Fibromyalgia syndrome is a complex puzzling medical condition that afflicts at least 5 million U.S. residents. Fibromyalgia is characterized by chronic widespread pain, fatigue, sleep disturbance, stiffness, impaired memory and concentration, anxiety and depression. Although the cause is unknown, many scientists believe it may be rooted in central nervous system or neuroendocrine abnormalities. Researchers also are looking closely at the possible triggers and the overlap between fibromyalgia and other unexplained medical conditions such as chronic fatigue syndrome and irritable bowel syndrome. Until more is known about fibromyalgia's cause, its treatment is limited to managing the symptoms through exercise, education, cognitive-behavioral therapy, medications and physical rehabilitation.
Interview: Without a Cure, Symptom Management Is Key
Fibromyalgia syndrome affects approximately 2 percent of the U.S. population, or 5 million people. (3, 4, 10)
Fibromyalgia occurs seven times more often in women than in men, and it occurs most often in women of childbearing age. (4)
Fibromyalgia cannot be diagnosed through blood tests, X-rays or muscle biopsies.(3)
Widely used diagnostic criteria published by the American College of Rheumatologists establish that a person has fibromyalgia if he or she has had widespread pain for at least three months and pain in 11 of the body's 18 specific tender point sites when pressure is applied. (15)
Most people with fibromyalgia have problems sleeping, and approximately 90 percent experience moderate or severe fatigue, reduced endurance or exhaustion. (3)
Fibromyalgia patients visiting rheumatology clinics have reported very high rates of current and lifetime depression (47.9 percent and 56.7 percent, respectively). (13)
Among people with fibromyalgia, as many as 80 percent also have chronic fatigue syndrome, as many as 80 percent have headaches, 75 percent have temporomandibular disorders, as many as 60 percent have irritable bowel syndrome and 33 percent have multiple chemical sensitivity. (1)
Fibromyalgia patients visiting rheumatology clinics have averaged nearly 10 outpatient medical visits a year, or approximately 12 visits a year when nontraditional services such as acupuncture and massage are included. (13)
Fibromyalgia patients seen at rheumatology clinics are more likely than the overall U.S. adult population (16.2 percent compared with 2.5 percent) to receive Social Security disability payments, an indicator of long-term disability. (14)
In some cases, fibromyalgia starts after a person goes through a hormonal change, such as menopause.(24) In others, it may start after physical trauma, such as a car crash or other traumatic serious incident.(20)
Fibromyalgia has been shown to be associated with a change in the way the central nervous system processes pain.(18)
There is no established cure for fibromyalgia, but exercise and psychological therapy can help patients bring the condition under control.(22,23)
Russell Rothenberg, M.D., is a practicing rheumatologist in Washington, D.C.; chairman of the Medical Advisory Committee of the National Fibromyalgia Partnership and associate professor of medicine at the George Washington University Hospital. Dr. Rothenberg has a special interest in fibromyalgia syndrome and chronic pain, and he has treated more than 1,000 patients with fibromyalgia syndrome. He graduated from Albany Medical College in Albany, NY, and he completed an internship and residency at Long Island Jewish Medical Center and a rheumatology fellowship at Mt. Sinai Medical Center in New York City.
Q. Fibromyalgia syndrome often is treated by rheumatologists. Does this mean it is a rheumatic condition?
A. It is treated by rheumatologists for two reasons. First, many fibromyalgia patients have co-existent rheumatological disease such as systemic lupus, Lyme disease or Sjögren's syndrome. Second, rheumatologists are experienced in treating people with chronic pain and chronic fatigue, doing tender point examinations and evaluating myofascial pain. However, people with fibromyalgia could also be cared for by a physical medicine specialist or an internist with extensive experience treating fibromyalgia.
Q. Who is most at risk for developing fibromyalgia syndrome?
A. Women between the ages of 20 and 60 and people with concurrent rheumatologic problems or endocrine problems, such as thyroid disease, are at greatest risk. It is not unusual to see fibromyalgia at the time of menopause and some families that have multiple members with fibromyalgia in two or three generations. (24)
Q. What causes fibromyalgia syndrome?
A. Fibromyalgia is probably a composite of several illnesses that all have the same type of pathogenesis. In my practice, we see patients with post-viral-infection fibromyalgia, post-traumatic fibromyalgia, fibromyalgia associated with rheumatologic illness and what appears to be a genetic form of fibromyalgia that the person may have had since he or she was a teenager.
