Fibromyalgia - The Whole Story

"It's all in your head" or "just learn to live with it" are the two most frequently heard phrases, from the medical profession, by sufferers of Fibromyalgia Syndrome or FMS.

Most of us have an understanding, especially these days, that research in the medical field is occurring at, and coming up with results at a fast and furious pace. Most people also understand that not every doctor can, or even should, be responsible for staying abreast of every new discovery. Without a specific need or interest in a given area, a lot of what is learned never gets to the desk of most doctors. This is one explanation, then, as to how such a large number of medical professionals are still unaware of, misinformed about, or in complete denial of the existence of such a common disorder as fibromyalgia.

Far from being a new discovery, FMS symptoms were first recorded in the 18th century, and recognized as a specific set of symptoms in the 1860's. It took more than 100 years, in the late 1980's, before the official name Fibromyalgia Syndrome was designated by the American Arthritis Foundation and the national Center for Disease Control. Prior to that time, FMS was known by at least 100 different names including, fibromyositis, fibrositis, and the old-time familiar, rheumatism.

Despite the apparent familiarity with this disorder, many doctors remain reluctant to make a FMS diagnosis. Maria Shriver reported a statement by Dr. Thomas Bohr on the January 4, 2000 airing of NBC Dateline. In this report, a neurologist at Loma Linda Medical Center in California, Dr. Bohr stated, "..there is a portion of the medical establishment that contends fibromyalgia is not just over-diagnosed, it downright doesn't exist." His opinion does not appear to be echoed by the majority of doctors. Still, there are enough like him that it sometimes makes diagnosis and treatment difficult to find. Even with doctors that are familiar with FMS, the diagnostic process often exceeds five years.

Literally defined, fibro refers to fibrous or connective tissues. Myalgia means pain in one or more muscles. Therefore, fibromyalgia means pain in the connective tissues and muscles. It is often referred to as a soft tissue musculoskeletal condition.

While this may be literal, it is hardly fully descriptive. It is often described as feeling like one has the perpetual flu. This is not quite enough, either. Today, it is the second most prevalent rheumatic illness and ten million people, in the USA alone, share the plight of this intensely painful disorder. Among the 1.5-6% of the world's population with a positive diagnosis for fibromyalgia, there is a broad range of descriptions.

This holds true for the symptoms of FMS, as well. They are as varied and individual, as are humans. The more frequently experienced symptoms are insomnia, extreme exhaustion and/or fatigue, hormonal dysfunction, irritable bowel and bladder, blurred vision, thermal regulation dysfunction, dysmenorrhea, TMJ, food and environmental allergies, unrefreshing sleep, mitral valve prolapse, muscle pain and spasms, joint pain, myofascial pain, depression, anxiety, sugar cravings, excessive thirst, confusion, memory loss, chest pain, irritability, acne, diarrhea, gum disease, oral inflammation, and headaches. The list goes on and on, yet, comparing one patient to another will produce two entirely different sets of symptoms. This, in itself, can impede the diagnostic process as numerous illnesses and disorders share these symptoms.

In 1990, the American College of Rheumatology established diagnostic criteria, which aids in distinguishing FMS from other disorders. This criteria must include, but is not limited to:

Widespread persistent muscle/joint pain, not explained by an inflammatory or degenerative musculoskeletal disorder, for 3 or more months

Ongoing fatigue for a similar time period

Tenderness in at least 11 of 18 tender points, on digital palpation.

This diagnostic criteria is beneficial, yet FMS continues to be misdiagnosed and confused with illnesses such as Chronic Fatigue Syndrome, Myofacial Pain Syndrome, Lupus, Epstein-Barr, and many others. The chronic nature of each of these, demographics, and similar therapies adds to the confusion.

Comparative tests by researchers to distinguish between multiple chemical sensitivities, fibromyalgia, & chronic fatigue were conducted in the early 1990's, using patient questionnaires to evaluate symptoms. The results showed that 70% of those previously diagnosed with FMS, and 30% of those diagnosed with MCS, met criteria for CFS established by the Center for Disease Control.

Many of the symptoms mimic such illnesses and initial diagnosis is usually something other than FMS until ruled out by imaging studies, blood tests, & other clinical tests. To date no tests for positively identifying FMS exist, though a February 1999 news release has named the Anti-polymer Antibody Assay as appropriate for FMS testing on the basis that researchers have discovered anti-polymer antibodies in the blood of FMS patients.

Recent reports of completed tests are beginning to identify specific clinical factors. Still, these have yet to be grouped together into a cohesive package of identifying factors. Reaching the desks of doctors with this information, once established, is another concern. A diagnosis by process of elimination coupled with established criteria remains the general course of events.

