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Fibromyalgia and the neuroscience nurse's role.

Abstract: Fibromyalgia is recognized among rheumatologists as one of the more common problems in patients with musculoskeletal pain. It is a chronic, nondegenerative, noninflammatory pain condition associated with musculoskeletal pain and stiffness, fatigue, nonrestorative sleep, alterations in cognitive functioning, and depression. Less common symptoms arise from a variety of body systems. Diagnosis is difficult; patients suffer, on average, for 5 years and spend thousands of dollars before receiving a diagnosis and proper management. The neuroscience nurse is in an excellent position to assist these patients from initial assessment and history taking to facilitating the patient to achieve optimal functioning by using measures to control their pain and associated symptoms.

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Fibromyalgia is a chronic, nondegenerative, noninflammatory pain condition (Starlanyl, 1999). The primary symptoms associated with the disorder are musculoskeletal pain and stiffness, fatigue, nonrestorative sleep, alterations in short-term memory, and depression. A wide variety of other symptoms is often present. This syndrome, historically unrecognized by the majority of the medical community, was legitimized when the American College of Rheumatology published definitive criteria recognizing fibromyalgia as a syndrome (Wolfe et al., 1990).

Its name arises from Latin roots: fibro (connective tissue fibers), my (muscle), al (pain), and gia (condition of) (Starlanyl & Copeland, 1996). In the past, this painful condition drew labels such as fibrositis, fibromyositis, or, in some cases, psychogenic rheumatism. Patients suffering with the condition were often passed from doctor to doctor, endured unnecessary surgery, and in many cases were told, "It's all in your head." On average, patients suffer for 5 years and spend thousands of dollars before being diagnosed (Starlanyl & Copeland). For example, one 58-year-old woman went to 13 doctors and three physical therapists spending more than $39,000 trying to find relief from her symptoms. She also endured five surgeries, one of which left her in more pain than she had experienced prior to the surgery (Starlanyl & Copeland). This all-too-common scenario often arises from a lack of knowledge of the condition and diagnosis, because common laboratory work and radiologic exams are usually normal.

Fibromyalgia is recognized, particularly among rheumatologists, as one of the more common problems in patients with musculoskeletal pain. The condition is seven times more common in women than in men (Wolfe, Ross, Anderson, Russell, & Herbert, 1995). Often, the patient has had symptoms for years and, in some instances, since childhood (Puttick, 2001). According to testimony reported to Congress in 1998, healthcare costs for a fibromyalgia patient average $2,274 annually, with more than $20 billion spent on fibromyalgia therapies annually (Thorson, 1998). To date, no geographical distinctions have been determined. The prevalence of fibromyalgia ranges from 2.1% of patients in family practice clinics to 20% in a rheumatology clinic (Giordano, Geraci, Santacroce, Mattii, Battisti, & Gennari, 1999). The occurrence of fibromyalgia increases with age, reaching 7% in the 60- to 79-year-old age group. Fibromyalgia is the second most common diagnosis in rheumatology clinics (Goldenberg, 1999). On an encouraging note, a reported $3.6 million has been made available to the National Institutes of Health and the National Institutes of Arthritis and Musculoskeletal and Skin Diseases for fibromyalgia research (Leake, 2001). This article describes the defining characteristics of the syndrome, the pathophysiology, medical and nursing management of common problems in daily living, employment challenges, support groups, and self-help strategies.

Characteristics of Fibromyalgia

The first step in managing any health problem is making a correct diagnosis and designing a plan for treatment. Until recently, correctly diagnosing fibromyalgia was impossible because there were no recognized criteria. Thus, the development of diagnostic criteria was historically significant. According to Backstrom and Rubin (1995), Smythe published a chapter in the early 1960s on nonarticular rheumatism in an arthritis textbook that spotlighted fibrositis and sparked early research on the mysterious syndrome. Working together, Moldofshy and Smythe investigated the relationship between the pain of fibrositis and altered sleep patterns. Moldofsky discovered an abnormal Stage 4 sleep pattern in people with fibrositis, and Smythe discovered a definite pattern of tender points in patients. Their work demonstrated the link between Stage 4 sleep alterations and the presence of the tender points commonly found in fibrositis. In 1980, it was recommended that the term fibrositis be dropped and the syndrome be named fibromyalgia, a term more reflective of the pain the patient experiences (Backstrom & Rubin).

In 1989, a group of 16 rheumatology researchers from Canada and the United States met to develop criteria for diagnosing fibromyalgia. The result of their work was the publication of the American College of Rheumatology's criteria for classifying fibromyalgia (Fig 1). Although the committee established a wide variety of symptoms common to the syndrome, widespread pain and tender points were the most common. In fact, these two factors were present in 100% of patients studied; therefore, they became the required findings for the diagnosis (Wolfe et al., 1990).