The cause may be a response to chronic pain, it may be endocrinological or it may be both. Ninety percent of people with fibromyalgia are women, so the cause may be somehow related to the physical make-up of women. Some studies have looked at neuroendocrine imbalances in fibromyalgia; these imbalances would be more common in women, who have hormonal variations over the 20- to 60-year age range.
Q. What course does the syndrome usually take?
A. People with fibromyalgia tend to experience gradual problems with chronic pain, chronic fatigue, non-restorative sleep disturbance where they wake up unrefreshed, cognitive changes affecting their ability to perform complex tasks and myofascial pain in which the person has severe spasms and soft-tissue pain. These problems can worsen with increased stress, lack of sleep, injuries or concurrent illnesses, but there is no clear pattern of progression.
Q. Is fibromyalgia associated with psychological distress, either as a cause or an effect of the syndrome?
A. The incidence of depression and distress in the fibromyalgia population is more than 40 percent,(13) which is about the same as that for the rheumatoid arthritis population. Often, patients with a flare-up of fibromyalgia also have a concurrent flare-up of depression or anxiety. People with fibromyalgia also become frustrated with their pain, their inability to concentrate and their fatigue. They can feel alienated from their families, colleagues and friends, who may not understand why the person has such fatigue and difficulty functioning and therefore may not provide much support.
Joining fibromyalgia support groups, getting significant others involved in support groups and having their doctors write letters to their employers to explain needed accommodations can go a long way in helping people with fibromyalgia.
Q. In what ways does fibromyalgia syndrome affect a person's ability to function in daily life?
A. One of the biggest problems is that many fibromyalgia patients have strenuous jobs and cannot get work accommodations, such as working only 30 hours per week, needed to allow the condition to improve. Only about 16 percent of people with fibromyalgia have full work disability, (14) and the majority continue to work but need accommodations. Additionally, heavy housework, any type of repetitive motion and child-rearing can be difficult. People with fibromyalgia need to conserve their energy, and it can be very difficult for them to work full-time, do household chores and take care of young children unless they are getting adequate help from their spouses or other family members.
Q. How can health care practitioners distinguish fibromyalgia syndrome from other conditions, such as chronic fatigue syndrome, that have overlapping symptoms?
A. A full medical evaluation, including blood tests and sometimes X-rays, is necessary to rule out other diseases that can mimic fibromyalgia syndrome. Tender point examination (15) and identification of myofascial pain and sleep disturbance are helpful, and a good clinical understanding of what these patients look like and how they behave is also important. Chronic fatigue syndrome is different from fibromyalgia and it is not associated with pain, abnormal tender points or non-restorative sleep disturbance.
It is also important to understand that people with fibromyalgia may have the same problems-allergies, migraine headaches, sinusitis, abdominal pain from irritable bowel syndrome-as everybody else. However, when a person has concurrent fibromyalgia, these problems, if left untreated, may actually cause the fibromyalgia to worsen. Furthermore, other common problems, such as temporomandibular disorders and irritable bowel syndrome, are amplified in fibromyalgia patients but are not necessarily part of the disease process.
Q. What are the goals in managing fibromyalgia syndrome?
A. The major goals are reduction of pain and fatigue. Other goals include improving cardiovascular fitness through a cardiovascular exercise program and improving muscle tone, posture and gait through a stretching and postural exercise program. Proper ergonomics is especially important for people with fibromyalgia who work at computers, do a lot of repetitive motion or sit in one spot all day. Reducing sleep disturbance and treating concurrent depression are also important in managing this syndrome. Physical therapy is often an important treatment since many patients cannot exercise or adequately stretch due to sever myofascial pain and they require professional help.