To complicate matters even more, there often exists a co-morbid diagnosis of one or more of the illnesses FMS mimics. Frequent co-morbidity exists with Irritable Bowel Syndrome, migraine headaches, osteoarthritis, and rheumatoid arthritis, as well as others. In his April 1999 FMS review, Dr. Don L. Goldenberg of the Department of Rheumatology, Newton-Wellesley Hospital in Massachusetts, claims FMS is present in 10% to 40% of patients with systemic lupus erythematosus and in 10% to 30% of patients with rheumatoid arthritis. He further claims that 25-50% of all patients referred for treatment of Systemic Lyme Disease never had Lyme at all, but rather FMS. With other than the systemic illnesses, Dr. Goldenberg feels there is little value in attempting to differentiate between FMS or the other syndromes as the overlap of symptoms is so extensive.

Many skeptics appear as though they would like us to believe that FMS is entirely a psychiatric illness. Anti-depressant medications are often prescribed for FMS patients, and frequently prove helpful in alleviating some of the symptoms. There is an association between FMS and major depression. However, it is the old, "which came first, the chicken or the egg?" argument. The unrelenting, often disabling pain of FMS can certainly lead to depression. On the flip side, the classic psychosomatic theory claims depression as the cause, not the result.

Patients with a concurrent diagnosis of Irritable Bowel Syndrome are shown to have a more frequent past and present diagnosis of depression. There is a higher frequency of comorbidity with depression and IBS in women who experienced physical and/or sexual abuse as children.

Stress plays a major role in stimulating and/or exacerbating the core symptoms of many of these crossover disorders. However, the majority of those with FMS are not depressed. Only one-third of FMS patients shares a concurrent diagnosis of major depression, eliminating the probability of it being the cause of FMS.

Fibromyalgia Syndrome crosses all borders, socioeconomic, age, racial or gender. Women are diagnosed between five and twenty times more frequently than are men. Women have been shown to have a lower pain tolerance and threshold, and generally exhibit more health-seeking behavior than do men. The diagnostic percentages for both sexes increase as age at the time of diagnosis rises above fifty.

No single identifying cause of fibromyalgia has been discovered. More than 100 years of research has only recently begun to find any consistent soft tissue or muscle abnormalities. Electric stimulation produced greatly increased pain levels of the upper extremities in FMS patients as opposed to normal controls. FMS patients tend to be hypersensitive to pain and auditory stimuli, and there is some evidence to suggest these people have an actual altered perception and response to these stimuli. It is hypothesized that one of the main reasons for the presentation of extreme physical symptoms is the high level of breakdown in muscle tissues.

Research completed in 1999 and, so far, in 2000, has discovered reduced levels of serotonin, elevated levels of Substance P (a neuropeptide), and abnormal anti-nociceptive (pain stimulus) peptides in the cerebral spinal fluid. Nearly a quarter of patients studied with cervical spine injuries developed FMS, while a much smaller number developed this following a leg injury. With FMS, many believe they can trace onset back to a specific emotionally or physically traumatic event in their lives. Brain imaging studies of women with FMS have revealed a reduction in the cerebral blood flow to the thalamus and caudate nucleus (1 of 4 basal ganglia). The caudate nucleus and thalamus are responsible for sending the signal of noxious stimuli to the brain. Reduced blood flow to these areas has been identified in other chronic pain disorders as well.

A study at the University of Washington Medical Center in the early 1990's attempted to clarify as to whether or not FMS patients are more susceptible to actual muscle damage from activity than are non-FMS persons. The results showed there was no more damage to one group than the other. However, researchers then questioned as to whether pain is an adequate indicator of muscle damage. Magnetic resonance spectroscopy indicated that those with FMS had a consistently higher occurrence of phosphodiester than did healthy subjects, indicating abnormalities in the thin, transparent sheath of striated muscles.

Further studies in this vein have followed, with the conclusion in one from 1998 stating that, "P-31 MRS provides objective evidence for metabolic abnormalities consistent with weakness and fatigue in patients with FM."

Research reported in March 2000 finds that the basal autonomic state of persons with FMS is "characterized by increased sympathetic and decreased parasympathetic tones." The physical, symptomatic, and psychological health of these patients implies an autonomic dysregulation. Other testing reports in 2000 show that there is a significant difference in the way FMS patients respond to pain compared to controls.

Sleep abnormalities are present in the majority, if not all sufferers. Men tend to suffer from sleep apnea. Both men and women may experience abnormalities in slow-wave-sleep and non-rapid-eye movement cycles.

There is also evidence that the tendency to develop this disorder may run in families, suggesting a genetic causal factor. Abnormalities in various neurohormones, disturbances in microcirculation, low phosphate and magnesium, deficient adenosine triphosphate synthesis, exaggerated response to certain hormones, sympathetic and parasympathetic imbalances and interference in the release of growth hormone have all recently been clinically identified in FMS.

