WORK A Journal of Prevention,
Assessment & Rehabilitation
ELSEVIER
Work 11 (1998) 97-106
Student paper
Fibromyalgia: symptoms, treatment and strategies for daily life and work Leigh Nolan* Received 1 May 1997; accepted 13 June 1997
Keywords: Fibromyalgia syndrome; Musculoskeletal pain; Sleep disturbances
1. Introduction 'I used to be a very active person ... I worked as a nurse, but I haven't done that in over fifteen years ... everything is hard for me now'. - Ellen, 4/1/1997
Ellen is one of a growing number of Americans diagnosed with fibromyalgia syndrome (FMS), and one of many FMS sufferers who has lost the ability to work in their chosen career. Fibromyalgia, formerly called fibrositis, is a chronic disorder of unknown etiology. It involves widespread musculoskeletal pain, stiffness and sleep disturbances and often includes many associated physical, cognitive or psychological problems (Melvin, 1996). FMS is estimated to affect 2% of the population, and is much more common in women (3.4%) than
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in men (0.5%) (Wolfe et aI., 1995). It can affect children (Calbro, 1986) but generally affects adults, with the average age being 54 years (Wolfe et aI., 1995). The combination of pain, fatigue and other associated symptoms can be highly debilitating and, in many cases, limits the sufferer's ability to perform work, leisure and daily living activities (Cathey et aI., 1988; Henriksson et aI., 1992; Hcnriksson, 1995). The functional, psychological and economic impact on the lives of people with FMS can be profound. Clinicians, therefore, are faced not only with the task of minimizing the physiological effects of fibromyalgia, they must, at the same time, find ways to help their clients resume productive and satisfying lives. Although there is no cure for FMS, research indicates that individually tailored and comprehensive treatment can alleviate many symptoms and increase ability to function in daily life and work. This paper will review the charac-
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teristics and etiologic factors of FMS, explore its impact on the psychological wellbeing and functional abilities of people suffering from this syndrome, review some treatments and strategies which can enable people to return to work and productive lives, then present a case study. 2. Causative factors and characteristics of FMS 2.1. Cause
The etiology of fibromyalgia is unknown. Moreover, determination of fibromyalgia as a distinct medical syndrome has been highly controversial due to the subjective nature of the illness. Lab tests, including blood work-ups and EMG studies are typically normal in the person with FMS (Baumstark and Buckelew, 1992). Because of the lack of physiological evidence of dysfunction, it has often been suggested that fibromyalgia is psychogenic. In fact, FMS was, for a time, referred to as psychogenic rheumatism. Psychological research does support association of depression, anxiety and increased somatic awareness with FMS (Boissevain and McCain, 1991a, II). These symptoms, however, are not unique to FMS and the direction of association (cause or effect) is unclear so that, until further research is conducted, it can only be suggested that psychological problems seem to be a consequence of the FMS experience rather than a causative factor or marker of the syndrome (Boissevain and McCain, 1991a,b). Research has suggested that there may be underlying metabolic and musculoskeletal factors which precipitate the emergence of fibromyalgia symptomatology. Wortman (1994, p. 790), however, notes that 'although a wide variety of mechanisms have been proposed to explain the symptoms, none has been conclusively demonstrated to playa critical role'. Some studies have suggested that abnormalities of muscle fiber or of muscle metabolism may be present in FMS but evidence is conflicting (Boissevain and McCain, 1991a, I; Wortman, 1994). Stronger evidence exists for the existence of neurochemical imbalances in persons suffering from FMS. One of the principle hypotheses centers on
the role of 5-hydroxytryptamine (serotonin) in FMS symptomatology (Boissevain and McCain, 1991a). Serotonin depletion, which has been noted in FMS (Baumstark and Buckelew, 1992) will disrupt the body's ability to regulate pain, mood, sleep and immune system functions. A disturbance of CNS metabolism of serotonin, therefore, may be important in FMS symptomatology. Serotonin's role in sleep is of particular importance because it mediates slow wave (non-REM) sleep. It is during the slow wave period that growth hormone, essential for reparation of body tissues, is secreted at the highest level (Ganong, 1993). Disturbance in slow-wave sleep will thus inhibit the body's ability to repair daily micro trauma which can result in soreness, stiffness and fatigue. Teitelbaum (1995) suggests that there may be underlying adrenal and thyroid deficiencies as well as nutritional deficiencies. Adrenal deficiencies would cause FMS symptoms, such as fatigue, cold intolerance, low body temperatures and achiness. Thyroid deficiencies would cause fatigue, recurrent infections which one cannot fight, achiness and inability to respond to stress (Teitelbaum, 1995). Nutritional deficiencies may result in a variety of problems. Other possible factors in FMS symptomatology may be immune system dysfunction, disturbance in catecholamine levels, disturbance in endorphin levels and increased levels of substance P (Boissevain and McCain, 1991a, n. It is theorized that persons with FMS have an underlying abnormality and that the emergence of symptoms is triggered by a combination of behavior, physiological and/or psychosocial event. (Baumstark and Buckelew, 1992). Wolfe (1986) reports that in patients interviewed, physical trauma and emotional factors such as stress were most commonly cited as precipitating factors for FMS symptomatology. Masi and Yunus (1986, p. 24) propose that 'multiple agent, host and environmental factors probably contribute to the onset or risk of developing generalized fibromyalgia and maintenance of its activity... Etiologic and pathogenic theories of the disorder may need to incorporate a matrix or systems concept of multiple factors simultaneously contributing to illness'.