Q. Exercise is important, but does diet also play a role in managing Fibromyalgia?
A. Yes. Diet is important in several ways. Those who have fibromyalgia and concurrent food allergies could experience greater fibromyalgia symptoms if they eat foods to which they are allergic. Those with IBS who do not eat a high-fiber diet or do not avoid foods that cause them trouble may experience increased IBS symptoms, which may in turn lead to fibromyalgia flare. Furthermore, people with fibromyalgia can benefit from magnesium for muscle spasms and good multivitamins for general nutrition.
Q. What is the role of stress reduction in managing fibromyalgia?
A. Getting control of one's life is probably the most important way to reduce stress, which is related to increased pain and fatigue. That means conserving energy, taking part in an exercise program, controlling one's hours of work and managing one's family life. Behavior modification programs and support groups are useful in reducing stress.
Q. What is the real importance of multidisciplinary treatment in managing fibromyalgia?
A. It is extraordinarily important. Concurrent health problems-gynecologic problems; ear, nose and throat problems; respiratory problems-all affect fibromyalgia. Physicians who do not understand fibromyalgia may overtreat because the patient has a lot of symptoms, or they may underreact because they don't realize that a relatively minor sinus infection could cause increased myofascial pain of the head and neck and cause a fibromyalgia crisis. The primary care physician needs to understand the patient's fibromyalgia syndrome and how it affects the rest of his or her medical care and needs to work with a specialist and physical therapist or other health professionals who have a good knowledge of fibromyalgia.
Q. Do people with fibromyalgia syndrome often use alternative approaches or medicines, and are these alternatives beneficial?
A. Many people use alternative approaches for very good reasons-because we don't have a cure for fibromyalgia and treatments are limited. I believe that if alternative approaches are not harmful and if they promote a healthy lifestyle, then they may be beneficial for fibromyalgia patients. Physicians and other health professionals need to be open-minded. If we don't have a cure and we don't have answers for patients, then we can try alternatives and then make a medical assessment to see if the patient is getting better.
Q. Can a person with fibromyalgia ever be cured?
A. By definition, you can't cure a problem if you don't know its cause. However, many fibromyalgia patients improve over time if they have a good course of therapy, and we do see remissions. Severity and duration of the illness are important factors-the more severe and prolonged the illness, the less likely the person will have complete remission. Often, fibromyalgia symptoms improve with reductions in work hours, a good program of stretching and low-impact aerobic exercises and appropriate medications. (25)
Many Unexplained Syndromes May Share a Common Root
Fibromyalgia syndrome is unique in many ways, yet researchers and clinicians alike find that it overlaps with other unexplained medical conditions, including chronic fatigue syndrome (CFS), temporomandibular disorder (TMD), irritable bowel syndrome (IBS) and migraine headache.(1, 2, 12, 16)
Symptoms such as pain, fatigue, poor sleep and depression cut across these conditions, and many people who have one of these conditions also meet the diagnostic criteria for at least one other. (1, 16) A recent review of evidence shows, for example, that among people with fibromyalgia, as many as 80 percent also have CFS, 75 percent have TMD and as many as 60 percent have IBS.(1)
Some scientists, including rheumatologist Muhammad Yunus, M.D., of the University of Illinois College of Medicine at Peoria, believe that the cause of these unexplained conditions may be rooted in central nervous system dysfunction. For this reason, Yunus has dubbed these overlapping conditions "central sensitivity syndromes." (CSS) (16)
"The single most remarkable thing that binds these syndromes together is that they lack the usual pathology that one can see under a microscope or on an X-ray," Yunus explains. "However, virtually all of these syndromes appear to have a neurobiological basis that results in central nervous system hypersensitivity."
This hypersensitivity, he says, results in amplified, widespread and persistent pain. For example, "If one applies a painful stimulus like a pin prick to a normal person, the pain is felt in a small circle around the pin prick. In a person who has central sensitivity, the pain is felt in a much wider area and is much more unpleasant."
"An estimated 30 million to 35 million Americans suffer from CSS," Yunus says. (16) "These patients undergo a lot of genuine pain and distress, based on identifiable biopathophysiological mechanisms that produce significant disability to an individual and enormous costs for society." (16)
Much more research into central sensitivity syndromes is needed, Yunus suggests. For now, though, understanding CSS commonalties can help clinicians develop cross-cutting management plans and may provide impetus for developing drugs that can benefit people with more than one of these overlapping syndromes.