The typical pattern of tender points found on diagnosis is illustrated in Fig 2. To diagnose the condition, the patient's history must include the presence of pain in each quadrant of the body and, upon examination, pain in at least 11 of the 18 tender points shown in Fig 2. To correctly elicit the pain response, the examiner should exert an approximate force of 4 kg of digital pressure at each of the tender points. Often the patient is unaware of the pain prior to the examination; in-stead, he or she may have have experienced generalized pain, stiffness, and soreness in the area of the affected tender point (Wolfe et al.).

[FIGURE 2 OMITTED]

Aside from the primary symptoms of musculo-skeletal stiffness, pain and fatigue, nonrestorative sleep, alteration in short-term memory, and depression, patients with fibromyalgia experience other symptoms that can affect many systems. Approximately 70% report irritable bowel syndrome, headaches, and global anxiety (Hulme, 1995). Specific complaints associated with irritable bowel syndrome include alternating constipation and diarrhea, gas, and nausea. Headaches usually manifest as migraine or tension-type headaches that are not related to stress or muscle tension. Anxiety is often expressed as irritability or over-concern. In addition to these problems, almost 95% of patients report visual changes such as blurring or double vision and photophobia (Hulme). Approximately 50% of those with fibromyalgia have symptoms such as nondermatomal-related paresthesias; subjective feelings of swelling, particularly in the hands and feet; pelvic pain; mitral valve prolapse; and hypoglycemia. Other common neurological problems found in patients with fibromyalgia are Raynaud's phenomenon, characterized by cold hands and feet and color changes in the fingers and toes, temporomandibular dysfunction (TMD), and pain related to muscles and ligaments surrounding the temporomandibular joint. Less common symptoms are allergies, auditory and respiratory problems, dry eyes and mouth, vertigo, reflex changes, and clumsiness. Exacerbation of these symptoms commonly occurs with decreased sleep, exposure to heat, cold, and increased humidity, stress, anxiety, fatigue, and sudden changes in barometric pressure (Hulme, 1995).

Pathophysiology Associated with Fibromyalgia

Currently, the mechanisms in the neuroendocrine system that cause fibromyalgia are unknown. However, research on biochemical and neurological bases for the condition has progressed, and the role the central nervous system plays in the condition is better understood than earlier. Studies have demonstrated a familial link in fibromyalgia. Findings from these studies suggest that the mode of transmission to succeeding generations may be related to a dominant autosomal trait (Buskila, Neumann, Hazanov, & Carmi, 1996).

A number of theories of fibromyalgia's etiology, some of which are controversial, are being investigated. The aim of the research is to discover the role that the nervous system plays in causing the wide array of symptoms. The primary theory associated with the pathophysiology of fibromyalgia involves abnormalities of neurotransmitters and disturbances in endocrine function (Leventhal, 1999). Specifically, it is thought that the origin of the pain associated with fibromyalgia is not due to an intrinsic or structural abnormality of the muscle, although low oxygen levels, a reduction in high-energy phosphate compounds (ATP), and a low capacity for exercise are present in affected muscles (Leventhal). It is postulated that activation of the pain pathways in the nervous system can interfere with the control and functioning of other major body systems such as the gastrointestinal tract, the heart, lungs, and other organs, which can produce diverse symptoms.

Changes in levels of the neuropeptides, serotonin, and substance P are commonly found in patients with fibromyalgia. Substance P is a major neurotransmitter in the pain system, and serotonin regulates pain transmission in the central nervous system. Research has shown that patients with fibromyalgia have approximately three times the normal level of substance P in cerebrospinal fluid and low levels of serotonin. Serotonin levels are correlated with the severity of pain that fibromyalgia patients experience (Fransen & Russell, 1996). These changes in neuropeptides may explain the pain felt by patients in the absence of a pathological cause in the musculoskeletal system. The increased level of substance P at the end terminals of pain fibers can produce reactions in surrounding tissues characterized by dilation of blood vessels, shifts in fluids, and accumulations of plasma proteins. These physiological changes may underlie the occurrence of skin sensitivities, rashes, and Raynaud's phenomenon. They may also cause the sensation of swelling in the extremities.

Twenty-four-hour levels of free cortisone in urine are low in patients with fibromyalgia, compared with the general population. Patients with fibromyalgia also display abnormal alpha-delta sleep on EEG. The normal sleep cycle includes Stages 1, 2, 3, and 4 and REM sleep in a defined pattern during the night. Completion of normal sleep cycles allows the individual to awaken rested and refreshed. During sleep, the brain wave patterns of patients with fibromyalgia display an intrusion of alpha waves on the normal delta-wave pattern associated with Stage 4 sleep (i.e., deep sleep). This results in a sleep disturbance associated with frequent periods of wakefulness and difficulty returning to sleep. Serotonin, a neurotransmitter that regulates Stage 4 sleep, is deficient in the blood serum and platelets of affected patients and is thought to be associated with the disrupted sleep pattern.