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2.2. Characteristics
changes in physical activity or changes in weather (Littlejohn, 1989).
According to the American College of Rheumatology (Wolfe et aI., 1990) diagnosis of fibromyalgia requires: (i) a history of widespread pain which has been present for at least three months; and (ii) pain in 11 of 18 tender point sites (see Table 1). The most common complaints of persons with fibromyalgia are pain, fatigue, sleep disturbances and morning stiffness (Wolfe et aI., 1990). Moreover, most people suffer from one or many associated symptoms. These may include parasthesias, anxiety, headaches, general irritable bowel (Melvin, 1996; Wolfe et aI., 1990, 1995), general malaise, weakness, poor balance, changes in circulation and ability to regulate body temperature, mitral valve prolapse, Raynaud's phenomenon, increased sensitivity to pain, swelling, urinary frequency, visual or auditory problems, allergies, skin rashes, skin sensitivity, cognitive or memory impairment, depression, anxiety or irritability (Melvin, 1996). FMS now co-exist with chronic fatigue syndrome, and symptoms often overlap (Teitelbaum, 1995). Symptoms vary with each person and severity may fluctuate with stress levels,
Table I Tender point sites for classification of fibromyalgia Site
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Description
1. Occiput 2. Low cervical
At the suboccipital muscle insertions. At the anterior aspects of the intertransverse spaces at C5-C7. 3. Trapezius At the midpoint of the upper border. 4. Supraspinatus At origins, above the scapula spine, near the medial border. 5. Second rib At the second costochondral junction, just lateral to the junctions on upper surfaces. 6. Lateral epicondyle 2 cm distal to the epicondyles. 7. Gluteal In upper outer quadrants of buttocks in anterior fold of muscle. 8. Greater trochanter Posterior to the trochanteric prominence. 9. Knee At the medial fat pad proximal to the joint line. Note. All sites are bilateral. Taken from Wolfe et al. (1990).
3. Impact on psychological wellbeing and on function
3.1. Psychological wellbeing As noted previously, it has been established that psychological distress often co-exists with fibromyalgia. Although it is unclear whether or not psychological issues precede onset of FMS symptoms, it is clear that the impact of fibromyalgia can negatively impact social, emotional and psychological wellbeing. The experience of constant pain and fatigue may be a factor in psychological malaise. Parker (1995, p. 17), when discussing the impact of pain on anxiety and depression, states that 'anticipation of pain produces anxiety, reducing the pain threshold. Persistent pain leads to depression, marital difficulties, sexual difficulties and the experience of being a burden to others'. Many other factors may also contribute to psychological distress. For many, obtaining a diagnosis of fibromyalgia may take a long time. Because FMS has so many associated symptoms and because lab tests come out normal, it is hard to pinpoint the cause of the problem. The stress of being sick for a long time without knowing why can result in anxiety, depression or helplessness. In the face of negative lab tests and inconclusive exams, many people are told 'it's all in your head'. Additionally, family, social and employer/co-worker support for decreased abilities is often low due to the fact that people with FMS generally look healthy (Henriksson, 1995). The added stress of disbelief by family, friends and clinicians may cause selfdoubt, feelings of isolation and deepened depression. The person with FMS may fear losing her job or important relationships, thus further increasing stress and perhaps exacerbating symptoms. Finally, the loss of the ability to perform valued and necessary life and work activities may cause feelings of loss and decreased self-worth. To avoid negative consequences, people with FMS may hide their pain and push themselves to
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do more than they should (Raymond and Bergland, 1994). The combination of over-exertion and the psychological stress of hiding the pain can exacerbate symptoms, thus further decreasing the persons abilities. Raymond and Bergland note that masking pain and decreased ability may also result in further problems when the person with FMS does seek assistance because they have previously given the appearance that nothing was wrong. 3.2. Function (daily life and work)
The symptoms of fibromyalgia, in addition to causing psychological and emotional distress due to pain and reactions from others, may severely impact daily life and work. As measured by the Arthritis Impact Measurement Scales which assess ability to perform basic daily tasks, persons with FMS have comparable disability levels to persons with rheumatoid arthritis in the areas of mobility, physical activity and activities necessary to run a household (Robbins and Kirmayer, 1990). In a study by Henriksson et ai. (1992), 90% of patients interviewed reported that FMS symptoms interfered with or at least affected daily life. Eighty-four percent of patients had given up one or more activities in the home, work or leisure, 78% had given up all active leisure activities, and the same percentage had changed habits and routines to accommodate their limitations. Generally, people needed to plan everything more, could accomplish less, and needed a greater degree of assistance in performing activities than they had before the onset of FMS. Work can pose one of the greatest challenges because patients with FMS fatigue quickly and are easily affected by stress. In one study of 176 people with fibromyalgia, 17% had stopped working and 30.4% had changed jobs due to FMS (Cathey et aI., 1988). In another study (Henriksson et aI., 1992), 69% of people interviewed stated that FMS had negatively affected their work situation. Cathey et al. (1986), however, found that work disability, as measured by hours worked per week and number of days lost per year due to FMS, is limited. Conflicting information may be due to differences in types of jobs performed.