Interview #2: Research Looks At Causes, Triggers, Treatments
Daniel J. Clauw, M.D., is director of the Chronic Pain and Fatigue Research Center at the University of Michigan at Ann Arbor and has a special interest in fibromyalgia syndrome, chronic fatigue syndrome and Gulf War illnesses. Dr. Clauw received his medical degree from the University of Michigan and completed an internship and residency in internal medicine and fellowship in rheumatology at Georgetown University Hospital. He was chief of the Division of Rheumatology, Immunology and Allergy and a faculty member at Georgetown University before moving to the University of Michigan in mid-2001.
Q. What are the possible triggers or causes of fibromyalgia?
A. It is possible that disorders like fibromyalgia, as with most medical conditions, occur because of a combination of an underlying genetic predisposition and exposure to different things in the environment. We do not know exactly what the genetic predisposition to these types of conditions may be, but we know that fibromyalgia and similar disorders run in families. We know much more about the environmental exposures, or "triggers" of conditions such as fibromyalgia. For example, trauma from motor vehicle crashes, certain types of infections, stimulation of the immune system, emotional stress and exposure to different types of drugs or chemicals all seem to be capable of triggering the development of illnesses like fibromyalgia, chronic fatigue syndrome and Gulf War illnesses.
However, the "cause" probably is something quite different from the trigger. Although someone may have fibromyalgia triggered by a motor vehicle crash or an infection, the reason he or she experiences chronic pain, fatigue and sleep disturbance years later probably has little or nothing to do with that trigger. Rather, we think that fibromyalgia is caused by some kind of disturbance in how the central nervous system works. (17)
Q. What do we know about the role of the central nervous system in fibromyalgia?
A. One of the leading theories about fibromyalgia is that there is a chemical imbalance or some other type of dysfunction in various components of the central nervous system. Probably the easiest way to describe what happens is that the volume is turned up too high in the way people process pain and other types of sensory stimuli. (18) Although fibromyalgia is defined on the basis of widespread pain, many people with fibromyalgia find that they are also very sensitive to other stimuli like bright lights, odors and loud noises.
Q. Is there any evidence that genetics play a role in the development or course of fibromyalgia?
A. There is good evidence that fibromyalgia and similar conditions run in families. We know that first-degree relatives of people with fibromyalgia are much more likely to have fibromyalgia than people who do not have first-degree relatives with fibromyalgia. (19) However, we do not understand the relative contribution of nature versus nurture. It is unclear whether fibromyalgia runs in families solely because of genetic factors or whether the environment in which someone is raised plays a role. Small studies on this subject have been conducted but have not come to any firm conclusions about the genetic basis of fibromyalgia. A couple of large studies are now looking more carefully at this question.
Q. Has research offered any clues about why women are more likely than men are to experience fibromyalgia?
A. The way we define and diagnose fibromyalgia is partly responsible for the fact that it appears to be very much overrepresented in women. The current diagnostic criteria for fibromyalgia require both chronic widespread pain for three months, and pain with palpation at 11 of 18 specified tender points.(15) Population-based studies show that women are only 1½ times more likely than men to meet the criterion of chronic widespread pain, but are 10 times more likely than men to have 11 of 18 tender points. Therefore, including the requirement of 11 of 18 tender points in the diagnostic criteria makes fibromyalgia seem far more common in women than in men.
Also, it is important to recognize that for any given symptom, women are more likely than men to seek health care. Research shows that many men with symptoms of fibromyalgia drink alcohol to self-medicate, or try to manage these symptoms without medical attention. It is also likely (although not firmly established) that a man who comes in with the same symptoms as a women would be much less likely to be diagnosed with fibromyalgia, because of the perception that this is a female disease. Therefore, fibromyalgia probably really affects about two-thirds women and one-third men, but in clinical practice, far more women are diagnosed.
