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WHAT IS FIBROMYALGIA SYNDROME?

(pronounced fie-bro-my-al-ja)

A wide spread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons-the soft fibrous tissues in the body. FMS used to be called fibrositis, implying that there was inflammation in the muscles, but research has proved that inflammation did not exist.

Most patients with FMS say they ache all over. Their muscles may feel like they have been pulled or over worked. Sometimes the muscles twitch and other times they burn. More women then men are afflicted with FMS. Yet, studies reveal that the condition is equally severe in both genders and that it shows up in people of all ages.

To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason why experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one in the same. Other conditions that overlap with FMS include Gulf War syndrome and multiple chemical sensitivities.

Fibro Tender Point locations below:

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This illustration on the right is borrowed from Dr. Devin Starlanyl's site

How is FMS diagnosed?

For the most part, routine laboratory testing reveals nothing. However, upon physical examination, patients will be sensitive to pressure in certain areas of the body, called tender points. To meet the diagnostic criteria, patients must have widespread pain in all four quadrants of their body for a minimum duration of three months and at least 11 of the 18 specified tender points. These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Roughly 75% of CFS-diagnosed patients will meet the FMS criteria.

While many chronic pain syndromes display some symptoms that overlap with FMS, the 1990 multi-center criteria study (published in Feb. 90 issue of the Arthritis and Rheumatism) evaluated a total of 558 patients, of which 265 were classified as controls. These control individuals weren't your typical healthy "normals". They were age and sex matched patients with neck pain syndrome, low back pain, local tendinitis, trauma related pain sydromes, rheumatoid arthritis, lupus, osteoarthritis of the knee or hand, and other painful disorders. These patients all had some symptoms that mimic FMS, but the trained examiners were not foiled-they hand picked the FMS patients out of the "chronically ill" melting pot with an accuracy of 88%. FMS is not a wastebasket diagnosis!!

What if you have widespread pain, but you only have 7 or 8 of the diagnostic tender points? A 1996 consensus report by 35 researchers says that you may still be diagnosed with FMS as long as you also battle many of the associated symptoms described below.

Symptoms and Associated syndromes:

Pain- The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting and stabbing. Intense burning may also be present, which can feel as though there is acid running though your arteries. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

Fatigue- This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concertrating, e.g., brain fog.

Sleep Disorder- Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake like brain- activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.

In most cases, a physician doesn't have to order sleep lab tests to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a mack truck- what doctors refer to as unrefreshing sleep-it is reasonable for your physician to assume that you have sleep disorder. It should be noted that most patients diagnosed with CFS have some alpha-EEG sleep pattern and some FMS-diagnosed patients have been found to have other sleep disorders, such as sleep apnea, sleep myoclonus(night time jerking of the arms and legs), restless leg syndrome, and bruxism (teeth grinding). The sleep pattern for clinically depressed patients is directly different from that found in FMS or CFS.

Irritable bowel syndrome- constipation, diarrhea, frequent abdominal pain, abdominal gas and nausea represent symptoms frequently found in roughly 40-70% of FMS patients.

Chronic headaches- recurrent migraine or tension type headaches are seen in about 50% of FMS patients and can pose as a major problem in coping for this patient group.

Temporomandibular Joint Dysfunction Syndrome- (TMJ) This syndrome, sometimes refered to as TMJ or JMD, causes tremendous jaw- related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

Multiple chemical sensitivities- Studies reveal that FMS patients are sensitive to odors (perfumes, exhaust fumes, cigarette smoke, etc.), loud noises,bright lights, and sometimes even the medications that are prescribed for treating their FMS.

Other common symptoms- Premenstrual syndrome and painful periods,chest pain, morning stiffness,cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities,dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

Aggravating factors- Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion can all contribute to symptom and flare-ups.

What causes FMS? The causes of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automoblie accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidisim. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that's already present.

What could this abnormality be? Theories pertaining to alterations in pain related chemical transmitters (particularly substance P, seretonin, and norpinephrine),immune system function, sleep physiology, and hormonal control are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The bodies response to exercise, stress and simple alterations in position (vertical versus horizontal) are also being evaulated. In addition , substance P is increased three fold in the spinal fluid of people with FMS, but it is normal in the blood. Substance P is a major pain transmitter and plays a role in sleep, digestion, and other body functions. Ironically, many of the drugs prescribed for FMS/CFS may have a favorable impact on these transmitters as well.

How is FMS treated?

Traditional treatments are geared towards improving the quality of sleep, as well as reducing the pain. Because deep level (stage 4) sleep is so crucial for many body functions, such as tissue repair, antibody production , and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in FMS patients are thought to be a major contributing factor to the symptoms of this condition. Medicine's that boost your body's level of serotonin and norepinephrine- neurotransmitters that modulate sleep, pain and immune system function-are commonly prescribed. Example drugs commonly used in low doses are Elavil, Flexeril, Sinequan, Paxil, and Klonopin. Ambien may be used to aid sleep. Ultram may help with the pain, along with many other drugs that minimize the effects of substance P, including opiods for severe pain.

In addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture,acupressure, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage or a gentle exercise program.

What is the prognosis?

Long term follow-up on FMS has shown that it is chronic, but symptoms wax and wane. The impact that FMS can have on daily living activites, including the ability to work a full-time job, differs among patients. Overall, studies have shown that FMS can be equally disabling as rheumatoid arthritis.

Self -Help Strategies

Life style modifications may help you conserve energy and minimize pain. Learn what factors aggravate your symptoms and avoid them, if possible. Join your local support group and become informed about your condition by subscribing to the FIBROMYALGIA NETWORK newsletter. In this newsletter you will read about research findings, new treatment options, and tips on coping with FMS and CFS. You may also contact the FIBRO network for a listing of patients contacts and physicians referrals.

The phone number is 800-853-2929.

This page was made with information used directly from the Fibromyalgia Network's patients's guide to Fibromyalgia (FMS). Reprinted from ARTHRITIS AND RHEUMATISM journal, copyright 1990. Used by permission of the American College Of Rheumatology.