A close look at this mysterious and debilitating condition.
Fibromyalgia is a complex, chronic, disabling disease that causes widespread pain and fatigue, as well as a variety of other symptoms. The term fibromyalgia is derived from "fibro," meaning fibrous tissues, "my," meaning muscles, and "algia" meaning pain. Fibromyalgia (also known as fibrositis or fibromyositis) is frequently labeled a syndrome, since it includes a group of conditions that usually occur together. It has also been nicknamed the "invisible disability" or the "irritable everything" syndrome.
Prevalence and Population
Between 3 million and 6 million U.S. residents are affected by fibromyalgia.1-5 This translates to approximately 2% of the general population, 2% of all patients seen in general practice settings, and 10% to 25% of patients seen in rheumatology settings.4-7 Ninety percent of all fibromyalgia patients are women between 30 and 50 years old, and the syndrome has a peak incidence around age 35.1,2,4,6
When fibromyalgia occurs in children, sleep disorders and diffuse pain are more common, and fewer tender points are identified.1 Elderly people can also be affected by fibromyalgia. An autosomal-dominant genetic predisposition may be the culprit in many cases.4 Studies report that 28% of children with mothers who have fibromyalgia also develop it, with close-knit families reporting more severe cases.1
Physical or emotional traumas, such as viruses, accidents, abuse or depression, can be triggers of fibromyalgia. One study documented a relationship between cervical spine injury and onset of fibromyalgia, with occurrence 13 times more likely after neck injury compared with injury to the lower extremities.7 The role of subclinical hypothyroidism has also been explored as a possible cause.
Although the exact pathogenesis and pathophysiologic mechanism of fibromyalgia are unclear, various abnormalities have been identified. These alterations are categorized as sleep, muscle, neuroendocrine, neurotransmitter and cerebral blood flow abnormalities.
Sleep Alterations: In fibromyalgia, the restorative fourth stage of sleep does not occur properly. During this period in an unaffected person, muscles repair themselves from the microtrauma of daily activity. Rapid alpha-wave intrusion occurs during the slower delta wave, deep-sleep period and is visible on electroencephalogram. The amino acid tryptophan, the precursor of serotonin, is an important neurotransmitter in this stage and in inhibiting pain pathways. Serotonin and tryptophan levels are low in patients with fibromyalgia.
Muscle Alterations: Scientists have observed alterations in muscle fibers, reduced high-energy phosphate levels and structural changes in patients with fibromyalgia. These abnormalities suggest abnormal muscle metabolism, but could be a result of deconditioning. Muscle hypoxia from decreased blood flow and decreased oxygen, particularly 1 to 2 days after exercise, may be an indirect cause of muscle pain in fibromyalgia.
Neuroendocrine and Neurotransmitter Alterations: Scientists have also documented neuroendocrine system abnormalities in several neurotransmitters, such as calcitonin-gene-related peptide, noradrenaline, endorphins, dopamine, histamine, somatomedin C, substance P, growth hormone, cortisol, serotonin, and GABA. Impaired function of the hypothalamic-pituitary-adrenal axis may relate to the abnormalities.
Additionally, circadian rhythms of these and other chemicals are blunted, resulting in a constant level of sympathetic activity and diminished response to stressors in the mechanisms that would adjust the release of chemicals. This leads to a stress-associated syndrome in which the sympathetic nervous system and the autonomic nervous system are dysfunctional.
One of these chemicals, Somatomedin C, is a mediator of growth hormone activity, which leads to normal body homeostasis. When the release of growth hormone by the brain is deficient, the liver's release of an insulin-like growth factor is abnormal. This affects muscle repair and may be secondary to sleep abnormality, since growth hormone secretion occurs in deep sleep.
Cerebral Alterations: Arnold-Chiari malformation (Chiari I) is a result of the smallest herniations of an otherwise normal hindbrain.8 The cerebral tonsils normally are round, but often elongate as they protrude down the spinal canal. Not all patients have this classic sign of deeply herniated tonsils, which is visible with magnetic resonance imaging. This malformation can cause spinal cord compression, cervical myelopathy and obstruct the flow of inhibitory mediators down into the spinal cord and of substance P up into the brain. Thirty percent of fibromyalgia patients may benefit from surgery to correct the cerebral tonsils.2 Substance P levels are higher in patients with this type of malformation. Higher than normal levels of substance P, a potent vasoactive peptide, appear to be involved in pain, temperature and touch signals.
The most distinguishing symptom in fibromyalgia is pain. It occurs in anatomically defined musculoskeletal tender points where muscles attach to bones or ligaments, in the tendons, or at the bursae around the joints. The pain of fibromyalgia feels similar to the pain of arthritis. No deformity or deterioration is present in joints and soft tissue, and no inflammatory signs-redness, swelling or heat-are present.
Fibromyalgia pain may occur in areas outside the typical diagnostic areas. Pain is most pronounced in the axial skeleton, shoulders and hips. Typically, it originates in one area, such as the neck or shoulders, and radiates outward. Some degree of pain is usually present at all times in some part of the body (not always the same area), and the typical patient describes it as "exhausting." Pain varies depending on the time of day, activity, weather and stress. Muscle spasm can accompany the pain.
