Fibromyalgia and Similar Problems

Minnesota Physician Volume 13, No. 3, June 1999
Treatment Overload - Sometimes less is more
by Brian W. Nelson, MD, Medical Director, Physicians Neck & Back Clinics and Alison J. Coulter, MD, Physicians Neck & Back Clinics

Jean-Martin Charcot was a famous Parisian neurologist/internist who practiced in the late 1800's. He and William Osler were the two most famous physicians of their time and their views carried tremendous weight.

By 1879 Charcot had developed a comprehensive theory to explain hysterical paralysis, a disease he described as an inherited functional disorder manifested by hemianesthesia, constricted visual fields (sometimes blindness), headaches, and periods of complete paralysis alternating with epileptic fits. According to Charcot, the ovaries (the disease was almost exclusive to females) were likely responsible for the malady because he discovered that by pressing on the abdomen over the ovaries he could relieve the symptoms. By this definition the disease was organic rather than psychiatric thus filling a need to "know" in patients and physicians alike. Charcot enjoyed great fame and celebrity for breaking the code and literally thousands of French women developed and were treated for the disease.

Charcot died in 1893 and a funny thing happened. Charcot's Hysteria completely disappeared as a disease. Twenty years after his death not a single case of hysteria could be found in any of the Paris hospitals.

Science or pseudoscience?

Frederick Parkes Weber was a well-known London internist who practiced at the beginning of the century. Because his medical records were well preserved we can see in detail the types of problems he was treating. It turns out a good many people were seen for complaints of fatigue, generalized pain, GI disturbances etc. and Parkes Weber, being a conscientious fellow, dutifully searched for an organic cause. Only towards the end of his career in the early 40's did he begin to believe many of the symptoms were psychogenic. He often complained about patients' relatives he called "Gawdsakers" as in, "For God's sake doctor, cannot something be done to relieve the patients?"

Before we all spill our coffee laughing at Old World stupidity, we ought to examine our own practices.

In the latter half of the 20th century the discovery of the Epstein-Barr virus (the cause of mononucleosis) seemingly validated a new disease consisting of fatigue, restlessness, achy muscles and joints, intermittent sharp pains, etc. That is until someone pointed out that the majority of people have EBV antibodies in their blood but have no symptoms. Oops.

In 1988 the Centers for Disease Control, realizing there was a poor correlation between those with antibodies and those with symptoms renamed the disease Chronic
Fatigue Syndrome (CFS). Interestingly, patient support groups didn't take kindly to this kind of science and proceeded to rechristen their disease as Chronic Fatigue Immune Dysfunction syndrome (CFIDS) thus staying one step ahead of the posse in their desire to identify an organic cause.

In 1968 Eugene Traut, a Chicago internist, published "Fibrositis" in The American Journal of Geriatrics delineating a pattern of symptoms and tying them to a distinct clinical entity. But in 1981, biopsy studies inconveniently showed no inflammation so rather than eliminate the disease it was renamed fibromyalgia. New support groups soon followed.

Modern Hypochondria?

Patients today seem hyper sensitive to their bodily sensations, seeking care for the most vague of symptoms. A random survey of the American public asked how many episodes of "illness" they had experienced over the previous year. Those polled in the years 1928-1931 reported 82 episodes per 100 population. By 1981 the number had increased to 212, a 158% increase even in the face of dramatic improvements in healthcare. A University of Alabama study has shown that psychiatric symptoms and lifelong psychiatric diagnosis were associated with being followed up in the rheumatology clinic for fibromyalgia.

What is going on? The straw the stirred the drink, helping to reach critical mass, was mass media coverage of health topics. For example, in 1987 Rolling Stone published a widely read story entitled, "Journey Into Fear: The Growing Nightmare of Epstein-Barr Virus." The story was very critical of doctors who pointed out the scientific contradictions, suggesting physicians who didn't buy into the frenzy were uncaring and not deserving of patronage.

A story sympathetic to fibromyalgia in The New York Times in 1989 was a virtual roadmap explaining to patients what symptoms they needed to have. In the 90's programs such as "Dateline", "20/20", and "48 Hours" further spread the word.