Silverman and Mason (1992) noted that the workplace environment and the type of work performed can have as much of an effect as the illness itself in terms of ability to perform one's job. People with FMS often experience pain and muscular fatigue during 90% of their day (Henriksson et aI., 1992). Therefore jobs which pose the greatest difficulty are those which require a high degree of physical exertion, static postures or repetitive motion. In typical work task such as twisting the wrist, pushing and pulling, working above the head, lifting from the floor and operating moving machinery (vacuum cleaner), people with FMS were able to perform only 58% of the work performed by normal controls, as compared to people with RA who performed 62% of the work (Cathey et aI., 1988). According to Waylonis et ai. (1994), work tasks which are likely to aggravate symptoms of FMS include tasks which require prolonged static postures, unusual or very long hours, visual and auditory stimulation and cold or drafty environments. Because of their susceptibility to fatigue, jobs which require maintenance of a constant pace or offer few opportunities for breaks may also be difficult for people with fibromyalgia. Jobs which are most easily tolerated involve performance of a variety of light tasks requiring minimal exertion and which are located in a warm, controlled environment (Waylonis et aI., 1994). Office type work as opposed to factory work or jobs involving physical labor, therefore, appear to be best suited to the abilities and limitations of persons with FMS. A factor frequently identified as limiting ability is fatigue (Henriksson et aI., 1992). Limitations in motor performance (weakness and clumsiness), pain triggered by physical effort, and mistrust of one's capacity, due to limited eyesight, decreased judgment and decreased strength, also commonly interfere with task performance (Henriksson, 1995). One wakes up feeling stiff and fatigued, and the pain continues throughout the day. As a result, most tasks and activities tend to be perceived as strenuous and difficult. Getting through the day, therefore, may require tremendous motivation and will power. In assessing work ability,
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Cathey et ai. (1988) assert that functional loss is a result of FMS and that pain, psychological status and disability status (as measured by a standardized instrument, such as the Stanford Health Assessment Questionnaire Disability Index) are the main factors which affect work performance. Self efficacy, which refers to 'the belief that one can manage a specific challenging situation' (Buckelew et aI., 1995, p. 43) and activity level may also affect severity of symptoms and level of dysfunction. Buckelew et ai. reported that selfefficacy (as measured by the Arthritis Self-Efficacy Scale) was a better predictor of self-report pain and activity scores than demographic variables, psychological issues or severity of illness. People with FMS who are working report higher levels of fitness, greater ability to perform daily activities, and lower levels of pain and fatigue (Cathey et aI., 1988; Henriksson et aI., 1992). Henriksson et al. acknowledged that those who hold a job may be able to work because of lower levels of pain and fatigue but hypothesized that the lower pain and fatigue and higher fitness level may be due to the fact that they are working. This is a logical hypothesis based on the correlation of self-efficacy on pain and physical activity (Buckelew et aI., 1995) and based on the fact that exercise and activity have been shown to decrease the symptoms of FMS (McCain, 1986; Goldenberg, 1989). 4. Treatment and strategies Fibromyalgia is a complex and multifaceted syndrome. It is a chronic disorder for which there is no cure. The physiology of FMS is poorly understood and subjective factors, such as stress, psychological wellbeing and self-efficacy, seem to influence physical manifestations and decrease in functional ability. Treatment therefore must be comprehensive and look at not only the physical symptoms, but also at the psychological wellbeing, coping skills and daily routines of the person suffering from FMS. 4.1. Medical treatments
Tricyclics (such as amitriptyline and cycloben-
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zap rene) have an analgesic effect, improve the duration of non-REM sleep, may increase mood, and have been found to have a beneficial effect in reducing FMS symptoms (Goldenberg, 1989). Low doses of adrenal and/ or thyroid hormones may be helpful in reducing many FMS symptoms (Teitelbaum, 1995). Local injections of corticosteroids or analgesics may reduce pain temporarily in specific sites (Baumstark and Buckelew, 1992). In a technique referred to as spray and stretch, the involved muscle is stretched immediately after injection of a local anesthetic (Goldenberg, 1989; National Fibromyalgia Research Association, 1997). Non-steroid anti-inflammatory drugs are found to be ineffective in relieving FMS pain (Goldenberg, 1989; Baumstark and Buckelew, 1992; National Fibromyalgia Research Association, 1997). Underlying structural factors (such as one leg shorter than the other) should be checked and addressed to relieve tension caused by muscle imbalances (Teitelbaum, 1995). 4.2. Other therapeutic interventions
A modality that is strongly supported in alleviation of FMS symptoms is physical exercise in the form of cardiovascular fitness training (CVR) (McCain, 1986; Goldenberg, 1989; Melvin, 1996). Flexibility training helps, but significantly less than CVR (McCain, 1986). A suggested exercise routine consists of 20 min of physical activity, three times per week at 70% of maximum heart rate (National Fibromyalgia Research Association, 1997). Patients should avoid high-impact, highstress exertion, such as jogging, weightlifting or basketball, and choose gentler exercises, such as walking, swimming, T'ai chi, or use of a stationary bicycle (Melvin, 1996; National Fibromyalgia Research Association, 1997). Physical modalities, such as heat, massage, ultrasound, stretching, and transcutaneous nerve stimulation, may help relieve symptoms temporarily. Alternative therapies, such as cranio-sacral or myofascial release, have also been reported to be helpful (National Fibromyalgia Research Association). Changes in diet and nutrition including screening for food allergies, improving diet, and avoiding caffeine and alcohol may help to reduce a
