Newly Diagnosed Patients
Robert Bennett, MD
Fibromyalgia (fi-bro-my-AL-ja) is a very common condition of widespread muscular pain and fatigue. Seven to ten million Americans suffer from fibromyalgia (FM). 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 in their 20s or 30s. Recent studies have shown that fibromyalgia occurs worldwide and has no specific ethnic predisposition.
The Symptoms of Fibromyalgia
Fibromyalgia patients have widespread body pain which often seems to arise in the muscles. Some FM patients feel their pain originates in their joints. Pain that emanates from the joints is called arthritis; extensive studies have shown FM patients do not have arthritis. Although many fibromyalgia patients are aware of pain when they are resting, it is most noticeable when they use their muscles, particularly during 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 FM patients severely limit their activities including exercise routines. This results in their becoming physically unfit, which eventually makes their fibromyalgia 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. Patients with estalished rheumatoid arthritis, lupus (SLE), and Sjogren’s syndrome often develop FM during the course of their disease. The combination of pain and multiple other symptoms often leads doctors to pursue an extensive course of investigations, which are nearly always normal.
There are no blood tests or X-rays that show abnormalities diagnostic of FM. This initially led many doctors to believe that the problems suffered by FM patients were “all in their heads,” or that fibromyalgia patients had a form of masked depression or hypochondriasis. Extensive psychological tests have shown these impressions were unfounded. A physician’s diagnosis of FM is based on taking a careful history and the finding of tender areas in specific areas of muscle. These locations are called “tender points.” They are tender to palpation and often feel somewhat hardened if the muscle is stroked.
The Long-Term Outcome for Fibromyalgia
The musculoskeletal pain and fatigue experienced by fibromyalgia patients are chronic problems that tend 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. There is often concern on the part of patients, and sometimes physicians, that FM is the early phase of some more severe disease, such as multiple sclerosis, lupus , 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 have fibromyalgia also. It is important for these patients’ doctors to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus, etc. does not have any effect on FM symptoms. Patients with fibromyalgia do not become crippled with the condition, nor is there any evidence it affects their lifespan. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational, and avocational activities that 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
The treatment of FM is frustrating for both patients and their physicians. In general, drugs used to treat musculoskeletal pain, such as aspirin, non-steroidals (e.g. ibuprofen), 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 legs 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 or short acting sleeping medications may be beneficial. Patients need to understand these medications are not addictive when used in low dosages (eg., 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.
There is increasing evidence that a regular exercise routine is essential for all fibromyalgia patients. The increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do develop an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FM patients must avoid impact loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary bicycle, and pool therapy utilizing an Aqua Jogger (a floatation device that allows the user to walk or run in the swimming pool while remaining upright) seem to be the most suitable activities for FM patients. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity three 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 FM pain. Opioid analgesics (propoxyphene, codeine, morphine, oxycodone, methadone) may provide a worthwhile pain relief in a subgroup of severely afflicted patients, but fibromyalgia patients seem especially sensitive to opioid side effects (nausea, constipation, itching, and mental blurring) and often decide against the long-term use of these drugs. The use of opioid analgesics (narcotics) in the management of non-malignant pain has been a controversial issue for many doctors, with the usual reasons for concern: addiction, oversight by state medical boards, and criminal diversion of drugs. However, recent research has shown that addiction seldom occurs when these medications are use in chronic pain states. It is important to understand the difference between addiction and dependence (which occurs with all these drugs in the majority of patients (see Addiction/Dependence). Two particularly useful weak opioids in the management of FM pain are tramadol (Ultram) and the combination of tramadol with acetaminophen (Ultracet). Neither of these two medications is a FDA scheduled drug (i.e. they have minimal addiction potential).
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 lag of two to four days before any beneficial effects are noted. Other techniques that directly help the tender areas on a transient basis are heat, massage, gentle stretching, and acupuncture.
About 20 percent of FM patients have a co-existing depression or anxiety state that 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 FM if the psychiatric condition is appropriately treated. It is important to understand that fibromyalgia itself is not a psychogenic pain problem, and that treatment of any underlying psychological problems does not cure FM.
Most FM 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 that patients use a stopwatch 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 FM applicants are initially turned down by the Social Security Administration at the first review. However, each patient needs to be evaluated on an individual basis before any recommendations for or against disability are made.