During Stage 4 sleep, the hypothalamic-pituitary-liver-adrenal axis regulates the secretion of human growth hormone (which regulates insulin-like growth factor (IGF1) and dehydroepiandrosterone (DHEAS) by the adrenal gland. Together, these hormones are responsible for regulating the growth and repair of muscle fibers injured during the course of daffy living. Studies have found DHEAS levels lower than normal in patients with fibromyalgia, and this finding may help to explain some of the fatigue, stiffness, and muscle soreness associated with the syndrome (Fransen & Russell, 1996).

In addition to the biochemical findings in patients with fibromyalgia, studies using advanced scanning techniques to trace blood flow through the brain have found abnormal changes in the areas of the caudate nucleus and limbic system. Specifically, these studies report that fibromyalgia patients have a decreased thalamic and caudate blood flow compared to healthy controls on SPECT (single-photon-emission-computed tomography) imaging (Bennett, 1999a). The cause of the decreased blood flow is undetermined. However, changes in other neurochemical regulators such as norepinephrine, epinephrine, and serotonin may contribute to the decreased blood flow. There also is research suggesting that the autonomic nervous system may play a role in clinical manifestations, especially fatigue and sensations of light-headedness (Fransen & Russell, 1996).

The symptoms of fibromyalgia may arise from multiple body systems and are often characterized by periods of exacerbation or "flare-ups." The most common symptoms are listed in Table 1, along with other symptoms associated with the syndrome.

Fibromyalgia Pain

The most common symptom that causes a person to seek medical attention is chronic pain. Chronic pain is not simply acute pain that "has gone on too long." The extent of tissue pathology and the degree of pain do not always correlate; also, the pain does not always exhibit boundaries like acute pain does (Bennett, 1999b). The type of pain that fibromyalgia patients describe includes a constant ache, nag, or throbbing sensation typically located in the head, neck, shoulders, low back, and hips. The location of pain may vary, and in some women with large breasts, pain is experienced in the chest. The pain is characterized by a pattern in which pain begins in one location such as the hip, with other areas affected over time. The pain also is characterized by migration, with tender spots occurring in several sites one day and in others the next. The patient complains of pain not only in the muscles but also in areas associated with ligaments, tendons, and bursa. Many times the doctor diagnoses the problem as bursitis, tendonitis, or costochondritis. These diagnoses may mask the correct diagnosis and lead to years of inappropriate or inadequate treatment, resulting in repeated clinic visits and major medical costs (Pellegrino, 1993).

Along with the sensation of "hurting all over," patients experience other pain-related symptoms. These usually manifest as joint stiffness, nondermatomal paresthesias, and, in some instances, radiation of pain. Often the patient cannot point to an exact location of the pain; however, when pressure is applied to tender points, the typical pain response is exhibited. The major challenge facing fibromyalgia patients is learning to cope with pain, often on a daily basis. The key concept in coping with the pain is "pain management," not elimination of the pain.

Medical Management of Pain

Usually, the medical management of fibromyalgia pain involves two distinct methods of treatment: prescription medications to manage symptoms and non-drug therapy or alternative therapies or remedies. Drug therapy is targeted toward controlling symptoms associated with pain, sleep disturbances, and depression. Vitamin and mineral supplements also are usually recommended. Additional drugs, particularly hormone supplements, may be prescribed when growth or thyroid hormone levels are insufficient. Antidepressants and selective serotonin reuptake inhibitors (SSRIs) are commonly used to treat fibromyalgia. However, dosages prescribed must be individualized, given differences in metabolism and absorption rates.

Drug therapy. Many of the medications used to treat fibromyalgia work by affecting neurotransmitters. Each neurotransmitter has a specific receptor site and bridges the gap between two cells (Starlanyl & Copeland, 1996). The main drug types used to relieve the pain associated with fibromyalgia are non-narcotic analgesics, nonsteroidal antiinflammatory drugs (NSAIDs), and muscle relaxants. Along with these drugs, antidepressants and serotonin-mediating medications have proven helpful in relieving pain, regulating sleep, and preventing muscle stiffness. Some of the more commonly prescribed drugs, their dosages, side effects, and nursing indications are found in Table 2.