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variety of symptoms (Teitelbaum, 1995; Melvin, 1996; Nye, 1997). A healthful diet which includes vitamin and mineral supplements can improve overall health, proper metabolism, mood and energy level. (Melvin, 1996; Teitelbaum, 1995). Melvin notes that calcium and magnesium supplements are important for muscle metabolism, and adds that eating proteins and carbohydrates at certain times of the day can affect energy, concentration, ability to sleep and quality of sleep as mediated by levels of serotonin (made from tryptophan found in food). Teitelbaum stresses that vitamin and mineral deficiencies, especially of magnesium, iron and vitamin B-12 need to be corrected. Alcohol, caffeine and nicotine should be avoided because they may increase anxiety, interfere with sleep and exacerbate stomach and bowel irritation (Melvin, 1996). Stress management training, including relaxation and/or biofeedback training has been found to promote improvement in all clinical parameters (Baumstark and Buckelew, 1992). Psychotherapy may be helpful for those people experiencing depression or extreme anxiety (Melvin, 1996) and support groups can offer all FMS sufferers education and peer support. Other intervention techniques found to be helpful include cognitive-behavioral therapy techniques (Nye, 1997). 4.3. Patient education and strategies for daily life
Of utmost importance is patient education and counseling. Patients need to understand that FMS is a chronic and poorly understood syndrome, but that it is not a disease. Their bodies will not be permanently damaged, symptoms need not be progressive, and disability need not be permanent (Goldenberg, 1989; Melvin, 1996). Education needs to include advice on body mechanics and posture as well as on changing routines and habits. Henriksson et al. (1992) posit that in addition to trying to decrease pain and normalize sleep, treatment should focus on helping the person with FMS to change daily activity patterns so that she may function successfully in spite of symptoms. Since muscles do not recover well from microtrauma caused by daily wear and tear, use of good
body mechanics, pacing of activities and frequent rest-breaks are crucial. Proper alignment of the body (good posture) and use of good body mechanics during lifting and activity performance will decrease stress and trauma of muscles. Repetitive motions or static postures are damaging to muscles, and people with FMS are especially sensitive to this. Waylonis et al. (1994, p. 114) note that 'too much of anything tends to aggravate the symptoms of fibromyalgia, especially if there are superimposed environmental stresses'. It is important not to maintain the same posture for more than 20 min. One should take breaks, stretch and change position (Henriksson, 1995; National Fibromyalgia Research Association, 1997). Rearrangement of the home or work space so that frequently used items are easily accessible and bending and lifting is minimized can decrease musculoskeletal strain and preserve energy. Scheduling becomes very important. Because of morning stiffness, many people need several hours to get ready in the morning (Henriksson et aI., 1992; Henriksson, 1995). Adequate rest is needed throughout the day so activities and appointments should be spaced out and limited to ensure adequate 'down time'. Some people may even need to lie down for a while or take a nap during the day (Henriksson, 1995). People also need to learn to recognize their limitations and abilities. Too much rest and inactivity can result in deconditioning which can contribute to muscle pain and stiffness (Melvin, 1996). On the other hand, pushing too hard and overdoing it can exacerbate symptoms and set one back for several days. A person with FMS, therefore, needs to maintain a daily activity routine, but cannot easily accommodate extra unforeseen tasks. Asking for help from others, making priorities and being flexible can help to avoid overexertion (Henriksson, 1995). Lifestyle and sometimes work changes will have to be made. A person who is accustomed to maintaining a hectic schedule or a very active lifestyle will need to slow down and make priorities. An evaluation of work tasks will often reveal possible accommodations, such as job or task rotation, increasing frequency of breaks, altering the work space or purchasing equipment. Some
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jobs which consist primarily of high stress or repetitive tasks, however, may not be possible. Occupational activities reported as most aggravating to people with FMS include: word processing, prolonged sitting, prolonged standing and walking, stress, heavy lifting or bending, repeated moving and lifting, prolonged writing, performing tasks with arms extended and unsupported, prolonged telephone use, cold or drafty environments, prolonged driving, bending over work surface, cleaning house and desk work (Waylonis et aI., 1994). It is clear from this list that prolonged maintenance of anyone posture or activity is poorly tolerated. A simple accommodation may therefore be to change positions frequently and to break down tasks so that anyone activity is performed for only a short amount of time. Many of these tasks can be facilitated with simple engineering controls, such as raising the work surface or providing arm support. Other tasks, such as using the telephone, can be made less aggravating through equipment, such as a speaker phone or headset. Some jobs, however, such as an assembly line where one is required to stay in the same position performing the same task for long periods of time, or a job which requires frequent lifting may not be possible. Each person is different. Understanding the nature of a person's symptoms, their personality, their lifestyle, their job requirements and the activities which aggravate their condition is necessary to tailor intervention strategies. 5. Case study 5.1. History
Rachel is a 28-year-old lobbyist for a Washington DC non-profit agency. Her job requires long hours in addition to extra time attending functions in order to network with colleagues and expand contacts. Rachel is highly ambitious and, for years, was actively involved in other professional organizations outside of and in addition to work. From 1993 to 1995, she served as co-chair of a professional society. In 1995, just after getting married, Rachel began to experience extreme fatigue, joint and muscle pain, gastrointestinal problems and frequent fevers with flu-like symp-
