Read an Excerpt

What Your Doctor May Not Tell You About Fibromyalgia

Warner Books

Chapter One

Having fibromyalgia means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about (this illness) and its effects, and of those that think they know, many are actually misinformed. -J. M., Texas

It can start off quite subtly: a bit of muscle pain, along with some generalized aches and stiffness. Then there are periods when concentration is impossible, a day or two of overwhelming fatigue, and maybe a little dizziness, cramps, and diarrhea. Symptoms come and go at first, and it's easy to chalk them up to a mild case of flu that never quite localizes, to overexertion and too much stress in your life.

Then, one day, you realize it hasn't gone away-it never goes away anymore. One part or another of your body always hurts. You feel stressed and irritable all of the time. You wake up tired every morning. In short, you haven't felt "right" in a long time. The symptoms begin to worsen, and you notice new ones. Perhaps depression, numbness and tingling of the hands, leg cramps, stiffness, headaches, or bladder infections. Often you can no longer sleep through the night. Sometimes it's pain that keeps you awake; sometimes you don't know what it is that keeps you from falling asleep. When you do sleep, you wake up tired and unrefreshed. You crave sugar or other carbohydrates, and if you give in to this craving, you tend to gain weight and feel even worse. Then, before you know it, bad days outweigh the good ones, and eventually there are no good days, just ones that range from bad to worse.

It feels like coming down with the flu, yet it never manifests fully. It's like being fluish, achy and tired, and embarrassed and discouraged about it because you don't know why or what you can do to make it better or what you did to make it worse. Everyone gives advice but they don't have a clue as to what it's really like. Having people tell you to eat differently and exercise more and not focus on your health makes you just want to isolate yourself because you've already experimented with every possible food plan, supplement, and idea. -Miki K., Hawaii

You become increasingly immobile. Gradually and without realizing it at first, you stop making plans because you never know how you will feel, and you become mostly housebound or bedridden. The simple task of going to the supermarket can be an impossible chore. By now you have visited doctors of various specialties in the hope that one of them will be able to tell you what's wrong and set things right. When the pain is bad, you seek out chiropractors and massage therapists, and maybe you try acupuncture and alternative treatments like herbs or homeopathy. You have had many diagnostic tests run, costing hundreds, perhaps even thousands of dollars. Your friends have offered you a lot of advice about vitamins and nutritional supplements that have helped them or someone they know. But you are already taking a regimen of vitamins, minerals, and enzymes, and you do not feel much better. You may have heard the word "fibromyalgia," and maybe you know whether or not you have it. No one has told you how to treat your disease, although they have many ideas about how to ease your symptoms.

Your life has entered a downward spiral of pain, depression, and fatigue. You have a great deal of guilt about not being the person you used to be. Unless you are blessed with an exceptional companion, your personal relationships have suffered or completely fallen apart. You worry about your ability to care for your children. You may even contemplate suicide.

It feels like everyone around me is normal and happy and having a good time and I'm so different. I want to have a few normal days. I don't fit in anywhere because no one understands. People laugh and say "You look fine" but I'm dying inside and I can't explain it to them. I'm so tired of pretending I'm okay when I want to scream. I have kept a positive attitude for so long but it's exhausting and I just can't do it anymore. I wish I could just go away somewhere and hide. -Susie

This is an oversimplified picture of what it's like to have fibromyalgia. Those of you who have it know that it is far more involved than this. I know what you're going through. I am intimately familiar with the personal struggles that each and every one of you has experienced with this illness either as sufferers or as their supporters. I have lived with your pain, your fatigue, and your despair.

I have spent my entire medical career treating patients with symptoms such as these and more. Headaches, jaw and facial pain, abdominal discomfort, dizziness, memory lapses, vulvar and bladder pain, itching and rashes, all plague fibromyalgics. Until recently, doctors told patients like you that your illness was due to "nerves." And, to underscore this diagnosis, patients were reminded that the pages and pages of tests run on them had shown "nothing wrong."

Fibromyalgia is prevalent in all ethnic groups in all parts of the world. In North America, it is estimated that about five percent of the adult population suffers from this disease, although I believe the actual rate is higher. Conservatively then, some twenty million Americans suffer from fibromyalgia and its related disorders-most are women, with the ratio of women to men at about five to one. There is some evidence, mostly anecdotal, that this statistic may be skewed due to the fact that men are often either misdiagnosed or less likely to visit a doctor. Rheumatologists say fibromyalgia is the most common disorder they see.

Another twenty-five million people suffer from chronic fatigue syndrome, which I (and most other physicians) believe is the same disease. I have good reasons to conclude through my work that today's fibromyalgia is the prelude to tomorrow's osteoarthritis that afflicts another thirty-five million people. Adding these numbers would suggest that one third of our population will suffer with some of the symptoms of fibromyalgia at some point in their lives. And this does not include those who have been diagnosed with other "syndromes," such as myofascial pain, chronic candidiasis, vulvar pain, irritable bowel and irritable bladder, and so on-who in all probability have fibromyalgia as well.

My rheumatologist told me I was too old to have FMS. At that time I was fifty-four, never mind the fact I had had symptoms most of my life. The disease had become "full blown" when I was about fifty-one.... After another year of suffering, I diagnosed myself via the Net. My DO (Doctor of Osteopathy) sent me back to the same rheumatologist because he is the only board-certified one in our area. At that time he told me I was too old to have FMS but even if I did there was nothing that could be done.... I have since been diagnosed with FMS by three other doctors, all of whom have told me the only thing they could do was treat my symptoms. I was as good as I would ever be and would get much worse. -Betty, Texas

"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 facade 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.

To make bad matters even worse, long-term disability insurance companies have now entered the fibromyalgia fray and help to confound progress. It is to their advantage to insist that the disease and all of its variations stem from psychiatric disorders. They often have no difficulty in finding a psychiatrist who will agree. Since the vast majority of insurance policies do not cover mental disability beyond a specified time, there is a great deal of money at stake. Fibromyalgia cases have reached near epidemic proportions in the form of U.S. Social Security disability claims, workers' compensations, and accident litigation. As many as twenty-five percent of American fibromyalgia patients have received some form of disability or injury compensation. We are first to agree that the country can ill afford to swell these ranks. But we cannot turn our back on very real suffering, either.

Although there is no consensus as to the source of the disease, I postulate throughout this book, hopefully in simple enough terms, that it is caused by an abnormality in phosphate excretion. As I have already suggested, this inherited problem appears to me to be due to a genetic defect.

Continues...

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Excerpted from What Your Doctor May Not Tell You About Fibromyalgia by R. Paul St. Amand Claudia Craig Marek Copyright © 1999 by R. Paul St. Armand, M.D. and Claudia Craig Marek . Excerpted by permission.
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