Fibromyalgia General Information

Goldenberg, MD of Boston, MA...(excerpts)..

"The fatigue in fibromyalgia is similar to that in another condition called chronic fatigue syndrome (CFS). Some people with fibromyalgia have symptoms of CFS, and vice versa. For example, many people with CFS have the tender points and symptoms considered to be diagnostic of fibromyalgia. Because there is an overlap in these two common syndromes, it may not be possible to separate these two conditions, and one doctor may give a diagnosis of fibromyalgia whereas another may call the same condition chronic fatigue syndrome."

The pamphlet lists the major symptoms as follows:

1. Pain - Pain is the most prominent symptom of fibromyalgia. Fibromyalgia pain has been described in a variety of ways including: burning, radiating, gnawing, sore, stiff, and aching. They sense that the pain is mainly in their muscles and often note that fibromyalgia feels like a persistent flu.

2. Fatigue and Sleep Disturbances - About 90% of people with fibromyalgia describe moderate or severe fatigue with lack of energy, decreased exercise endurance, or the kind of exhaustion felt with the flu or with lack of sleep. Often the fatigue is more of a problem and more troubling than the pain. Scientific studies have demonstrated that most people with fibromyalgia have an abnormal sleep pattern, especially an interruption in their deep sleep.

3. Nervous System Symptoms - Changes in mood and thinking are common in fibromyalgia. Generally, the depression and anxiety seem to follow the onset of fibromyalgia symptoms and may be the result of the fibromyalgia rather than a cause of it. As with other chronic illnesses, people with fibromyalgia may report difficulty concentrating or performing simple mental tasks. People with fibromyalgia may have feelings of numbness and tingling in their hands, arms, feet, legs, or sometimes in their face.

4. Other Problems - Headaches, especially muscular (tension) and migraine headaches are common in fibromyalgia. Abdominal pain bloating, and alternating constipation and diarrhea are also common. This may resemble irritable bowel syndrome or "spastic colon." Similar bladder spasms and irritability may cause urinary urgency or frequency. The skin and circulation are often sensitive to temperature and moisture changes, resulting in temporary changes in skin color.

What causes or triggers fibromyalgia?

The single exact cause of fibromyalgia is unknown. Many different factors, alone or in combination, may trigger this disorder. For example, a number of stresses--such as an illness, physical trauma, emotional trauma, or hormonal changes--may precipitate the generalized pain, fatigue, sleep, and mood problems that characterize fibromyalgia. In recent years, studies have shown that in fibromyalgia the muscle is especially vulnerable to decreased circulation and minor injury.


There is more to suggest that the illnesses are very similar or perhaps even variations of the same illness. I personally have not made a decision one way or other but prefer to keep an open mind. Please read on:


An article from the Fibromyalgia Network dated January 1991, "FM/CFIDS IN CHILDREN", Based on an interview with pediatrician/researcher, Dr. David Bell, MD (Lyndonville, NY). (The following is an excerpt of the article, not the complete article.)

"The intent of this article is not to place you on edge. Instead, the following information should help answer questions that may already be brewing in your mind. FM Network interviewed pediatrician David Bell, MD, a doctor who believes that the two syndromes--FM and CFIDS--are the same. Below we report what Dr. Bell had to say about symptom presentation, prognosis, diagnosis and treatment of this disorder in children and teenagers--along with his advice on how parents can help children cope."


The Tuscaloosa CFS/CFIDS/FMS Support Group Newsletter, August 1993, Tuscaloosa, Alabama.

Is It FMS or CFS? Will the Real Illness Please Stand Up?!

The July 1993 issue of "Fibromyalgia Network" a newsletter for Fibromyalgia/Fibrositis/CFS support groups, reviewed the recent National Institute of Health's workshop on FMS (fibromyalgia syndrome). Among the speakers present was Dr. Steven Strauss, the leader of research on CFS at the Allergy and Infectious Disease Institute (NIAID). Dr. Strauss began his speech with an anecdote to describe the controversy between FMS and CFS: "While most rheumatologists have been tinkering with the left front axle and we (infectious disease specialists) have been tinkering with the right front axle---we are all too reluctant to look under the hood!" To explain further, Dr. Strauss stated: "The symptoms of CFS and FMS are broadly over-lapping and I think that diagnosis depends largely on which M.D. the patient goes to.... based upon..... what they perceive as bothering them the most."


An excerpt from a pamphlet put out by the Fibromyalgia Association of Florida, Inc., one resource of information listed with the NIH. "What Is Fibromyalgia? (Fibrositis)"

Chronic Fatigue Syndrome: The "Twin" of FMS

The chronic fatigue syndrome (CFS) is a condition of deep exhaustion that lasts for six months or more. Many people with CFS ache all over, and those who do usually have the same patterns of tender points as in fibromyalgia.