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toms. She first hypothesized that her symptoms may have been due to exhaustion resulting from long hours at work and the stress of planning her wedding. Trying to rest and taking occasional days off of work did not seem to help however, and symptoms persisted. She looked fine to others so she began to experience problems at work because she was taking so much time off. Her husband was worried about her illness and tried to be supportive, but could not understand what was going on. Rachel began to push herself to function normally. Her symptoms, along with her stress level, increased. 5.2. Medical testing and intervention
Medical examinations and months of testing yielded no answers. At various times she was told that she may have lupus, mUltiple sclerosis, and that it was 'all in her head'. She was referred for psychological counseling but again, symptoms continued. Finally, after several months, Rachel was referred to a doctor who screened her for GI problems and for blood mineral levels. He found that she had very high levels of yeast in her gastro-intestinal tract and that her vitamin and mineral levels were extremely abnormal. Of specific concern was a major magnesium deficiency which can cause mitral valve prolapse, muscle aches and extreme fatigue. Rachel was put on a strict diet with vitamin and mineral supplements and began taking anti-fungal medications. This doctor also suspected that Rachel was allergic to mold and advised that she eliminate as much mold from her house as possible. The combination of dietary changes, vitamin and mineral supplements and environmental change (eliminating mold) improved symptoms somewhat but Rachel remained incapacitated. In May of 1996, Rachel's symptoms became so bad that her doctor advised that she take a 6month break from work. Rachel's employer agreed and Rachel began to focus exclusively on getting better. In June, she began to see a second doctor. This physician tested Rachel's hormone levels and found that she had abnormally low adrenal and ovarian hormone levels. After further examination and testing, he diagnosed her
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with chronic fatigue syndrome and fibromyalgia. Rachel was given estrogen supplements and low doses of adrenal cortisol. She reports that her symptoms at this point decreased dramatically. Additionally, she began taking low doses of tricyclics and melatonin to improve sleep. 5.3. Other interventions
During her 6-month break, Rachel slept up to 10 h per night and took naps during the day. She began seeing a massage therapist and reported that this helped to decrease stress and muscle aches. She also received acupuncture which, she reported, helped to increase her energy level. She began taking a class in Yoga and meditation and incorporated these into her daily routine. Rachel reported that the stretching and relaxation helped to decrease pain, stiffness and stress. For the first year and a half of her illness, Rachel felt too weak, tired and sore to do any exercise. She had thus become deconditioned and reports that any activity would tire her. As symptoms began to decrease, however, she began to increase her yoga routine and incorporate gentle exercise. Daily activities became more tolerable and her pain and fatigue continued to decrease. 5.4. Lifestyle changes and strategies
At home, Rachel has been able to retain most of her roles with some modifications. She still cooks, but will often cook a lot of food on one day then freeze it to save energy on busy days or when she is tired. She and her husband share light housework and they have hired someone to come in once per week to clean. Rachel is starting to resume some of her old leisure activities, such as going out with friends, hiking and boating, but she finds that she needs to plan her day carefully so that she has enough energy. In January, Rachel returned to work part-time. Although her symptoms had decreased dramatically by the time she returned to work, she quickly found that she could not maintain her old routines, nor could she perform her job in the same manner to which she had become accustomed to.
Changes needed to be made in her environment, her routine and her work habits. 5.4.1. Environmental adaptations One of the first things that Rachel did was to buy a new car. Her commute to work takes 1 h each way and her old car, which was uncomfortable, loud and vibrated heavily when she drove, aggravated her symptoms. She would arrive to work stiff, sore and exhausted. With her new car, she is able to drive to work and still feel relatively rested and ready for the day. Her work space itself needed some alterations as well. She already possessed an ergonomically designed, adjustable chair, an adjustable keyboard and a wrist support. Her office has a window so that she gets natural light but the fluorescent lights gave her headaches. To alleviate this, she purchased a halogen lamp. She also purchased an anti-glare, anti-radiation screen for her computer because she found that the glare from the monitor gave her headaches, and caused her eyes to become bloodshot and fatigued. Her computer monitor sat on the corner of her desk approx. 12 inches from her face. The screen was too low, too close to her face and at a poor angle. She found that computer use gave her a sore neck and tired eyes. She obtained a computer table that supported the screen at the proper height, angle and distance and set her work space up so that the desk and the computer table formed an 'L'. Her job requires frequent phone use so she requested a speaker phone which would eliminate the need to cradle the receiver. She rearranged her desk and office space so that all frequently-used items were easily accessible. She obtained new filing cabinets which were only two drawers high and placed these on a table so that she did not need to bend down or reach up to access files. Finally, she had to get rid of all of her plants because the mold aggravated her allergies. 5.4.2. Work habits One of the first changes that Rachel had to make in her work habits was her clothing. She could not tolerate high-heeled shoes or binding business suits. She now wears loose-fitting, comfortable clothing so that she can sit more com-