Because of the chronic nature of pain in fibromyalgia, there is controversy about the use of narcotics for pain. The most serious side effect of narcotics is addiction; therefore, alternative analgesics are used. NSAIDs help take the edge off pain in flare-ups associated with excessive physical exertion or strain and with inflammation of the bursas such as tendonitis or bursitis. Note, however, that the use of NSAIDs also is controversial, and several authors say they are not effective because fibromyalgia is a noninflammatory process (Millea & Holloway; 2000). Also, because of their effect on the gastrointestinal muscosa, NSAIDs should be used with caution and carefully monitored, particularly in older adults (Bennett & McCain, 1995). A distinction between treatment of symptoms and treatment of the condition must be made here. Because of their serious side effects, corticosteroids generally should be avoided once the diagnosis of fibromyalgia is established. Some physicians perform a tender, or trigger point, injection into a locally affected muscle site using a combination of corticosteroid and anesthetic. This may offer temporary relief, but when there is widespread involvement, it is not practical because of the pain involved and the cost of the treatment (Fransen & Russell, 1996). A common side effect of muscle relaxants is drowsiness; therefore, safety precautions should be taken, and driving should be avoided when these are prescribed. These drugs also should be monitored because addiction can occur.

Another controversial treatment for fibromyalgia is the use of growth hormone. Bennett, Clark, and Walczyk (1998), on the assumption that decreased growth hormone secretion in patients with fibromyalgia increases their symptoms, performed a double-blind, placebo-controlled study using growth hormone and found significant improvement in symptoms after 9 months. However, because growth hormone therapy can cost more than $1,500 a month, its use is prohibitive for a chronic syndrome such as fibromyalgia. In recent years, some healthcare providers have prescribed guaifenesin, a common ingredient in cough medicine, for fibromyalgia. The belief behind this use is that guaifenesin aids in the excretion of calcium phosphate in muscles, tendons, and other tissue. In a 1-year, placebo-controlled drug trial, however, patients treated with guaifenesin and those who received the placebo showed no differences in symptoms (Bennett, 1996).

Alternative therapies. Alternative nondrug therapies affect each individual with fibromyalgia differently; however, most patients find that these therapies have a positive effect on symptom management. Physical and occupational therapy are directed at decreasing pain, improving sleep, and increasing individuals' ability to perform activities of daily living and function in their multiple roles. Among the modalities prescribed are heat, stretching, and ultrasound. Exercise, particularly of the aerobic type, is considered a critical form of therapy because it improves body conditioning, stimulates production of endorphins, and improves Stage 4 sleep (Backstrom & Rubin, 1995). A supervised exercise program is recommended at the beginning, with small periods of exercise that are increased as tolerance improves. In patients with joint pain, exercise such as swimming or water aerobics in a warm pool may maximize pain relief and relaxation. Sitting in a hot tub before and after exercise also is a good idea.

Other forms of alternative therapy include massage, manipulation therapies, and acupuncture or acupressure. Many patients find massage especially beneficial because it promotes relaxation, improves circulation and lymph flow, increases endorphins with pressure point manipulation, and can relieve myofascial pain through release techniques. Massage should be light, with gradual increase in pressure. Deep massage should be avoided because it can increase pain instead of relieving it. Manipulation of the affected body area is usually performed by osteopaths or chiropractors. This treatment modality improves blood and lymph flow and nerve conduction. The goal of the therapy is to promote healing by improving general health. Acupuncture and acupressure are forms of Chinese medicine that involve stimulation through pressure or the insertion of tiny needles into certain points on the body. The purpose of these techniques is to increase the release of neurotransmitters, endorphins, and enkephalins, the body's natural pain relievers. Other forms of alternative therapies such as homeopathic remedies, magnetic therapy, biofeedback training, transcutaneous electrical nerve stimulators (TENs), and psychotherapy also have been employed.

Nursing Interventions in Pain Relief

The role of the neuroscience nurse or advanced practice nurse is directed toward helping the patient develop a plan for coping with pain. Chronic pain can cause depression, fatigue, appetite changes, concentration problems, and, ultimately withdrawal from life. The first step in this process is to carefully assess the patient's pain patterns through a detailed pain history and physical assessment. When checking the patient's tender points, refer to Fig 1 to pinpoint the exact location. The amount of pressure to apply (approximately 4 kg) can best be described as the amount of pressure necessary to show blanching in the thumbnail. It is important to note all tender points and their locations upon manipulation, because a correct diagnosis requires that 11 of 18 points are involved and pain is experienced in the four quadrants of the body. After pain patterns have been assessed, develop a plan with the patient for coping with the pain on a daily basis.

One of the most important nursing roles is teaching the patient about medication use and side effects. It is important to stress the importance of dealing with one pharmacy so the pharmacist is aware of any changes in dosages or potential interactions of medications that might be given by another healthcare provider. Also, it is important to help the patient develop a tracking system as a reminder to take prescribed medications. Common practices to control pain should be included in the teaching plan and during follow-up. Explaining and reinforcing physical and occupational therapy plans are helpful. Patients should be taught how to use "comfort measures," which include relaxation techniques, positioning for pain relief, and appropriate use of heat and cold treatments such as microwaveable gel packs, heated mattress pads, and application of ice packs to symptomatic areas when cold is more effective than heat. Increasing the patient's social and psychological support systems also should be included, became adequate support is essential to coping with chronic pain.