Every day, physicians seem to give more support to unproven diseases and treatments. For example, consider a few of the treatments currently recommended when the symptoms involve the axial skeleton: ultrasound, TENS, myofascial release, craniosacral adjustment, chiropractic, electrical stimulation acupuncture, acupressure, trigger point injection (steroids), trigger point injection (porcine colostrum), epidural injections, stretching, McKenzie exercise, stabilization training, Vax-D (super traction), biofeedback, rolfing, massage, iontophoresis, spray and stretch, hot or cold packs, pool therapy, and Chinese herbal therapy. None of these have solid scientific support.

Multiple costs

As our tools to search for a diagnosis expand along with our treatment options it gets expensive. Are we getting our money's worth? A female patient seen at our clinic a few years ago with vague low back pain was told she had something called "Levator Ani Syndrome" and received a series of injections into the offending anatomy (anus). Ouch. When that didn't work the diagnosis changed to coccydynia, then piriformis syndrome and finally to, "Sorry, I don't have a clue, here's your referral to a pain clinic."

There are other illnesses with similarities to fibromyalgia. As a group they have been referred to as "fashionable illnesses." The characteristics include vague and subjective complaints without objective physical or laboratory findings and quasi-scientific explanations. The patients often have symptoms and/or a history of depression or anxiety. They will usually deny the presence of psycho-social stress and often become angry if someone suggests it. There is often a history of childhood trauma, abuse or ongoing domestic abuse. Examples of other fashionable illnesses include what Freud referred to as neurasthenia. He described these individuals as lacking lust for life. In modern jargon, their cup is always half-empty. Dysautonomia, myofascial pain syndrome, chronic pain syndrome, chronic EBV, CFS, irritable bowel syndrome, reactive hypoglycemia, systemic candidiasis, repetitive strain syndrome, sick building syndrome, and multiple chemical sensitivities are all examples of fashionable illnesses. Doctors have many words to describe these patients such as the worried-well, thick-chart patients, hypochondriacs, histrionics, gomers, and crocks. The British call them "heart-sink" patients because that's what happens to the doctor's heart when the patient's name is seen on the schedule.

To be sure, there are known medical disorders that can cause diffuse muscle aches and fatigue. The differential diagnosis includes diabetes, collagen vascular disease, hypothyroidism, electrolyte imbalance, inflammatory myopathies, multiple sclerosis, neuropathy, polymyalgia rheumatica, and seronegative spondyloarthropathy. Most of these disorders can be ruled out with a thorough history, physical exam and a few lab studies. A blood sugar, urinalysis, electrolytes, and TSH are probably sufficient in most cases. Obtaining a sed rate may also be included if indicated (especially in the elderly), but think in advance how an elevated value would influence the management. If the evaluation is negative and in your best medical opinion, no disease is present, reassurance and activity is the appropriate treatment.

Preventing surgery

The psychological aspects of disease should not be underestimated. Research we published in January's Archives of Physical Medicine and Rehabilitation demonstrates the point. Our prospective study documented the effects of aggressive exercise in patients who had been recommended for spinal surgery. After an average 16 month follow-up 35 of 38 had been able to avoid the surgery. The most important part of the treatment may have bee the patients were given to be active even in the face of pain. Patients who very much wanted to avoid surgery had the best chance of doing so.

Labeling a patient with a disease such as fibromyalgia, on balance, may do more harm than good. Who among the physician readers has not seen a patient so immersed in the minutiae of the disease that he/she was virtually trapped in the sick role? How much good are we really doing for patients?

The recent Billy Crystal movie, Analyze This, contained a scene that was especially funny and meaningful to me. He plays a psychiatrist, his life filled listening all day to other people's problems. As one patient drones on about all that's wrong with her life, Billy Crystal's fantasy plays out on the big screen. He leaps out of his chair and screams at the top of his lungs, "Get a _______ing life you worthless ________."

Maybe he had the wrong delivery, but if more patients spent less time on seeking a diagnosis and experimenting with unproven cures for unproven diseases, they would be out exercising, relating, living life.

Reasonable physicians may disagree on solutions. But whenever they are tempted to label a patient with a disease that is not conclusively proven, step back and weight the pros and cons. Remember, first do no harm.