Fibromyalgia

ALSO KNOWN AS: Fibromyalgia syndrome

ANATOMY OR SYSTEM AFFECTED: Brain, head, muscles, musculoskeletal system, nerves, nervous system, psychic-emotional system

DEFINITION: A connective, soft tissue disease involving chronic, spontaneous, and widespread musculoskeletal pain, as well as recurrent fatigue and sleep disturbance.

CAUSES: Unknown; possibly injury or trauma to central nervous system, changes in muscle and connective tissue metabolism, or infectious agent

SYMPTOMS: Severe muscle pain; joint and muscle stiffness; tender points in knee, hips, spine, shoulders, and neck; fatigue; weakness; sometimes concurrent irritable bowel syndrome (IBS) and migraine or tension headaches

DURATION: Chronic with acute episodes

TREATMENTS: Alleviation of symptoms through medications, physical therapy, massage therapy, acupuncture, behavioral therapy

Causes and Symptoms

The cause of fibromyalgia is unknown. Some researchers believe that an injury or trauma to the central nervous system causes the disorder. Other researchers believe that changes in muscle and connective tissue metabolism produce decreased blood flow, beginning a pathological cycle of weakness, fatigue, and decreased strength that eventually results in the full-blown syndrome. Still others believe that an as-yet-undiscovered virus or infectious agent attacks people who are naturally susceptible to the infection, who then develop the syndrome.

The most salient feature of fibromyalgia syndrome is pain. Described by sufferers as “having no boundaries,” the pain is characteristically variable. The same sufferer experiences pain ranging from deep muscle aching to throbbing, stabbing, or shooting pains to a burning sensation that has been called “acid running through blood vessels.” The pain frequently causes joint and muscle stiffness. Pain and stiffness may be worse in the morning and may be more intense in the joints and muscle groups that are used more often. Patients may have tender points, as in the knee, hips, spine, shoulders, and neck. There are typically eighteen potential tender points, and at least eleven must be painful for a diagnosis of fibromyalgia to be made.

Sufferers also experience fatigue and weakness, ranging from mild to debilitating. Patients liken the fatigue to having their arms and legs tied to concrete, and many feel that they are living in a kind of mental fog, unable to focus or concentrate. Between 40 and 70 percent of patients also have some variation of irritable bowel syndrome (IBS): frequent abdominal cramping, nausea, and chronic constipation or diarrhea. About half of all sufferers also experience concurrent migraine or tension headaches. The condition is often mental as well as physical, as sufferers may also suffer from major depressive disorder and anxiety.

Less common, but readily found, are a constellation of symptoms that, in order of prevalence, include jaw, face, and head pain, which is easily misdiagnosed as temporomandibular joint syndrome (TMJ); hypersensitivities to odors, bright lights, and even fibromyalgia medications; painful menstruation; memory problems; and muscle twitching. Weather (particularly exposure to cold), normal hormonal fluctuation, stress, anxiety, depression, and physical exertion can aggravate fibromyalgia and produce flare-ups.

Treatment and Therapy

Because the cause of fibromyalgia is unknown, only its symptoms can be addressed. The treatment plan must be individualized and flexible, and it is considered long-term management. Rigid, stereotyped approaches can be worse than no management at all.

Because difficulty sleeping and pain can be both contributors to and outcomes of fibromyalgia, traditional treatment approaches focus on improving quality of sleep and reducing pain. Physicians commonly prescribe medications that increase the neurotransmitters serotonin and norepinephrine, which modulate sleep, pain, and the immune system. These medications may be prescribed in low doses; they benefit one-third to one-half of patients. Alone or in combination, these medicines improve sleep staging, elevate mood, and relax overtense, stiff, and spasm-prone muscle groups. Three other medications, Lyrica (pregabalin), Cymbalta (duloxetine), and Savella (milnacipran), have been specifically approved to treat fibromyalgia.