As in other chronic pain conditions, fatigue is usually an accompanying symptom. This is particularly true because of the disruptive sleep pattern that characterizes fibromyalgia.

Sleep Disturbance

Most of us think of sleep as "just resting"; however, this is not true. Even in our sleep, continual communication occurs between the mind and body at a rate difficult to grasp (Alvarez, 1995). Sleep disturbance is a classic symptom of fibromyalgia. Patients describe their sleep as feeling like they are "half awake and half asleep." They wake often and many times have great difficulty going back to sleep. Even if they report 8-10 hours of continuous sleep, they wake up feeling tired (Bennett, 2001). These disturbed sleep patterns can be attributed to a specific EEG abnormality known as alpha-delta sleep. In this pattern, the patient is in Stage 4 sleep (delta waves) when an alpha wave (normally generated during waking hours) suddenly occurs, causing the patient to awaken. Approximately 80% of those with fibromyalgia experience this sleep disturbance, which is believed to be caused by a neurochemical imbalance. Among people with fibromyalgia, 40% spend 60% of their time asleep in the alpha-delta abnormal sleep pattern, compared with 25% of the general population (Fransen & Russell, 1996). This lack of a normal sleep pattern results in inadequate muscle repair and body tissue renewal (Fransen & Russell).

Medical Management of Sleep Disturbance

The alpha-delta sleep disturbance is a difficult problem to manage medically because there is no perfect medication to completely normalize sleep patterns. Drug therapy is the primary medical treatment. Most often the physician orders drugs that fall within two categories: muscle relaxants and antidepressants. Muscle relaxants are used to improve the quality of sleep and decrease the pain and fatigue that contribute to sleep disturbance. The purpose of antidepressants, which are given in smaller doses than commonly used to treat depression, is to reduce the alpha-wave intrusions in Stage 4 sleep. They also inhibit the reuptake of pain neurochemical transmitters, norepinephrine and serotonin, and increase the body's natural response by increasing endorphins. The more commonly prescribed muscle relaxants and antidepressants for treating sleep disturbances and pain are listed in Table 2.

One key to medically managing sleep disturbance and pain is to adjust the dosage of muscle relaxants and antidepressants during symptom flare-ups. For example, sleep medication may need to be increased during winter or hot humid months, premenstrually each month, and during periods of intense stress. Medications also may need to be increased when physical exertion is excessive.

Nursing Interventions in Sleep Disturbances

The nurse plays a key role in helping the patient to cope with altered sleep patterns and the fatigue and exhaustion that result. The first step in nursing management is to do a thorough history and review of all remedies the patient is using to deal with sleep problems, including prescriptions. The patient should be taught the precautions and potential side effects associated with each drug. The following specific tips should be included during the drug teaching session:

* Initiate new drugs or a change in dosage on the weekends or when not working, so that responses such as drowsiness or feelings of oversedation do not impair critical thinking or motor skills.

* Move the timing of the medication to early in the evening if feelings of oversedation persist.

* Minimize side effects by combining small doses of muscle relaxants and antidepressants.

* Do not alter the dose, stop taking the drug, or experiment with other prescriptions without consulting a healthcare provider

* Do not mix alcohol or other drugs with those prescribed, without consulting the healthcare provider

Other measures to increase restorative sleep should be included in the teaching plan. Specific measures to share with patients to help them establish a routine and to allow their minds to wind down and body to relax prior to bedtime include the following:

* Eat an early light dinner to keep the digestive process from occurring at or around bedtime.

* Have a hot cup of herb tea or warm milk; avoid all liquids with stimulants such as coffee or colas.

* Establish a pattern of relaxation exercises; initiate diaphragmatic breathing and relax from head to toe before sleep. Avoid aerobic or strenuous exercise before bedtime because this will stimulate adrenaline production, which may interfere with sleep.

* Take a hot bath or shower before bedtime to promote relaxation and sleep.

* Wear comfortable nonbinding bed clothing, including socks, if your feet tend to get cold.

* Use the bedroom only for sleep. Do not use the bedroom for other activities such as exercise, office work, or watching television. Reading a magazine or book will often induce feelings of drowsiness and relaxation.

* Establish regular sleeping and waking times. Any major changes in schedule should be done gradually to allow your body to adjust.

* Use sleeping aids such as relaxation tapes to allow your mind to relax.

* Experiment with various types of pillows to support your body and reduce muscle strain.

* If you awaken during the night with many ideas on your mind, use a bedside tablet to write them down. Sometimes getting them on paper will clear your mind and allow you to go back to sleep.

