The Arthritis Foundation and the American College of Rheumatology gratefully acknowledge the assistance of Don L. Goldenberg, M.D. of Boston, MA in the preparation of this booklet.
This booklet is written for people who have fibromyalgia and their family and friends. It is not meant to take the place of treatment and teaching provided by a doctor and other health professionals. However, it should help you understand the disease so you can take an active part in keeping it under control.
If you have any questions as you read the booklet, write them down and take the list with you when you visit your doctor.
WHAT IS FIBROMYALGIA?
Fibromyalgia syndrome is a common form of generalized muscular pain and fatigue. The name "fibromyalgia" means pain in the muscles and the fibrous connective tissues (the ligaments and tendons). This condition is referred to as a "syndrome" because it's a set of signs and symptoms that occur together. (A sign is what the physician finds on examination; a symptom is what a person reports to the doctor.) Fibromyalgia is especially confusing and often misunderstood because almost all its symptoms are also common in other conditions. In addition, it does not have a known cause.
The name "fibromyalgia" has largely replaced the term "fibrositis," which was once used to describe this disorder. The "itis" means "inflammation" - a body process that can result in pain, swelling, warmth, redness, and stiffness. Early reports of this condition described inflammation in muscles. However, during the past 50 years investigators have proven that inflammation is not a significant part of fibromyalgia.
Fibromyalgia is a form of "soft-tissue" or muscular rheumatism rather than "arthritis of a joint." The word "rheumatism" refers to pain and stiffness associated with arthritis and related disorders of the joints, muscles, and bones. Fibromyalgia mainly affects muscles and their attachments to bones. Therefore, although fibromyalgia may feel like a joint disease, it is not a true form of arthritis and does not cause deformities of the joints.
Unfortunately, because certain syndromes lack physical and laboratory findings (signs), but depend mostly on a person's report of complaints and feelings (symptoms), these syndromes are often viewed as not being real or important. In the past, fibromyalgia suffered from this type of negative thinking.
Over the past ten years, however, fibromyalgia has been better defined through studies that have established guides for its diagnosis. These studies have shown that certain complaints, such as generalized muscular pain and tender points, are present in people with fibromyalgia and not commonly present in healthy people or people with other rheumatic conditions. These diagnostic features separate fibromyalgia from other types of conditions that have chronic muscle and bone pain.
SYMPTOMS AND SIGNS
Pain: Pain is the most prominent symptom of fibromyalgia. It is generally felt all over, although it may start in one region, such as the neck and shoulders, and seems to spread over a period of time. Fibromyalgia pain has been described in a variety of ways including: burning, radiating, gnawing, sore, stiff, and aching. It often varies according to time of the day, activity level, weather, sleep patterns, and stress. Most people with fibromyalgia say that some degree of pain is always present. They sense that the pain is mainly in their muscles and often note that fibromyalgia feels like a persistent flu. For some people with fibromyalgia the pain may be quite severe.
Although the general physical examination is usually normal, and individuals may look well, a careful examination of their muscles will demonstrate very tender areas at specific locations. The presence and pattern of these characteristic "tender points" separate fibromyalgia from other conditions. Not all physicians are familiar with the evaluation of these tender points. However most rheumatologists (specialists in arthritis and rheumatism) do know when and how to perform such an examination.
The tender areas in fibromyalgia are similar in location to sore and tender areas in other common muscle and bone pain disorders such as tennis elbow and trochanteric bursitis (inflammation of the outer side of the hip). They are found in many locations and are almost always on both sides of the body. People often are not aware of the exact location or even the presence of many of these tender points until they are specifically examined by a doctor.
Fatigue and Sleep Disturbances: About 90 percent 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. Generally, people with fibromyalgia wake up feeling tired, even after sleeping throughout the night. They may be aware that their sleep has become lighter and that they wake up during the night. Scientific studies have demonstrated that most people with fibromyalgia have an abnormal sleep pattern, especially an interruption in their deep sleep.
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.
Nervous System Symptoms: Changes in mood and thinking are common in fibromyalgia. Many individuals feel "blue" or "down," although only about 25 percent are truly depressed. Some people also feel very anxious. 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. However, some researchers feel there may be a "biologic link" between fibromyalgia and some forms of depression and chronic anxiety.
As with other chronic illnesses, people with fibromyalgia may report difficulty concentrating or performing simple mental tasks. There is no evidence that these problems become more serious. Similar problems have been noted in many people with sleep disturbances of all kinds or with mood changes.
People with fibromyalgia may have feelings of numbness and tingling in their hands, arms, feet, legs, or sometimes in their face. These feelings can suggest other disorders such as carpal tunnel syndrome, neuritis, or even multiple sclerosis. Therefore, people with fibromyalgia often undergo numerous tests for such conditions, only to find that the test results are normal.
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.
HOW IS FIBROMYALGIA DIAGNOSED?
Fibromyalgia is diagnosed by the presence of widespread pain in combination with tenderness at most of the specific locations. Unfortunately, no one laboratory test or x-ray can diagnose fibromyalgia. Such tests are only helpful when they prove the presence of other conditions, such as low thyroid hormone (hypothyoidism), which can cause fibromyalgia signs and symptoms. A careful history and physical examination can identify other conditions that may cause chronic pain and fatigue and identify the "tender points" that are seen in fibromyalgia.
Because the complaints of fibromyalgia are so general and often bring to mind other medical disorders, many people undergo complicated and often repeated evaluations before they are diagnosed as having fibromyalgia. Furthermore, since not all doctors have been trained to recognize this disorder, it is important for people to see a rheumatologist or other doctor who is very familiar with the diagnosis and treatment of this condition.