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fortably and move with greater ease, and lowheeled shoes to decrease stress on her feet. A symptom frequently reported in FMS is impaired memory and cognition (Melvin, 1996). Rachel reports that this is a problem for her. She notes that she forgets things more easily now than she used to and remarked that 'I've always made lists but now I am the supreme master of list making'. A major adjustment that she has had to make at work is to be vigilant about setting limits. Whereas in the past she frequently took on new projects, she now cannot handle as much work. She has built up to a 4-day work week and feels that she cannot handle any more than this. Rachel reports that this adjustment was very difficult for her. She needed to reassess her abilities and priorities and decide whether she was willing to sacrifice her health and wellbeing for her ambition. She notes that setting limits at work can be very difficult because her co-workers are accustomed to her old habits and, since she looks fine, they have a hard time accepting her new limitations. Rachel has had to work on assertive communication skills and has learned to be firm. In addition to decreasing her work load, Rachel has had to cut extra-curricular professional activities, such as seminars, networking sessions, cocktail parties and fund-raisers. In Washington, where success and ability to accomplish things relies largely on networking, these types of activities can be crucial to career advancement. She has three guiding rules that she uses at work now: (i) don't take on too much; (iO minimize stress; and (iii) maintain constant communication with the boss. The third strategy has been very important. By educating her boss and constantly reminding him of her limitations, while at the same time demonstrating her continued dedication to her work, Rachel has been able to retain the support of her boss. This has been crucial in light of her time off, her limited work capacity and the modifications and equipment that she has requested. 5.4.3. Routine Rachel had been accustomed to waking up 4S min before she had to leave her house. When she tried to resume this routine, she experienced such morning stiffness and extreme fatigue that she
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could not continue. She now gets up 2 h before she has to leave, takes a short walk around her neighborhood then spends approx. 20 min doing her yoga routine. Because of food allergies, she cannot eat wheat, dairy or many standard breakfast foods. Instead of grabbing a bowl of cereal or a bagel as she had done in the past, she now prepares vegetables, tofu or other well-balanced meals for breakfast. In the past, Rachel would often get involved in what she was doing during the day and skip lunch. She now finds that skipping a meal results in her feeling exhausted and unable to concentrate. Scheduling and planning have become crucial elements in her life. 5.5. Summary
Rachel's illness initially resulted in such a degree of disability that she was unable to continue with work or other valued activities. With comprehensive intervention, rest and lifestyle changes, however, she is slowly resuming valued roles and activities. 6. Conclusion Because FMS can manifest in such a variety of symptoms, each person's experience and needs will be very different. Intervention requires the help of many different professionals. Doctors, who have the initial contact with the patient, need to recognize the symptoms, diagnose them correctly and provide drugs to help correct the neurochemical and metabolic imbalances. Psychotherapists can work with a person to decrease depression and anxiety and can help them to develop coping skills. Physical therapists can provide massage, stretching and various modalities to improve flexibility and decrease pain. They can also instruct the client in proper posture and body mechanics and help them to develop an exercise and fitness program. The occupational therapist will look at the physical and psychosocial functioning of the person with FMS. They can help the FMS sufferer to evaluate the ways in which their limitations are interfering with their life and help them to develop coping strategies, change routines and habits, improve body mechanics or
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posture during task performance, or alter the environment to maximize functional ability. A variety of other practitioners, such as nutritionists, massage therapists or acupuncturists, may also play important roles in the rehabilitation and continuing health of the person with FMS. There is no cure for fibromyalgia, but through a comprehensive lifestyle change which involves exercise, stress management, plenty of rest, a good diet and careful daily planning, along with medical and psychological intervention as needed, FMS symptoms can be minimized and a balanced life, including work in most cases, can be maintained. References Baumstark K, Buckelew SP. Fibromyalgia: clinical signs, research findings, treatment implications and future directions. Ann Behav Med 1992;14:282-291. Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome: I. Medical and pathophysiological aspects. Pain 1991 a;45 :227 - 238. Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome: II. Psychological and phenomenological aspects. Pain 1991 b;45:239- 248. Buckelew SP, Murray SE, Hewett JE, Johnson J, Huyser B. Self-efficacy, pain and physical activity among Fibromyalgia subjects. Arthritis Care Res 1995;8:43-50. Cathey MA, Wolfe F, Kleinheksel SM. Functional ability and work status in patients with Fibromyalgia. Arthritis Care Res 1988;1 :85-98. Cathey MA, Wolfe F, Kleinheksel SM, Hawley DJ. Socioeconomic impact of fibrositis: a study of 81 patients with primary fibrositis. Am J Med 1986;81 :78-84. Calbro JJ. Fibromyalgia (fibrositis) in children. Am J Med 1986;81 :57-59. Ganong WF. Review of medical physiology. Norwalk, CT: Appleton and Lange, 1993. Goldenberg DL. Management of fibromyalgia syndrome. Rheum Dis Clin North Am 1989;15:499-513. Henriksson CM. Living with continuous muscular pain -_ .. Patient perspectives: part I: encounters and consequences. Scand J Caring Sci, 1995:67-76.