Other symptoms besides pain and fatigue match those of fibromyalgia, and CFS is widely regarded as a twin of FMS. It is probable that both conditions have the same origins, and they may turn out to be variations of the same illness.

The chronic fatigue syndrome is also called ME, for myalgic encephaleomyelitis, or CFIDS, (pronounced see-fids), for chronic fatigue and immune dysfunction syndrome.

Most people who report prolonged fatigue to their doctors are not likely to have CFS. Long lasting fatigue is associated with several other conditions as well.

The offical diagnosis of the chronic fatigue syndrome includes flu-like symptoms such as fevers, sore throats, headaches and painful lymph nodes in neck or armpits. In both CFS and FMS, people may blurred vision, or other eye problems at times. They may also have "cognitive impairment"--for example, they may find it difficult to concentrate or to find the words they want when speaking or writing.

The success of treatment for both syndromes varies with the individual. Medications may be tried until one is found that helps. Physical therapy or counseling may be advised. Exercise may be recommended, but should be tailored to each person's ability at any given time or it will worsen symptoms instead of reducing them.

Research on FMS and CFS is being combined at major U.S. institutions such as the Centers for Disease Control and the National Institutes of Health, and at medical centers across North American and in Europe. Results of this research are reported reguarly in chronicals and newsletters for patients as well as in medical journals.

(Text by LRH Publications, June 1993)


FIBROMYALGIA IS........

Other symptoms include:

5% of the general population is thought to be afflicted with FMS (approximately 12 million Americans). 80% of diagnosed FMS patients are women. Symptoms can begin in school-age children.

(Reprinted from the "Fibromyalgia Frontiers" newsletter Volume I, Number 3, Summer 1993 issue, published quarterly by the Fibromyalgia Association of Northern Virginia, Inc.; P.O. Box 2373, Centreville, 2VA 22020.)


SOME RECENT FINDINGS ON FMS PATIENTS


Recent findings among FMS patients include these:

A low growth hormone secretion rate. This hormone isrequired daily-- even in adults--to restore body tissues. Its absence may cause increased muscle pain.

An abnormal production of several neurotransmitters, including transmitters known to be involved in the regulation of pain. Neurotransmitters are chemicals produced by the brain and released at nerve endings to control a multitude of bodilly functions, including sleep, pain, and mood. The spinal fluid level of substance P (a pain transmitter and vaso-dilator) is elevated three-fold, while the concentrations of serotonin, dopamine, and norepinephrine are significantly low in FMS patients.

Low blood serum levels of essential amino acids, including tryptophan. Tryptophan is converted to serotonin in the brain; serotonin is involved in sleep regulation, pain control, and immune system function.

Mineral imbalances. Preliminary findings indicate that red blood cell magnesium levels are low. Magnesium is an essential catalyst for producing energy at the cellular level, and a lower concentration may contribute to a patient's symptoms of fatigue. Other minerals, such as zinc, also may be abnormally low.

An immune system dysfunction. Low levels of natural killer cell activity have been uncovered by two separate laboratories. While the number of killer cells is normal, they are present in a dormanat state (like guns without bullets). Natural killer cells represent part of the body's front-line immune defense, and their

inactivity may in some way contribute to an immune system impairment.

An abnormal muscle cell biochemistry may exist. Reduced energy stores in the muscles and correspondingly poor oxygen supply have been found by one research team. It has been suggested that an enhanced susceptibility to muscle tissue injury may contribute to the pain of FMS.

Symptoms suggesting an association with other hard to treat disorders, such as chronic fatigue syndrome.

A documentation of the alpha-delta sleep anomaly that often occurs in FMS, and the impact of disturbed sleep on the body's hormonal and immunological functions. This sleep disorder can be observed on an electroencephalogram (recorder chart) on which the brainwaves, or spikes, characteristic of waking appear interspersed among the shallow rhythmic brain waves typically seen on the EEG recorder chart during deep sleep. As a rule, when FMS patients wake up, they feel unrefreshed--as though they had not slept.

Preliminary studies in the United States and several other countries show that FMS is a highly prevalent and often disabling disorder that afflicts mostly women. The reported ranges are between 3 to 10% of the test population.

(Source: The Fibromyalgia Syndrome - - FMS)


Searching for Answers:

For many years, Dr. Goldstein has been building upon various theories that might help explain why patients with CFS and FMS have so many seemingly unrelated symptoms. He kept asking: "What system in the body could be dysregulated? What isn't working right to cause these syndromes? After a while it became apparent that all of these symptoms could be explained by how the brain regulates itself and the rest of the body, as well as how it is regulated by the body in an interactive network." The primary system that Goldstein suspects to be dysfunctional in patients is the LIMBIC SYSTEM. It is the structure that forms a ring around the center of the brain and it has projections to virtually all of the areas in the central nervous system.

