient care, which is probably unknown in most academic institutions. I learned there are 3 types of medical specialties with the highest patient loyalty, and managed-care plans and insurance carriers are aware of this little-known fact. Those 3 medical specialties with the highest patient loyalty are gynecology, pediatrics, and rheumatology. Quite simply, our patients are our biggest advocates. I find this to be an exciting reason to be a rheumatologist. We do things fewer and fewer physicians are doing today. We listen to and touch the patient, physically and emotionally.

So, to go back to Dr Pisetsky's article and that potential fellow at Duke, I would say: "Karen, if you are listening, I can find no better reason than this to be a rheumatologist."

Vigorous disagreement

This Rheumanation has prompted quite a few responses from our readers, most of which are posted in the www.jointandbone.org email forum, but we also received this longer piece, published below, which outlines a vigorous disagreement.

Dr Murray Sokoloff (University of New Mexico School of Medicine and in private practice in Santa Fe) writes:

I found many of Dr Luetkemeyer's remarks and opinions quite disturbing and even offensive. He certainly does not speak for me. I could have accepted his views more easily if I felt that he were speaking only about his particular style of practice, which was certainly not the case. We still live in a relatively free country, and he can pick and choose his patients as he wishes. I wholeheartedly agree that Dr Luetkemeyer and the community in which he practices would be far better off if he avoided fibromyalgia patients if at all possible, and he probably would serve his community best if he would hang a sign on his front door saying "FIBROMYALGIA PATIENTS NEED NOT ENTER THESE DOORS." His statement that fibromyalgia is a diagnosis of exclusion sounds as if he has not learned much from these patients. As someone who probably has seen hundreds, if not thousands, of these patients, as I have, he should know that the diagnosis can most often be made by a simple complete history and physical. I have been recognizing these unfortunate people since 1982, and I have learned to make the diagnosis proactively, not retrospectively, in the great majority of patients. Of course I obtain the usual lab tests to confirm my impression.

During my fellowship at UCLA in rheumatology (ending in 1970), I was up to my ears in vasculitis, myositis, lupus, and other exotic conditions. Early in my private practice, however, I saw respiratory infections, GI bleeding, liver disease, heart disease, hypertension, and the occasional rheumatology patient. I was grateful to be busy and to put food on the table. As the rheumatology practice grew—albeit slowly—there was a segment of patients with pain (approximately 20%) whom I could not diagnose despite an extensive workup. Imagine my glee when Dr Hugh Smyth around 1982 published a wonderful paper on fibrositis that helped me enormously to fill in those diagnostic gaps.

These are suffering human beings who need help. Is someone suffering from fibromyalgia any less noble and deserving of our care than someone suffering from rheumatoid arthritis? Of course it is far, far easier to help the rheumatoid than it is the fibromyalgia patient. Maybe we have gotten a
little spoiled with all the wonderful drugs that are available to us. When I began in 1970, we had the following for rheumatoid arthritis: gold salts, hydroxychloroquine (Plaquenil), cyclophosphamide, azathioprine, aspirin, indomethacin, and prednisone. Prednisone had a terrible reputation due to the overuse of corticosteroids in the community. I was happy and of course challenged to have new rheumatoid patients in my practice. Twelve years later, when methotrexate was found to be effective, I was ecstatic. Fibromyalgia early on was no more challenging than many of the other diseases that I treated.

Of course, with the advent of so many wonderful agents for rheumatoid arthritis, treating this disease has become a "piece of cake" in comparison with everything else, especially fibromyalgia.

Who else can manage fibromyalgia better than a dedicated and caring rheumatologist? We are the best diagnosticians, bar none. We are better at using drugs than anybody else, even with our hands tied behind our backs. Managing a fibromyalgia patient is like having one's hands tied behind one's back. Furthermore, drugs don't work very well in these patients, and just telling a patient that they must exercise also does not work. As I write this, I realize that in some respects managing a fibromyalgia patient now is somewhat akin to what is was like managing a rheumatoid 35 years ago when I started practice. Maybe that is why I am not resentful in having to take care of these patients.

It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.

On the other hand, I found Dr Pisetsky's remarks in the earlier Rheumanation quite inspiring, and I certainly identified with his discomfort when facing the medical resident, Karen. I, too, have been apologetic at times when too many of my teaching cases happen to have fibromyalgia and not some exotic autoimmune disease. I believe strongly that rheumatologists who do not want to manage or feel uncomfortable managing fibromyalgia should not feel compelled to do so, especially if there is someone else in their community able to do the job well. The interest and enthusiasm of the managing physician may be as important as the strictly clinical aspects, and the latter can be learned with experience. In my geographic practice area I am not aware of any provider with the requisite clinical skills and interest in this illness. I have become the de facto expert in northern New Mexico. About 20% to 25% of my new patients have fibromyalgia as a primary or secondary diagnosis, while 10% to 15% of my follow-ups have the illness. The attrition rate is fairly high, because once patients realize that I do not have any magic in my black bag many opt not to return. It is vital to take the illness seriously and keep trying to make a difference. I have learned to lower my expectations for improvement, and that helps a lot. Most patients come to realize that there is not a magic pill or other treatment available at this time and that there is nothing very exciting on the horizon. Some will adjust their lives accordingly, and some of these adjustments are quite positive. If I can help relieve some suffering and end the relentless quest for a cure, then I have done my job and I am satisfied.

My very direct remarks reflect long-held feelings and prejudices that I am compelled to express. Our collegiality will no doubt survive this onslaught in the long run.

 

Source
  1. Wolfe F, Anderson J, Harkness D, Bennett RM, et al. Health status and disease severity in fibromyalgia: results of a six-center longitudinal study. Arthritis Rheum 1997; 40:1571-1579.

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