Q. What has research told us about the role of trauma in fibromyalgia?
A. Research has unequivocally told us that many people with fibromyalgia have their symptoms begin soon after physical trauma, such as a motor vehicle crash, but those results have been interpreted in different ways.(20) Some contend that people develop fibromyalgia because of the secondary gain - that they are faking or exaggerating symptoms to get disability or, insurance settlements. There is no firm evidence to support this hypothesis, but it is difficult to disprove because fibromyalgia is a subjective diagnosis.
Other experts believe that people who develop fibromyalgia after trauma are not faking but that trauma is one of many kinds of stress that may trigger fibromyalgia, it appears that when people are exposed to a number of stressors concurrently or when they are exposed to stress in an environment in which they do not have control or do not have support, the stress is more likely to lead to the development of a chronic illness like fibromyalgia or chronic fatigue syndrome.
Q. Can emotional trauma or traumatic events during childhood trigger fibromyalgia?
A. It is possible, if not likely, that childhood trauma is one of the many factors that either trigger the development of fibromyalgia or predispose a person to develop fibromyalgia later in life. The problem with making any firm conclusions about the role of childhood trauma is that it is almost entirely retrospective data and counts on people's self-report. However, we know from animal research that if an animal's mother was exposed to stress during the neonatal period, the animal has a different stress response than does a control animal that was not exposed to stress. We also know that the areas of the central nervous system that are likely to play a role in symptom expression in fibromyalgia are "plastic"-that they can undergo remodeling by early life events. Researchers have studied people who have had documented episodes of severe emotional stress in childhood. Fifteen or 20 years after the episodes, they have found a different pattern in how components of the subjects' central nervous systems respond to stress compared to a control group.(21)
Q. How important is it to study fibromyalgia in the context of other conditions with similar or overlapping symptoms?
A. There is nothing wrong with studying one disease on its own, but you will not learn as much as when you study it in the context of overlapping conditions. Syndromes like fibromyalgia, chronic fatigue syndrome and Gulf War illnesses are different in many ways from other categories of clinical conditions. Their symptoms and diagnoses are not black and white. In population-based studies of pain, fatigue or insomnia, which are common symptoms of fibromyalgia, we find that some people have chronic, severe symptoms and others seldom have any symptoms, while the rest of us fall along the bell-shaped curve that connects these two extremes. (17)
In developing diagnostic criteria, you must arbitrarily draw a line somewhere in the bell-shaped curve and say that the right side is disease and the left side is normal. For example, with blood pressure we draw the line at 140/90 and are comfortable saying that higher than that is high blood pressure, and lower than that is normal. We can do this with some certainty because we have objective data showing that people with a sustained blood pressure of greater than 140/90 have a higher risk of developing a stroke or heart attack later in life. With syndromes like fibromyalgia, we have no objective data we can use to draw the line. Therefore, if you can look at these diseases in a broader sense-at how they overlap and at different parts of the continuum-then you can learn more than if you view them as dichotomous "yes or no" conditions.
Q. Do health care practitioners understand enough about fibromyalgia to diagnose it accurately and to recommend effective treatments?
A. Not really. One big problem is that this category of illness has fallen into a black hole. Practicing physicians understand about "organic" illnesses such as cancer and heart disease and are taught a fair amount about psychiatric disorders like depression and schizophrenia. However, illnesses like fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome and migraine headache have fallen between the cracks. There are no laboratory tests or objective markers to diagnose these conditions, although most people acknowledge that they are not mood disorders and are not necessarily psychiatric conditions. Because of that, there is a lot of misunderstanding about these disorders. In addition, there is not a great deal to offer patients with these conditions, and the treatments are not as effective as we would like them to be.
Q. What kind of research is being conducted in the area of managing fibromyalgia?
A. Despite the number of people who have fibromyalgia and the amount of disability it causes, the interest from pharmaceutical companies in this condition has been extremely limited until very recently. There is no currently approved drug for fibromyalgia, and only a couple of companies are doing trials of drugs that could potentially gain Food and Drug Administration approval for fibromyalgia. Drug companies historically have been reluctant to enter this field because it is so nebulous and they are not sure what the FDA would consider to be the basis for approving a drug-what symptoms would have to get better and by how much.