Cognitive Impairment

Many patients with fibromyalgia report problems with concentration and short-term memory. The disruption of both of these cognitive functions increases with neurochemical abnormalities and sleep deprivation. The pain, fatigue, depression, and anxiety that characterize fibromyalgia negatively affect cognitive functioning and contribute to patients' difficulty in organizing their thinking and concentration. This is often described by patients as being "forgetful or fuzzy headed." Many patients fear they are developing Alzheimer's disease or they are suffering from the mental changes of old age. Specific difficulties are listed in Table 3.

Some centers across the country are conducting controlled trials employing cognitive-behavioral therapy (CBT). Sustained improvement has been found in levels of physical functioning. Note, however, that these trials were conducted in specialty centers. Also, the patients involved were not limited to fibromyalgia patients, but included those with chronic fatigue syndrome (Reid & Wessely; 1999). More research is being conducted, and this approach is thought to hold some promise.

Nursing Interventions in Cognitive Impairment

There are no specific drugs available to improve cognitive impairment. Some patients are using homeopathic remedies such as the much publicized ginkgo biloba and St. John's Wort. Should the nurse be asked about the usefulness of such remedies, it is important to remind patients that they are untested and in some cases have been thought to be associated with health problems such as hypertension and stroke. Thus, they should be used with great caution.

The neuroscience nurse has the opportunity during patient teaching sessions to help the patient develop effective compensatory mechanisms for the cognitive symptoms associated with fibromyalgia. Specific ways to instruct the patient to manage the problems of daily living include the following:

* Establish routines to conserve mental energy. This allows performance of repetitive tasks without taxing memory.

* Establish a reasonable daily schedule that can be accomplished without stress or overexertion (e.g., do not attempt to do all of the cleaning chores in one day).

* Be methodical (e.g., always put your car keys in the same place, always park your car [if possible] in the same vicinity).

* Make lists for regular activities (e.g., grocery shopping, daily tasks to be accomplished, errands).

* Take notes. Always keep paper and pencil near the telephone, on the desk, or in the car to record information you don't want to forget. For the more technologically inclined, using a personal electronic assistant can be helpful.

* Use a calendar to record dates, times, and places for meetings, appointments, and parties. It is also important to have your destination mapped out and directions on paper in the car before you leave for a trip.

* Use memory aids such as alarm clocks, timers, and pill counters to remember the time of events or medications.

* Use a tickler file at home and at work to keep reminders such as invitations, birthday cards to be mailed, or special event tickets and to file bills or other important papers that will require your attention at a specific time.

Other methods of managing materials and papers and filing items include using color coding or a symbol system to organize items according to topic, time of the year, or day of the week.

Depression

A common problem patients with fibromyalgia report is depression. As many as 45% experience major depression, compared to 10% of the general population (Bennett & McCain, 1995). The depression can be attributed to many things, including the sleep deprivation, pain, and fatigue commonly associated with the syndrome. Other variables include losses such as the ability to function in expected roles with the same drive and intensity, consistent problems of misdiagnosis, and lifestyle changes due to disability, particularly during flare-ups.

Medical Management of Depression

The most common medical approach to the symptoms of depression is drug therapy (Table 2). Some individuals also benefit from psychotherapy; counseling, and group support.

Nursing Interventions for Depression

Nurses can play a major role in assessing patients and helping them develop the coping skills needed to avoid depression. They can serve in an advisory or counseling role to help patients identify coping strategies, support systems, and community resources to alleviate identified causes of the depression. For example, if a patient is depressed because he or she can no longer work in the same job, a referral to vocational rehabilitation can be made. If the patient is severely disabled by the syndrome, the nurse can provide the guidance needed to move a request for disability benefits through the system.

To avoid overwhelming feelings of depression, the nurse can help patients create a list of activities that they have found helpful for coping in the past. These activities may need to be adapted to fit with the patient's current level of functioning. One of the most important roles the nurse can play is to give patients permission to self-manage their symptoms. For example, a person who has led an active, productive life may consider resting for short periods a form of laziness and find it difficult to pace activities. When the nurse points out rest is needed to avoid overexertion, which can contribute to further dysfunction, and insists that it is "OK" to rest, it can help relieve the patient's stress.

Employment Challenges

In a study conducted in Kansas, 17% of those diagnosed with fibromyalgia had to discontinue employment due to symptoms suffered from fibromyalgia. This study also found that 30% of people with the syndrome were forced to change jobs due to their symptoms. Ability on the job can be severely affected by cognitive impairment, fatigue, and inability to handle high-stress situations, repetitive tasks, or heavy lifting (Fransen & Russell, 1996). Often people struggle to continue working despite their symptoms because of financial obligations or the need to maintain the feelings of self-worth from job performance or both (Backstrom & Rubin, 1995). Another major incentive to continue employment is the maintenance of health insurance.