Fibromyalgia pain is chronic, lasting more than 3 months. It waxes and wanes and changes locations. It is usually more severe in the areas used most. The quality of the pain can be described as burning, radiating or aching. Fibromyalgia pain is more intense after disturbed sleep and for 1 to 2 days after increased exercise or activity.
The second most common complaint in fibromyalgia is fatigue, which can be mild to exhausting and flu-like. The fatigue associated with fibromyalgia may be more debilitating than the pain. Fatigue may occur all day long, or late in the day. By the end of the day, the patient may be exhausted. Post-exertional fatigue lasts for 1 to 2 days after exercise.
There is no specific treatment or cure for fibromyalgia, but steps can be taken to partially control a patient's symptoms and improve quality of life. All symptoms and comorbidities must be addressed on an individualized basis. Therapy is lifelong.
The goals of treatment should be to reduce pain and increase functioning. To begin, determine current functional status, pain level, presence of associated syndromes, and previous management.
Building endurance should be a specific treatment goal. Advise the patient to start by getting out of bed no matter how tired she feels or how much it hurts. Aerobic exercise is the most effective treatment for fibromyalgia. Regular, balanced exercise is needed to help raise the pain threshold. Stretching should be performed before aerobic activity.
Advise patients to begin with slow, low-impact exercise for 3 to 5 minutes a day, and to continue at this level for eight to 12 workouts. Prepare the patient for setbacks and relapse. Despite these temporary states, continuing with regular exercise provides an improved sense of well-being, an increased feeling of control, increased muscle resistance to microtrauma, and improved muscle circulation.
A healthy diet and stress reduction are also integral to fibromyalgia management. In addition to these strategies, every fibromyalgia patient requires a restructuring of thinking to achieve a more positive attitude. This can be accomplished by learning about the body and how its responds to fibromyalgia. Pacing, taking breaks, saying "no" and taking extra rest when needed are strategies that every patient must work into her lifestyle. You and your fibromyalgia patients need to work together to identify and implement personal strategies to improve compliance.
Evaluate the patient's sleep habits and look for other sleep disorders that increase problems, such as sleep apnea and periodic limb movements. Encourage regular sleep habits, setting a regular time to go to sleep and to awake. Have the patient make her sleep as comfortable as possible. Patients should avoid exercise for 6 hours before bedtime, caffeine for 8 hours, and large meals for 4 hours. Performing relaxing activities for 2 hours before bedtime is also helpfuland presents a good opportunity to practice deep relaxation. Many patients find that waterbeds help them sleep, since they can be made soft or hard depending on preference. A heater can be added to the bed to heat the water, which can decrease muscle pain.
People with fibromyalgia say their entire lives are disrupted by pain and other symptoms that prevent them from maintaining their normal lifestyles, activities and relationships. They often develop poor self-images, and 30% to 40% stop working or change jobs because of the symptoms.1
The emotional issues associated with this chronic health problem add to the losses that fibromyalgia patients must absorb. These losses include: a loss of physical fitness and sense of a healthy self; loss of confidence in the ability to perform valued tasks and roles; loss of time to pursue pleasurable or fulfilling activities and engage in activity with others; loss of belief that the health system will help; and loss of future opportunities and professional advancement.
Additionally, fibromyalgia patients must cope with friends or family who have difficulty understanding the disabling nature of the condition because there are no outward symptomsthe patient still "looks good."
"We are not the way we used to be, but we can try to accept it." To reach this realization, patients need the support of occupational therapists, as well as education and support groups. Support groups help patients set realistic expectations, and provide a nonjudgmental forum for discussion and airing grievances. Support groups are also good sources for the most current medical findings about fibromyalgia.
Occupational therapists can make a difference in the lives of patients with fibromyalgia. By providing support, education and appropriate treatment, you will set patients on a course toward healthy day-to-day management of a lifelong condition.
Nancy Leake is a family nurse practitioner and writer in Fort Lauderdale, FL.
1. Leventhal LJ. Management of fibromyalgia. Ann Intern Med. 1999;131:850-858.
2. Russell IJ, Bennett RM, Clauw DJ. Fibromyalgia syndrome: diagnosis, pathophysiology, and treatment. The Journal of Musculoskeletal Medicine. 1999; June supplement: S1-S30.
3. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Fibromyalgia Research: Challenges and Opportunities. Bethesda, MD: National Institute of Arthritis and Musculoskeletal and Skin Diseases; 1999.
4. National Institute of Dental Research, Slavkin HC. Chronic Disabling Diseases and Disorders: The Challenges of Fibromyalgia. Bethesda, MD: National Institute of Dental Research; 1998.
5. Fibromyalgia Alliance of America. FMAA Brochure: Fibromyalgia Syndrome. Columbus, OH: 1999.
6. American College of Rheumatology. Fact Sheet. Fibromyalgia (Fibrositis). Atlanta, GA: American College of Rheumatology; 2000.
7. Fibromyalgia Association of Greater Washington. FMS Monograph: An Overview of the Fundamental Features of Fibromyalgia Syndrome. Woodbridge, VA: Fibromyalgia Association of Greater Washington; 1999.
8. Bradley LA, et al. Does Chiari Malformation Contribute to Fibromyalgia (FM) Symptoms? Salem, OR: National Fibromyalgia Research Association; 1997. Available at: http://www.teleport.com/~nfra.