"The limbic system is a high-order regulatory part of the brain that works somewhat like a computer to integrate input and determine the appropriate response for the given situation. It seems to me that the "computer" or limbic system isn't working right in CFS and FMS patients. It is too sensitive to certain stimuli; it doesn't filter them out properly (through a mechanism called sensory gating). And it doesn't process the inputs correctly either." Goldstein described a number of findings in CFS/FMS, and with each one, he indicated hypothetically how the limbic system might be involved. (shortening these for berevity) VIRUSES: According to Dr. Goldstein, the limbic system can alter cellular functions as well.

BRAIN SCANS: The cerebral areas with the greatest reduction in blood flow or metabolism tend to have neurological connections to and from the limbic system.

MEMORY PROBLEMS: Curt Sandman, Ph.D., of Costa Mesa, CA, has evaluated a number of CFS patients referred by Dr. Goldstein using a rigorous battery of cognitive tests. Patients had significantly more problems in making or storing memories, were more vulnerable to interference (losing their train of thought) and they were slower in decision making tasks than either healthy or depressed individuals. The authors comment that the pattern of memory concentration problems resemble those described for other diseases affecting the medial temporal cortex, hippocampus, and structures of the limbic system....once again, the limbic system is implicated.

BREATHING IRREGULARITIES: Shortness of breath and breathing problems during exercise have been described for both CFS and FMS patients. The limbic system plays an important role in regulating the body's stress response, and under normal circumstances, one would expect exercise to cause the following: - increase in temperature -increase in cortisol production -increase in growth hormone production -increase in catecholamines (norepinephrine and epinephrine) -increase in cerebral blood flow None of the above predictions occurred in the CFS/FMS patients. In fact, both temperature and cerebral blood flow decreased with exercise--the opposite of what one would expect. A related study in Holland came up with similar results.

LIMBIC SYSTEM DYSFUNCTION...A CASE OF BRAIN CONFUSION? "The degree to which inputs to the brain are weighed is controlled by the limbic system," explained Dr. Goldstein. "If it is dysregulated, it will not filter out unimportant inputs and it may tend to amplify others when it shouldn't (causing sensitivities to chemicals, drugs, bright lights, foods, etc.). So in the end, the way that the brain and body respond to any type of input would be messed up." So it is possible that FMS and CFS are neuroendocrine disorders involving limbic system dysfunction (or vise versa).

I had to read this over about 10 times to get it to sink in, and I couldn't repeat it, but it does sort of make sense to me. It seems that this theory could be quite possible. It makes me feel a sense of hope to see that there IS research going on.


Some people with FM may have SOME of these conditions, SOME of the time.

Physical Conditions

Mental & Emotional Problems Also a couple of books that were reviewed by my local FMS Association and are supposedly good.

Sick and Tired of Feeling Sick and Tired-Living with Invisable Chonic Illness

By: Paul J. Donoghue Ph.D, Mary E. Siegel, Ph.D, W.W. Norton & Company, New York

The Chronic Pain Control Workbook _ A Step by Step Guide for Coping with and Overcoming your Pain.

By E.M. Cataloano, M.A.


The definition, according to the Merck Manual, is: A group of common nonarticular rheumatic disorders characterized by achy pain, tenderness, and stiffness of muscles, areas of tendon insertions, and adjacent soft-tissue structures. These may be primary and generalized or concomitant with another associated or underlying condition, or localized and often related to overuse or micro-trauma factors.

It goes on to say: The term myalgia indicates muscular pain. Fibromyalgia indicates pain in fibrous tissues, muscles, tendons, ligaments, and other "white" connective tissues. Various combinations of these conditions may occur together as muscular rheumatism. Any of the fibromuscular tissues may be involved, but those of the occiput, low back, neck, shoulders, thorax, and thighs are especially affected. There is no specific histologic abnormality, and the absence of cellular inflammation justifies the preferred terminology of fibromyalgia rather than the older terms of fibrositis or fibromyositis.

The condition occurs mainly in females, may be induced or intensified by physical or mental stress, poor sleep, trauma, exposure to dampness or cold, and occasionally by a systemic, usually rheumatic, disorder. A viral or other systemic infection (e.g., Lyme disease) may precipitate the syndrome in an otherwise predisposed host. The primary fibromyalgia syndrome is particularly likely to occur in healthy young women who tend to be stressed, tense, depressed, anxious, and striving, but may also occur in adolescents (particularly girls) or in older adults, often associated with unrelated minor changes of vertebral osteoarthritis. Men are more likely to develop localized fibromyalgia in association with a particular occupational or recreational strain. A minority of cases may be associated with significant psychogenic or psychophysiologic manifestations. Symptoms can be exacerbated by environmental or emotional stress, or by a physician who does not give proper credence to the patient's concerns and discharges the matter as "all in the head."



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