Henriksson CM, Gundmark I, Bengtsson A, Ek AC. Living with fibromyalgia. Clin J Pain 1992;8:138-144. Littlejohn GO. Fibrositis/fibromyalgia syndrome in the workplace. Rheum Dis Clin North Am 1989;15:45-61. Masi AT, Yunus MB. Concepts of illness in populations as applied to fibromyalgia syndromes. Am J Med 1986;81: 19-25. McCain GA. Role of physical fitness training in the fibrositis/fibromyalgia syndrome. Am J Med 1986;81 :73-77. Melvin JL. Fibromyalgia syndrome: getting healthy. Bethesda, MD: American Occupational Therapy Association, 1996. National Fibromyalgia Research Association (NFRA). NFRA Web Page (http://www.nfra.com). NFRA, PO Box 500, Salem, OR 97302, 1997. Nye DA. A physician's guide to fibromyalgia syndrome. (http://www.eagle.ca/- jewitt/MD-FAQ.txt). David A. Nye, MD, Midelfort Clinic, Eau Claire, WI, 1997. Parker RS. The distracting effects of pain, headaches, and hyper-arousal upon employment after niinor head injury. J Cognit Rehab 1995;13:14-23. Raymond B, Bergland MM. Psychosocial aspects of fibromyalgia syndrome. J Appl Rehabil Couns 1994;25(3):42-46. Robbins JM, Kirmayer U. Illness worry and disability in fibromyalgia syndrome. I nt J Psychiatry Med 1990;20:49-63. Silverman SL, Mason JH. Measuring the functional impact of fibromyalgia. J Musculoskeletal Med 1992;July:15-24. Teitelbaum J. From fatigued to fantastic: a manual for moving beyond chronic fatigue and fibromyalgia. Annapolis MD: Deva Press, 1995. Waylonis GW, Ronan PG, Gordon C. A profile of fibromyalgia in occupational environments. Am J Phys Med Rehab 1994;73: 112-115. Wolfe F. The clinical syndrome of fibrositis. Am J Med 1986;81 :7-14. Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19-28. Wolfe F, Smythe HA, Yunnis MB et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the multicenter criteria committee. Arthritis Rheum 1990;33:160-172. Wortman RL. Searching for the cause of fibromyalgia: is there a defect in energy metabolism'! Arthritis Rheum 1994;37: 790-793.
Assessment & Rehabilitation
ELSEVIER
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Student paper
Fibromyalgia: symptoms, treatment and strategies for daily life and work Leigh Nolan* Received 1 May 1997; accepted 13 June 1997
Keywords: Fibromyalgia syndrome; Musculoskeletal pain; Sleep disturbances
1. Introduction 'I used to be a very active person ... I worked as a nurse, but I haven't done that in over fifteen years ... everything is hard for me now'. - Ellen, 4/1/1997
Ellen is one of a growing number of Americans diagnosed with fibromyalgia syndrome (FMS), and one of many FMS sufferers who has lost the ability to work in their chosen career. Fibromyalgia, formerly called fibrositis, is a chronic disorder of unknown etiology. It involves widespread musculoskeletal pain, stiffness and sleep disturbances and often includes many associated physical, cognitive or psychological problems (Melvin, 1996). FMS is estimated to affect 2% of the population, and is much more common in women (3.4%) than
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in men (0.5%) (Wolfe et aI., 1995). It can affect children (Calbro, 1986) but generally affects adults, with the average age being 54 years (Wolfe et aI., 1995). The combination of pain, fatigue and other associated symptoms can be highly debilitating and, in many cases, limits the sufferer's ability to perform work, leisure and daily living activities (Cathey et aI., 1988; Henriksson et aI., 1992; Hcnriksson, 1995). The functional, psychological and economic impact on the lives of people with FMS can be profound. Clinicians, therefore, are faced not only with the task of minimizing the physiological effects of fibromyalgia, they must, at the same time, find ways to help their clients resume productive and satisfying lives. Although there is no cure for FMS, research indicates that individually tailored and comprehensive treatment can alleviate many symptoms and increase ability to function in daily life and work. This paper will review the charac-
1051-9815/98/$19.00 (el 1998 Published by Elsevier Science Ireland Ltd. All rights reserved. I'll S I 051-9815(98)00022-9
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teristics and etiologic factors of FMS, explore its impact on the psychological wellbeing and functional abilities of people suffering from this syndrome, review some treatments and strategies which can enable people to return to work and productive lives, then present a case study. 2. Causative factors and characteristics of FMS 2.1. Cause
The etiology of fibromyalgia is unknown. Moreover, determination of fibromyalgia as a distinct medical syndrome has been highly controversial due to the subjective nature of the illness. Lab tests, including blood work-ups and EMG studies are typically normal in the person with FMS (Baumstark and Buckelew, 1992). Because of the lack of physiological evidence of dysfunction, it has often been suggested that fibromyalgia is psychogenic. In fact, FMS was, for a time, referred to as psychogenic rheumatism. Psychological research does support association of depression, anxiety and increased somatic awareness with FMS (Boissevain and McCain, 1991a, II). These symptoms, however, are not unique to FMS and the direction of association (cause or effect) is unclear so that, until further research is conducted, it can only be suggested that psychological problems seem to be a consequence of the FMS experience rather than a causative factor or marker of the syndrome (Boissevain and McCain, 1991a,b). Research has suggested that there may be underlying metabolic and musculoskeletal factors which precipitate the emergence of fibromyalgia symptomatology. Wortman (1994, p. 790), however, notes that 'although a wide variety of mechanisms have been proposed to explain the symptoms, none has been conclusively demonstrated to playa critical role'. Some studies have suggested that abnormalities of muscle fiber or of muscle metabolism may be present in FMS but evidence is conflicting (Boissevain and McCain, 1991a, I; Wortman, 1994). Stronger evidence exists for the existence of neurochemical imbalances in persons suffering from FMS. One of the principle hypotheses centers on