More comprehensive are approaches that use medications as part of a well-rounded treatment plan. Physical therapy, massage therapy, acupuncture, and behavioral health are other treatment options. Physical therapy and aerobic exercises such as swimming and walking reduce muscle tenderness and pain while improving muscle conditioning and fitness. Because of fibromyalgia sufferers’ sensitivity to cold and frequent stiffness, applied heat and therapeutic massage can render short-term relief. Though acupuncture is less well studied, anecdotal accounts claim its effectiveness, making it a sought-after therapy. Psychological counseling, or psychotherapy, can be effective for patients as well.

Perspective and Prospects

Until the 1990s, fibromyalgia syndrome—or fibrositis, as it was then more often called—was not widely accepted by primary care specialists as a legitimate condition. Difficult to diagnose, it was often mistaken as chronic fatigue syndrome (itself a condition not widely recognized in primary care medicine), a sort of chronic pain syndrome, or some condition that was completely psychosomatic (that is, originating in the mind rather than the body). Fibromyalgia syndrome was often thought of as a “garbage can diagnosis”: a little bit of everything, but not a real syndrome that could be treated. Sufferers had difficulty finding sympathetic medical help and were often at odds with family, friends, and coworkers who misattributed the causes of this connective, soft tissue disease whose existence could not be proven.

Advances in rheumatological research and the American College of Rheumatology’s establishment of diagnostic criteria for fibromyalgia have made it a legitimate medical condition for which treatment can be sought. Previously, those with fibromyalgia often suffered from this painful, fatiguing condition and felt blamed for causing it—or worse, for “making it up.” Even today, the Fibromyalgia Network, a grassroots informational clearinghouse, underscores research that proves fibromyalgia syndrome is real.

Despite differing theories about the cause of fibromyalgia, ongoing research has produced some results that all investigators consider reliable. This syndrome seems to involve a relationship among the nervous system, the endocrine system, and sleep. When sleep electroencephalograms (EEGs) for patients known to have fibromyalgia are compared with those for nonpatient subjects, disturbances in the non-rapid eye movement (non-REM) stages become evident. There are five well-known and easily recognized stages of sleep: four non-REM stages and then an REM stage. Most people effortlessly progress through non-REM and REM stages. When they reach stage 4, a non-REM stage, they have reached sleep at its deepest. This is the stage during which tissue repair, antibody production, and possibly neurotransmitter regulation occur. Fibromyalgia EEGs show that these patients revert to stage 2 after stage 3, without having reached stage 4. Specialists refer to this sleep disorder as the alpha-EEG anomaly.

This EEG finding corresponds directly with fibromyalgia patients’ anecdotal reports that they frequently do not feel rested or refreshed after a night’s sleep. This result also contributes to an understanding of why sufferers are fatigued so often. The disturbance of non-REM sleep helps to produce the symptoms of insufficient sleep: tiredness, reduced mental acuity, irritability, and autoimmune susceptibilities. The various stages of sleep also have corresponding hormonal activity, with different hormones and different levels released during each. Stages 3 and 4 are when growth hormones, including insulin growth factor (IGF), are primarily released. Fibromyalgia patients have low IGF levels.

A few other characteristic findings in these patients are not related to sleep. First, the neurotransmitter cerebrospinal fluid P (CSF P), also called substance P, is found in fibromyalgia patients at three times the normal level. Significantly, CSF P is associated with enhanced pain perception. Second, sufferers have low cortisol levels, suggesting that the hypopituitary-adrenal axis is adversely altered. Among much else, this axis mediates the fight-or-flight response and relaxation. Third, using an office procedure called tilt table testing, fibromyalgia symptoms can be provoked, accompanied by a rapid lowering of blood pressure in those with fibromyalgia but not in those without the disease. These findings all provide evidence that problems in the autonomic and endocrine systems cause fibromyalgia. What would set these problems into motion in the first place, however, is unknown, although many patients have experienced significant physical and/or psychological trauma before any syndrome-specific symptoms began.

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