Viral factors, particularly Epstein-Barr virus, have been strongly suggested, by patients and researchers, as a causal factor. The theory is that a comorbid infectious state has depleted immunological response, creating inflammation, which increases the nitrous oxide levels, raising the homocysteine levels in cerebral spinal fluid. One quarter of all Lyme sufferers developed FMS after completion of Lyme treatment, also presenting the possibility of a viral causal agent. Still, there is no conclusive evidence to establish this as fact.

In a January 1999 report by Dr. Garth L. Nicolson, Dr. Nicolson claims that as many as 70% of those with a positive FMS diagnosis may be responding to mycoplasmas and other bacteria, and/or exposure to "chemical or other insults" capable of suppressing immune function. He does not believe these to be the actual cause of FMS, but rather that they exacerbate the symptoms and progression of the illness. Studies he sites in his report, and results of his own studies claim the majority of patients tested present evidence of the presence of pathogenic species, such as: M. fermentans, M. penetrans, M. pneumoniae, M. genitalium, M. pirum and M. hominis. The report further claims the use of blood testing specific to identifying mycoplasmal infections, as well as polymerase chain reaction and nucleoprotein gene tracking as effective validation.

Lily G Casura reports in the January 2000 issue of Townsend Newsletter that patients have stated they feel like they were "run over by a Mack truck". There are moments, even full days when it feels as though there is not a single part of one's body that is not feeling extreme pain. This affects daily activities, mood, ability to digest foods, sleep, and body parts and actions most people cannot even identify. The mental confusion and short-term memory loss are often overwhelming and embarrassing. Even a loving hug can bring on an episode of excruciating pain that may last for days.

The treatments for fibromyalgia are as varied as diagnosis and apparent cause. Since there is no singular biophysiological cause, how can there be a cure or a single treatment protocol? While researchers continue to ponder their results, the medical profession and alternative health care providers continue to debate the best course of action to take. Within each of those sects, med-to-med and alternative-to-alternative debates abound. Needs to address that all agree upon are to re-establish appropriate sleep patterns, treat depressive states, and that increased exercise is of major benefit.

The medical profession is split on treatment on a number of fronts. Those believing only in the psycho-factor tend to treat with anti-depressants and sleep medications and little else. Others will add narcotic pain relievers. Some believe only non-steroidal painkillers to be effective, while some conclude that neither type works. Dr. Goldenberg believes, "Medicines that affect pain perception, sleep, and mood have been useful and should be integrated with activity, exercise, and educational programs." Dr. Devin J. Starlanyl believes guifenesin, a common expectorant in cough syrup, given at specific doses to be effective. She also follows with recommendations of exercise and education.

Here another split occurs as to what type of exercise is appropriate. Some recommend intense aerobic, cardio-vascular exercises, some believe in strength training or slow-stretch types like Tai chi or yoga.

A few enlightened medical professionals, like Dr. Christine Fritsch, MD, of Kaiser-Permanente North, Dr. Bill Sieber of CorText Research in CA, or chiropractors like Dr. Harvey Eckhart of Santa Rosa, CA's Preventive Health Care Clinic find value in the addition of supplements to the regime. Dr. Fritsch recommends bromelain and chondroitin to reduce inflammation and support joint integrity. Dr. Eckhart is examining the effects of a protein digestion enzyme activating formula and an antioxidant formula, on the basis that many believe the inability to digest proteins adequately and free radical damage are two significant contributors to FMS.

Dr. Sieber suggests the use of Omega-3 fatty acids, using a high protein, low carbohydrate diet, and adding vitamin C and magnesium supplements. Low doses of anti-depressant medications may be useful in pain control, and melatonin for better sleep. Dr. Sieber also touches briefly on the National Institute of Health (NIH) who no longer advocates the use of cortisone injections in CFS or FMS, on trials using Epogen, a medication normally used to treat renal failure and its accompanying anemia in HIV patients, and on the use of the herb licorice in the regime, but admits to no first hand knowledge of its use. Within herbal communities, licorice is known for its tonic properties, specific to pain, energy and digestion.

Dr. David Darbo, MD at the Indianapolis Medical Center has company in his belief that magnetic therapy is beneficial to nine out of ten people among the general population. Magnets are believed to support overall wellness by supporting the body's natural processes of relaxation and stimulation, and allowing the cells of the body to function at optimum levels. The claim that they work especially in targeting instances of chronic fatigue, pain, and sleeplessness, make the appeal to FMS sufferers great.

Dr. Samuel K. Yue, MD and Director of the Minnesota Pain Center in St. Paul, has been testing the effects of the hormone relaxin as a treatment. His premise is that the onset of FMS is connected to either a systemic deficit of the hormone, or the body's inability to use the existing hormone because of autoimmune antibodies or faulty cellular reception. Relaxin is known to effect muscle and connective tissue integrity, but tests so far have been inconclusive.
Ó2000Thorp,E.,C.N.E.,C.D.C.,C.L.P.T.