Studying fibromyalgia is not like studying rheumatoid arthritis-you cannot check lab work or look at an X-ray and clearly know when a drug is working or not. The other broad category of treatment research is in non pharmacologic therapies. The two areas that have been best studied are exercise, especially aerobic exercise, and cognitive-behavioral therapy, which teaches people what they can do to control their illness better.(23) A third area of non pharmacologic therapies is complementary and alternative therapies, which are used frequently to treat fibromyalgia. Some of these therapies, like acupuncture, have been reasonably well-studied and others have received virtually no study but people use them nonetheless.
Behavioral Medicine Puts Mind Over Matter
Taking care of the mind may be a good bet for people facing the chronic pain, fatigue and other symptoms of fibromyalgia syndrome, say behavioral medicine experts like Joan E. Broderick, Ph.D., assistant professor of psychiatry and behavioral sciences at the State University of New York at Stony Brook.
Broderick, a clinical psychologist who has a special interest in fibromyalgia and rheumatological disorders, notes that there is no cure and no adequate medical treatment for fibromyalgia. However, mind-body techniques such as relaxation exercises and meditation show promise for those confronting the syndrome's sometime debilitating symptoms.(5)
Today's medical model tends to focus on biological disease status-that which can be detected through blood tests, X-rays and MRIs-says Broderick. In contrast, behavioral medicine, also known as mind-body medicine, approaches the person from an "illness" point of view (5). And, unlike psychiatry, which focuses on treating mental illness, behavioral medicine offers psychosocial interventions to help prevent and treat medical illness.(5)
"Mind-body medicine takes a very broad view of the individual and his or her experience of the illness," Broderick explains. "Our philosophical point of view is that what's going on in the body affects the mind, and what's going on in the mind affects the body. If you're depressed, frustrated, tired, angry or scared, that can have an impact on pain, for example."
She adds that mind-body techniques, many of which fall under the umbrella of cognitive-behavioral therapy, are designed "to have the person gain some voluntary control over what would otherwise be viewed as involuntary responses." In addition to altering the body's physiological response to stress and arousal, mind-body medicine addresses social support issues and helps people strike a better balance between the stress of daily tasks and leisure activities.
Broderick has found that people with fibromyalgia tend to "drift farther and farther away from engaging in pleasurable activities-seeing friends, going to the movies, gardening, window shopping-all of the things that in their healthy state of being gave them pleasure and balanced out the laundry, shopping, cooking, work and child care."
Mind-body medicine applies knowledge about motivation, learning and behavior change to promote "a more normal, healthier balance." Techniques include education, examination of one's attitudes, stress management, relaxation exercises, meditation, guided imagery and biofeedback as well as exploration of social and family relationships and improved communication skills.
Although it focuses on the psychosocial aspects of a person's well-being, this approach is viewed as an adjunct, not an alternative to conventional medical care.
Broderick is convinced that mind-body medicine is here to stay and will gain wider acceptance in the future. A number of studies have shown positive effects of mind-body medicine for people with fibromyalgia, (5, 9, 11) and the Arthritis Foundation has adapted its well-established, community-based Arthritis Self-Help Course into a similar fibromyalgia self-help course that incorporates cognitive-behavioral strategies.
"As time goes on, there is going to be increasing awareness of these interventions," she says. "We are talking about fibromyalgia, but we could be talking about any chronic illness because behavioral medicine is a general approach toward maintaining a healthy body and mind that is applicable across the board."
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The Center for the Advancement of Health is an independent nonprofit organization that promotes greater recognition of how psychological, social, behavioral, economic and environmental factors influence health and illness. The Center advocates the highest quality research and communicates it to the medical community and the public. The fundamental aim of the Center is to translate into policy and practice the growing body of evidence that can lead to the improvement and maintenance of the health of individuals and the public. The Center was founded by the John D. and Catherine T. MacArthur Foundation and the Nathan Cummings Foundation, which continue to provide core funding. Funding for this series was provided by the Robert Wood Johnson Foundation.
© Copyright 2001, Center for the Advancement of Health. Originally published as: Facts of Life: Issue Briefings for Health Reporters (Vol. 6, No. 8).