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. Physical or emotional trauma could precipitate fibromyalgia in a number of ways. For example, a physical trauma such as having an infection of flu could lead to certain hormonal or chemical changes that promote pain and worsen sleep. In addition, people with fibromyalgia may become inactive, depressed, and anxious about their health, further aggravating the disorder.
In recent years, studies have shown that in fibromyalgia the muscle is especially vulnerable to decreased circulation and minor injury. Therefore, smoking and inappropriate exercise or poor posture may aggravate fibromyalgia. Research has also looked at the role of certain hormones or body chemicals that may alter pain, sleep, and mood. Eventually, this research should result in a better understanding of fibromyalgia, as well as more effective treatment, and even prevention!
HOW IS FIBROMYALGIA TREATED?
Currently, treatment of fibromyalgia includes:
. medications that diminish pain and improve sleep
. exercise programs that involve muscle stretching
and improve cardiovascular fitness
. relaxation techniques and other measures to help
you relax tense muscles
. educational programs to help you cope with
fibromyalgia
As with most chronic illnesses, the treatment should be tailed to meet your individual needs. Some people with fibromyalgia have mild symptoms and need very little treatment once they understand what fibromyalgia is and what worsens their condition. Most people do benefit from a comprehensive care program.
Medications: The anti-inflammatory medications used to treat arthritis and many rheumatic conditions do not have a major effect in fibromyalgia. However, modest doses of aspirin, ibuprofen, or acetaminophen may help to provide some pain relief and lessen stiffness. Narcotic pain relievers, tranquilizers, and cortisone derivatives have been shown to be ineffective and should be avoided because of their potential side effects.
Medications that promote deeper sleep and also relax muscles help many people with fibromyalgia. These include amitriptyline (Elavil), doxepin (Sinequan), cyclobenzaprine (Flexeril), and related medications. Although these medications are also used to treat depression, in people with fibromyalgia they are generally used in very low doses and only at bedtime. Thus, they are not specifically used as antidepressants or tranquilizers in the treatment of fibromyalgia but may relieve pain and improve sleep.
Although many people sleep better and have less discomfort when they take these medications, the improvement varies greatly from person to person. In addition, the medications may have side effects such as daytime drowsiness, constipation, dry mouth, and increased appetite. These side effects are rarely severe, but can be disturbing and may limit the use of these drugs. Therefore, a number of different medicines may need to be tried and doses adjusted in consultation with a doctor.
Exercise and Physical Therapy: Two principles of treating fibromyalgia are to increase cardiovascular (aerobic) fitness and to stretch and mobilize tight, sore muscles. You may be reluctant to exercise if you are already in pain and feel tired. Low or non-impact aerobic exercises such as brisk walking, biking, swimming, or water aerobics are generally the best way to start such a program. Exercise on a regular basis, such as every other day, and gradually increase to reach a better level of fitness.
Gently stretch your muscles and move your joints through an adequate range of motion daily and before and after aerobic exercise. Physical therapy may be helpful and could include techniques such as: heat, ice, massage, whirlpool, ultrasound, and electrical stimulation to help control pain. Physical therapists may also be consulted to design a specific exercise program to improve posture, flexibility, and fitness.
COPING WITH FIBROMYALGIA
Often people with fibromyalgia have undergone many tests and have seen many different specialists while in search of an answer. This leads to fear and frustration, which may increase the pain. People with fibromyalgia are often told that since they look well and their tests are normal, they are not suffering from a real disorder. Their family and friends, as well as physicians, may doubt the reality of their complaints, increasing their feelings of isolation, guilt, and anger.
You and your family should understand that fibromyalgia is a real cause of chronic pain and fatigue and must be dealt with as with any chronic illness. Yet, fibromyalgia is not life-threatening and causes no deformity. Although symptoms may vary, the overall condition rarely worsens over time.
Often just knowing fibromyalgia is not a progressive, crippling disease allows people to stop additional expensive testing and develop a more positive attitude toward their condition. Relaxation techniques, such as meditation, visual imagery, progressive muscle relaxation, yoga, or biofeedback, may also be helpful. You should examine your own sleep patterns and avoid aggravating factors such as excess caffeine and alcohol. If you feel depressed or very anxious, it is important to get help from a mental health professional. The more you learn about your condition, and the more you take an active role in finding the best means to lessen your symptoms, the better the outcome.
Support groups and educational classes organized by the Arthritis Foundation have been a source of help for many people with fibromyalgia. Just knowing that you are not alone can be a source of support.
Some people with fibromyalgia have such severe symptoms that they are unable to function well at work or socially. These individuals may require greater attention in a program that employs physical or occupational therapists, medical social workers, rheumatology nurses, mental health professionals, rehabilitation counselors, and sleep specialists.
IN SUMMARY
Fibromyalgia is a common cause of chronic, generalized pain. It is not damaging to the body in any way, but it is usually a painful disorder that does not go away and waxes and wanes. For example, levels of pain and fatigue in some people appear to be as bad as in rheumatoid arthritis. Since fibromyalgia may interfere with all aspects of a person's life, a carefully planned treatment program is essential. This begins with a correct diagnosis and a detailed explanation of the condition.
With proper therapy, most people with fibromyalgia improve and are able to deal with their complaints. However, a better understanding of the causes and aggravating factors in fibromyalgia is needed to that better treatment and even prevention can be developed.
