Part 2

What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease
By R. Paul St. Amand, M.D., Claudia Craig Marek, M.A.

(Page 3 of 4)

“Rheumatism with painful hard places” which can be felt in various locations on the body is considered the first description of fibromyalgia in modern medical texts, by a doctor named Froriep in 1843. Sir William Gowers of University College Hospital in London, who began by studying his own lumbago, initially dubbed this disease “fibrositis” in 1904. Dr. Gowers observed that his patients were also exhausted and that the disease was “so painful it would make a strong man cry out.” He tried everything he could think of in an attempt to relieve this pain, including injecting cocaine into the tender points (it didn't work very well) and having patients take a newly discovered drug called aspirin that, he observed, didn't work very well either. “Fibromyalgia,” a Greek word meaning pain in the muscles, has now all but erased fibrositis and rheumatism as the name of this disease.

On New Year's Day 1993, fibromyalgia was officially declared a syndrome by the World Health Organization (WHO) in the Copenhagen Declaration. It was declared the most common cause of widespread chronic muscle pain. As a new entry in the ICD code (International Statistical Classification of Diseases and Related Health Problems) it became an official diagnosis that, among other things, a doctor could use to bill insurance companies and to label a patient disabled. The WHO decided to incorporate into the definition of the disease the American College of Rheumatology's 1990 definition penned by Drs. Muhammed Yunus, Hugh Smythe, and Frederick Wolfe. This had carefully detailed the location of eighteen tender points symmetrically located around the human body. The presence of at least eleven out of eighteen of these was considered the gold standard for diagnosis, along with muscle pain.

But the World Health Organization went a little farther. The Copenhagen Declaration added: “Fibromyalgia is part of a wider syndrome encompassing headaches, irritable bladder, dysmenorrhea, cold sensitivity, Reynaud's phenomenon, restless legs, atypical patterns of numbness and tingling, exercise intolerance, and complaints of weakness.” It also recognized that patients are often depressed.

Today, thousands of medical articles later, fibromyalgia is almost universally recognized as a distinct illness. Sadly, there remain a few doctors who still try to tell patients it is simply a catchall name for a collection of symptoms shared by a group of neurotic women, but luckily they are increasingly rare. Despite so many articles and so much speculation, much of fibromyalgia remains poorly understood. It is a complex and chronic disease that causes widespread pain and profound fatigue - accompanied by a range of symptoms that make simple, everyday tasks daunting, difficult, and sometimes even impossible.

Once upon a time, a lifetime ago, I was a gymnast, played in tennis leagues, golfed, played on a softball team, and panned for gold in the Colorado mountains. . . . Now I am lucky if I can walk to my mailbox - usually I have to drive. If I can make the stairs, I go down to check on the laundry situation, or go upstairs to see if the dust has carried away the entire floor.

- Gloria

Symptoms affect widely disparate parts of the body. Doctors don't always realize that tenderness in the neck area, frequent bladder infections, and brittle nails, for example, are symptoms of the same illness. Patients, often young women, look “well” and many have learned to put up a façade in the workplace or with friends. A growing number of people have now heard of fibromyalgia and know someone who has it. Lists are available that detail the multiple symptoms of the disease, but it remains a phantom illness that has few concrete findings to the casual examiner. It still lacks a laboratory test to confirm its existence, and no scans or X rays can detect it. For these reasons, fibromyalgia is often described as an “invisible disability.”

Yet a well-conducted history will unveil the chronology of the cyclic symptoms that point to a diagnosis. This is easily confirmed by the many abnormalities in muscles, tendons, and ligaments revealed by a detailed examination. Some doctors enjoy semantics and argue whether this is a syndrome or a true disease. “Disease” is exactly that: lack of ease, and fibromyalgics are certainly qualified to wear that name. Symptoms and findings that regularly appear together in a number of patients are grouped as a “syndrome.” Congratulations! Fibromyalgia is that, too.

The painful areas of tenderness are often superimposed at the sites of previous injuries or surgery, so some believe that it is caused by trauma. We believe that there are good scientific reasons why this should be, but we also believe the disease-syndrome is inherited. Since eighty-five percent of fibromyalgia patients are women, at least one gene is undoubtedly on the X chromosome. But there must be more than one gene involved, since we have seen the illness begin as early as the age of four and as late as the age of seventy-four. That spread would be impossible to explain with only one defective gene.

There is no doubt in my mind that there is a genetic predisposition to FMS. My eighty-six-year-old father has had it since my teen years. My mother recently told me when I asked about his leg pain that the doctor said years ago that there were lumps in his legs.

- M. Bush, Alabama

Although fibromyalgia is not a terminal illness, it is a demoralizing and debilitating one. The symptoms can be unbearable - so unbearable that the so-called “Suicide Doctor,” Dr. Kevorkian, has helped several fibromyalgia patients end their suffering. In 1997, one of these fibromyalgics was forty-year-old Janis Murphy. After her death, her father spoke out about his daughter's condition. “Over the years, I've seen my daughter experience intractable and unrelenting pain.” He hated losing his only child, but “there are things in this world worse than death.”

The currently accepted method for helping fibromyalgics is to recommend exercise (knowing the patient can't do it) and to employ a war chest full of chemical Band-Aids used simply to palliate the lengthening litany of symptoms. Medical professionals unwittingly promote increasing disability when they prescribe ever-stronger medications that, sooner or later, deplete energy even further and deepen the mental haze. Along with the failure of exercise programs, massage, and physiotherapy, patients accept their lot and become victims of their disease.

About the Author

R. PAUL ST. AMAND, M.D., is a graduate of Tufts University School of Medicine. He has been on the teaching staff at the Los Angeles Harbor/UCLA Hospital, Department of Endocrinology for over forty-three years. He is currently an assistant clinical professor at the UCLA School of Medicine. Dr. St. Amand discovered guaifenesins use as a treatment for fibromyalgia, and his work is cited wherever the substance is mentioned.

CLAUDIA CRAIG MAREK, M.A., is a medical researcher tutored, trained, and taught on the job as Dr. St. Amand's assistant. She has co-written medical papers with Dr. St. Amand and has counseled fibromyalgia patients on the use of guaifenesin for the past seven years. She, too, is a former fibromyalgia patient, and is a leading patient advocate.