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Fibromyalgia Syndrome
An
Informational Guide For FMS Patients,
Their Families, Friends and Employers
Written
by: Robert Bennett, M.D.
Oregon Health Sciences University
Contents
Introduction to Fibromyalgia Syndrome
The Symptoms of Fibromyalgia Syndrome
Diagnosing Fibromyalgia Syndrome
The Long Term Outcome for Fibromyalgia Syndrome
The Treatment of Fibromyalgia Syndrome
Support Groups and Doctors Interested in FMS
Research into Fibromyalgia Syndrome
Other FMS Information Resources
Introduction to Fibromyalgia Syndrome
Fibromyalgia (fi-bro-my-AL-ja) syndrome (FMS) is a very common condition of widespread muscular pain and fatigue. Seven to ten million Americans suffer from FMS. It affects women much more than men in an approximate ratio of 20:1. It is seen in all age groups from young children through old age, although in most patients the problem begins during their 20s or 30s. Recent studies have shown that fibromyalgia syndrome occurs world wide and has no specific ethnic predisposition.
The Symptoms of Fibromyalgia Syndrome
Fibromyalgia syndrome patients have widespread body pain which arises from their muscles. Some FMS patients feel their pain originates in their joints. Pain that emanates from the joints is called arthritis; extensive studies have shown FMS patients do not have arthritis. Although many fibromyalgia syndrome patients are aware of pain when they are resting, it is most noticeable when they use their muscles, particularly with repetitive activities. Their discomfort can be so severe it may significantly limit their ability to lead a full life. Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines. This results in their becoming physically unfit - which eventually makes their fibromyalgia syndrome symptoms worse.
In addition to widespread pain, other common symptoms include a decreased sense of energy, disturbances of sleep, and varying degrees of anxiety and depression related to patients' changed physical status. Furthermore, certain other medical conditions are commonly associated with fibromyalgia, such as: Tension headaches, migraine, irritable bowel syndrome, irritable bladder syndrome, premenstrual tension syndrome, cold intolerance and restless leg syndrome. This combination of pain and multiple other symptoms often leads doctors to pursue an extensive course of investigations - which are nearly always normal.
Diagnosing Fibromyalgia Syndrome
There are no blood tests or x-rays which show abnormalities diagnostic of FMS. This initially led many doctors to consider the problems suffered by FMS patients were all "in their heads" or that fibromyalgia syndrome patients had a form of masked depression or hypochondriasis.
Extensive psychological tests have shown these impressions were unfounded. A physician's diagnosis of FMS is based on taking a careful history and the finding of tender areas in specific areas of muscle. These locations are called "tender points" or "trigger points". They are tender to palpation and often feel somewhat hardened if the muscle is stroked. Frequently, pressure over one of these areas will cause pain in a more peripheral distribution, hence the term trigger point.
The Long Term Outcome for Fibromyalgia Syndrome
Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome patients is a chronic problem which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition. According to recent research, most patients can expect to have this problem lifelong. However, worthwhile improvement may be obtained with appropriate treatment, as will be discussed later in this brochure. There is often concern on the part of patients, and sometimes physicians, that FMS is the early phase of some more severe disease, such as multiple sclerosis, systemic lupus erythematosus, etc. Long term follow up of fibromyalgia patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with "well established" rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren's syndrome to also have fibromyalgia. It is important for their doctor to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus, etc. does not have any effect on FMS symptoms. Patients with fibromyalgia syndrome do not become crippled with the condition, nor is there any evidence it effects the duration of their expected life span. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational and avocational activities which leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humor and determination to push on.
The Treatment of Fibromyalgia Syndrome
The treatment of FMS is frustrating for both patients and their physicians. In general, drugs used to treat musculoskeletal pain, such as aspirin, non-steroidals and cortisone are not particularly helpful in this situation. As in any chronic pain condition, education is an essential component that helps patients understand what can or can't be done as well as teaching them to help themselves. It is important for a patient's physician to discover whether there is a cause for sleep disturbances. Such sleep problems include sleep apnea, restless leg syndrome and teeth grinding. If the cause for a patient's sleep disturbance cannot be determined, low doses of an anti-depressive group of drugs, called tricyclic anti-depressants, may be beneficial. Patients need to understand these medications are not sleeping pills and are not addictive when used in low dosages (e.g., Amitriptyline 10 mg at night) and have very few side effects. In general, routine use of sleeping pills such as Halcion, Restoril, Valium, etc. should be avoided as they impair the quality of deep sleep. A new hypnotic medication, Ambien, is claimed to avoid this problem.
There is increasing evidence that a regular exercise routine is essential for all fibromyalgia syndrome patients. This is easier said than done because increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do get into an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FMS patients must avoid impact loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary exercycle and pool therapy utilizing an Aqua Jogger (a flotation device which allows the user to walk or run in the swimming pool while remaining upright) seem to be the most suitable activities for FMS patients to pursue. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity, 3 times a week at 70% of maximum heart rate (220 minus your age) is sufficient to maintain a reasonable level of aerobic fitness.
Drugs such as aspirin and Advil are not particularly effective and seldom do more than take the edge off FMS pain. In general, narcotic pain killers containing codeine and other similar substances should be avoided, as in the long run they down regulate the body's production of its own pain produced substances called endorphins. Particularly painful areas often may be helped for a short time (2-3 months) by trigger point injections. This involves injecting a trigger point with a local anesthetic (usually 1% Procaine) and then stretching the involved muscle with a technique called spray and stretch. It should be noted the injection of a tender point is quite painful (indeed, if it is not painful the injection is seldom successful). After the injection, there is typically a 2-4 day lag before any beneficial effects are noted. Other techniques which directly help the tender areas on a transient basis are heat, massage, gentle stretching and acupuncture.
About 20% of FMS patients have a co-existing depression or anxiety state which needs to be appropriately treated with therapeutic doses of anti-depressants or anti-anxiety drugs often in conjunction with the help of a clinical psychologist or psychiatrist. Basically, patients who have a concomitant psychiatric problem have a double burden to bear. They will find it easier to cope with their FMS, if the psychiatric condition is appropriately treated. It is important to understand fibromyalgia syndrome itself is not a psychogenic pain problem and that treatment of any underlying psychological problems does not cure the fibromyalgia. Most FMS patients quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; we have recommended patients use a stop watch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else. For instance, if they are sitting down, they should get up and walk around or vice versa. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected, that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare fibromyalgia patients disabled and most FMS applicants are automatically turned down by the Social Security Administration. However, each patient needs to be evaluated on an individual basis before any recommendations for or against disability are made.
Support Groups and Doctors Interested in FMS
It is not always easy to find a doctor who has an interest in treating FMS patients. If you experience such difficulty, call your local chapter of the Arthritis Foundation or the Fibromyalgia Alliance of America (1-800-717-6711). Meeting other patients with fibromyalgia syndrome, particularly in the context of an educational seminar, is often a benefit in gaining a greater self-understanding. Over the past 5 years, many such support groups have sprouted up in the major cities and even in some of the smaller rural areas. Again, the name and location of such support groups may be found through the local Arthritis Foundation or the Fibromyalgia Alliance of America.
Research into Fibromyalgia Syndrome
Over the past 10 years there has been increasing recognition and interest in fibromyalgia syndrome. There are now over 1,000 publications in medical literature relating to this condition. The National Institutes of Health has recently recognized the importance of fibromyalgia as a cause of musculoskeletal pain and has set aside specific funding for research in this area.
National Fibromyalgia
Research Association
PO Box 500, Salem, OR 97308