The Americans with Disabilities Act (ADA), passed in 1990, requires employers to make adjustments and accommodations for people with chronic illnesses and disabilities. Note that companies with fewer than 15 employees are exempt from this act. Also in accommodating disabilities, needed adjustments or accommodations have to be reasonable and cannot impose undue hardships on a company (www.usdoj.gov/crt/ada/adahom1.htm).

When interviewing for a job, patients often struggle with the decision of whether to make their fibromyalgia syndrome known to their prospective employer. The nurse is in a key position to help patients weigh the pros and cons of disclosing their condition. Some of the reasons to disclose include the following:

* Disclosure requires the employer to offer reasonable accommodations for the position.

* Failure to disclose the condition eliminates any legal grounds for complaint.

* Sharing your condition with an employer allows you to file for short- or long-term disability should it be needed.

Some concerns to consider when disclosing the condition include the following:

* When job changes are made, fibromyalgia will be considered a preexisting condition and may affect the patient's ability to obtain insurance coverage with a new company.

* Chronic illness is considered by many employers to be incongruent with job promotions and increased responsibility.

When considering working conditions, it is important that ergonomic measures be taken to avoid further stress and strain and exposure to injury. Breaks should be paced to allow for exercise and rest.

Support Groups and Self-Help Information

It has been only 11 years since fibromyalgia was established by the American College of Rheumatology as a legitimate condition with defined criteria, but self-help groups have long been in existence. Because there is no cure or well-defined treatment to eliminate the condition, support groups have led the way to improved diagnosis and symptom management through research and dissemination of information. These groups provide general support such as tips on coping, emotional support, and, in some instances, transportation to healthcare facilities. A list of the more important support groups can be found on the Fibromyalgia Network Web site (www.immunesupport.com). Information also can be obtained from other Internet sources.

Summary

Fibromyalgia can be a disabling syndrome, with the potential to greatly alter a person's life. At this time, there is no cure for the pain and fatigue, sleep deprivation, cognitive impairment, depression, and numerous other symptoms associated with this poorly understood condition. To maintain normal functioning, the patient must get adequate medical treatment to control symptoms and learn coping skills to manage the day-to-day tasks of daily living. The neuroscience nurse is a professional who can make a major contribution to helping the patient overcome the problems associated with this chronic illness.

Fig 1. 1990 Criteria for the classification of fibromyalgia

1. History of widespread pain

Definition: Pain is considered widespread when all of the following are present: pain in the left side of the body, pain in the right side of the body, pain above the waist, and pain below the waist. In addition, axial skeletal pain (cervical spine or anterior chest or thoracic spine or low back) must be present. In this definition, shoulder and buttock pain is considered as pain for each involved side. "Low back" pain is considered lower segment pain.

2. Pain in 11 of 18 tender point sites on digital palpation

Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 sites:

Occiput: Bilateral, at the suboccipital muscle insertions.

Low Cervical: Bilateral, at the anterior aspects of the intertransverse spaces at C5-C7.

Trapezius: Bilateral, at the midpoint of the upper border.

Supraspinatus: Bilateral, at origins, above the scapula spine near the medial border.

Second rib: Bilateral, at the second costochondral junctions, just lateral to the junctions on upper surfaces.

Lateral epicondyle: Bilateral, 2 cm distal to the epicondyles.

Gluteal: Bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.

Greater tochanter: Bilateral, posterior to the trochanteric prominence.

Knee: Bilateral, at the medial fat pad proximal to the joint line.

Digital palpation should be performed with an approximate force of 4 kg.

For a tender point to be considered "positive," the subject must state that the palpation was painful. "Tender" is not to be considered "painful."

* For classification purposes, patients are said to have fibromyalgia if both criteria are satisfied. Widespread pain must have been present for at least 3 months. The presence of a second clinical disorder does not exclude the diagnosis of fibromyalgia.

Note: From "The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia: Report of the Multicenter Criteria Committee," by F. Wolfe, H.A. Smythe, M.B. Yunus, R.M. Bennett, C. Bombadier, D.L. Goldenberg, P. Lugwell, S.M. Campbell, M. Abeles, & R Clark, 1990, Arthritis & Rheumatism, 33(2), p. 160-172. Copyright 1990 by Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc. Reprinted with permission.
Table 1. Common Symptoms Associated with
Fibromyalgia *

 Percentage
Symptom of Patients

Widespread pain 97.6
Tenderness in >11/18 tender points 90.1
Fatigue 81.4
Morning stiffness 77.0
Sleep disturbances 74.6
Paresthesias 62.8
Headache 52.8
Anxiety 47.8
Dysmenorrhea history 40.6
Sicca symptoms 35.8
Prior depression 31.5
Irritable bowel syndrome 29.6
Urinary urgency 26.3
Raynaud's phenomenon 16.7

* Other commonly reported symptoms include dizziness, trouble with
memory and concentration, rashes, and chronic itching.

Note: From "The prevalence and characteristics of fibromyalgia in the
general population," by F. Wolfe, K. Ross, J. Anderson, I.J. Russell,
& L. Herbert, 1995, Arthritis & Rheumatism, 38, pp. 19-28. Copyright
1995 by Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc.
Reprinted with permission.

Table 2. Commonly Prescribed Drugs for Fibromyalgia

 Potential
Drug Usual Dosages Side Effects

Non-narcotic
analgesics
Aspirin As prescribed GI upset
or acetaminophen

Nonsteroidal
Antiinflammatory
Advil, Aleve, Range as recommended 1. GI upset
Cataflam, Motrin, by each drug 2. Water retention
Naproxen, Lodine, manufacturer
Vioxx, Celebrex

Muscle Relaxants
cyclobenzaprine As prescribed 1. Drowsiness
(Flexeril) 2. Dry mouth
 3. Constipation
 4. Heart palpitations

Trycyclic
Antidepressants
amitriptyline 10-100 mg taken 1. Drowsiness
(Lavil), doxepin 2 hours before 2. Dry mouth
(Sinequan), bedtime 3. Constipation
nortriptyline 4. Heart palpitations
(Pamelor) 5. Urinary retention
 6. Dizziness
 7. Blurred vision
 8. Weight gain

Selective Serotonin
Reuptake Inhibitors
Sertraline (Zoloft), As prescribed 1. Insomnia
fluoxetine (Prozac), 2. Dry mouth
paroxetine (Paxil) 3. Headache
 4. Nausea
 5. Diarrhea

Drug Patient Instructions

Non-narcotic
analgesics
Aspirin 1. Do not take with a history of peptic ulcer
or acetaminophen disease.
 2. Do not take on an empty stomach.
 3. Do not combine with blood thinners
 unless approved by healthcare provider.

Nonsteroidal
Antiinflammatory
Advil, Aleve, 1. Do not take with a history of peptic
Cataflam, Motrin, ulcer disease.
Naproxen, Lodine, 2. Do not take on an empty stomach.
Vioxx, Celebrex 3. Do not combine with blood thinners
 unless approved by healthcare provider.

Muscle Relaxants
cyclobenzaprine 1. Do not drive if experiencing drowsiness.
(Flexeril) 2. Increase fluids and use mints as needed.
 3. Increase fiber in diet.
 4. Report heart palpitations to healthcare
 provider.

Trycyclic
Antidepressants
amitriptyline 1. Do not drive if experiencing drowsiness.
(Lavil), doxepin 2. Increase fluids and use mints as needed.
(Sinequan), 3. Increase fiber in diet.
nortriptyline 4. Report heart palpitations to healthcare
(Pamelor) provider.
 5. Report urinary retention to healthcare
 provider.
 6. Change positions or movements slowly.
 7. Report blurred vision to healthcare
 provider.

Selective Serotonin
Reuptake Inhibitors
Sertraline (Zoloft), 1. Take in morning hours.
fluoxetine (Prozac), 2. Increase fluids and use mints as needed.
paroxetine (Paxil) 3. Report symptoms of persistent
 headaches, nausea, or diarrhea to
 healthcare provider.
 4. Avoid St. John's Wort


Table 3. Cognitive Difficulties Associated with Fibromyalgia

* Difficulty remembering things

* Difficulty with problem solving

* Difficulty recalling names

* Difficulty coming up with the right word

* Difficulty with thought processing

* Difficulty concentrating

* Difficulty organizing or planning

Acknowledgment

The authors express their appreciation to Dr. Warren C. Boop, Professor Emeritus, Department of Neurosurgery, University of Arkansas for Medical Sciences and former Director of the Arkansas Rehabilitation Pain Center for reviewing the manuscript.

Questions or comments about this article may be directed to: Linda C. Hodges, EdD RN, College of Nursing, University of Arkansas for Medical Sciences, 4301 W. Markham, Slot 529, Little Rock, AR 72205. She is a dean and a professor at the College of Nursing, University of Arkansas for Medical Sciences.

References

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Leventhal, L.J. (1999). Management of fibromyalgia. Annals of Internal Medicine, 131, 850-858.

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Starlanyl, D.J. (1999). The fibromyalgia advocate. Oakland, CA: New Harbinger Publications.

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Thorson, K. (1998, January). Fibromyalgia syndrome. Testimony to U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, Washington, DC.

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Janet L. Smith-Rooker, MNSc RN, is a part-time clinical nurse specialist in the department of neurosurgery, University of Arkansas for Medical Sciences.

Gloria Mugno, MEd RN, is the director of nursing education in the Southwest Area Health Education Center at the University of Arkansas for Medical Sciences.
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Date:Apr 1, 2002
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