the role of 5-hydroxytryptamine (serotonin) in FMS symptomatology (Boissevain and McCain, 1991a). Serotonin depletion, which has been noted in FMS (Baumstark and Buckelew, 1992) will disrupt the body's ability to regulate pain, mood, sleep and immune system functions. A disturbance of CNS metabolism of serotonin, therefore, may be important in FMS symptomatology. Serotonin's role in sleep is of particular importance because it mediates slow wave (non-REM) sleep. It is during the slow wave period that growth hormone, essential for reparation of body tissues, is secreted at the highest level (Ganong, 1993). Disturbance in slow-wave sleep will thus inhibit the body's ability to repair daily micro trauma which can result in soreness, stiffness and fatigue. Teitelbaum (1995) suggests that there may be underlying adrenal and thyroid deficiencies as well as nutritional deficiencies. Adrenal deficiencies would cause FMS symptoms, such as fatigue, cold intolerance, low body temperatures and achiness. Thyroid deficiencies would cause fatigue, recurrent infections which one cannot fight, achiness and inability to respond to stress (Teitelbaum, 1995). Nutritional deficiencies may result in a variety of problems. Other possible factors in FMS symptomatology may be immune system dysfunction, disturbance in catecholamine levels, disturbance in endorphin levels and increased levels of substance P (Boissevain and McCain, 1991a, n. It is theorized that persons with FMS have an underlying abnormality and that the emergence of symptoms is triggered by a combination of behavior, physiological and/or psychosocial event. (Baumstark and Buckelew, 1992). Wolfe (1986) reports that in patients interviewed, physical trauma and emotional factors such as stress were most commonly cited as precipitating factors for FMS symptomatology. Masi and Yunus (1986, p. 24) propose that 'multiple agent, host and environmental factors probably contribute to the onset or risk of developing generalized fibromyalgia and maintenance of its activity... Etiologic and pathogenic theories of the disorder may need to incorporate a matrix or systems concept of multiple factors simultaneously contributing to illness'.
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2.2. Characteristics
changes in physical activity or changes in weather (Littlejohn, 1989).
According to the American College of Rheumatology (Wolfe et aI., 1990) diagnosis of fibromyalgia requires: (i) a history of widespread pain which has been present for at least three months; and (ii) pain in 11 of 18 tender point sites (see Table 1). The most common complaints of persons with fibromyalgia are pain, fatigue, sleep disturbances and morning stiffness (Wolfe et aI., 1990). Moreover, most people suffer from one or many associated symptoms. These may include parasthesias, anxiety, headaches, general irritable bowel (Melvin, 1996; Wolfe et aI., 1990, 1995), general malaise, weakness, poor balance, changes in circulation and ability to regulate body temperature, mitral valve prolapse, Raynaud's phenomenon, increased sensitivity to pain, swelling, urinary frequency, visual or auditory problems, allergies, skin rashes, skin sensitivity, cognitive or memory impairment, depression, anxiety or irritability (Melvin, 1996). FMS now co-exist with chronic fatigue syndrome, and symptoms often overlap (Teitelbaum, 1995). Symptoms vary with each person and severity may fluctuate with stress levels,
Table I Tender point sites for classification of fibromyalgia Site
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Description
1. Occiput 2. Low cervical
At the suboccipital muscle insertions. At the anterior aspects of the intertransverse spaces at C5-C7. 3. Trapezius At the midpoint of the upper border. 4. Supraspinatus At origins, above the scapula spine, near the medial border. 5. Second rib At the second costochondral junction, just lateral to the junctions on upper surfaces. 6. Lateral epicondyle 2 cm distal to the epicondyles. 7. Gluteal In upper outer quadrants of buttocks in anterior fold of muscle. 8. Greater trochanter Posterior to the trochanteric prominence. 9. Knee At the medial fat pad proximal to the joint line. Note. All sites are bilateral. Taken from Wolfe et al. (1990).
3. Impact on psychological wellbeing and on function
3.1. Psychological wellbeing As noted previously, it has been established that psychological distress often co-exists with fibromyalgia. Although it is unclear whether or not psychological issues precede onset of FMS symptoms, it is clear that the impact of fibromyalgia can negatively impact social, emotional and psychological wellbeing. The experience of constant pain and fatigue may be a factor in psychological malaise. Parker (1995, p. 17), when discussing the impact of pain on anxiety and depression, states that 'anticipation of pain produces anxiety, reducing the pain threshold. Persistent pain leads to depression, marital difficulties, sexual difficulties and the experience of being a burden to others'. Many other factors may also contribute to psychological distress. For many, obtaining a diagnosis of fibromyalgia may take a long time. Because FMS has so many associated symptoms and because lab tests come out normal, it is hard to pinpoint the cause of the problem. The stress of being sick for a long time without knowing why can result in anxiety, depression or helplessness. In the face of negative lab tests and inconclusive exams, many people are told 'it's all in your head'. Additionally, family, social and employer/co-worker support for decreased abilities is often low due to the fact that people with FMS generally look healthy (Henriksson, 1995). The added stress of disbelief by family, friends and clinicians may cause selfdoubt, feelings of isolation and deepened depression. The person with FMS may fear losing her job or important relationships, thus further increasing stress and perhaps exacerbating symptoms. Finally, the loss of the ability to perform valued and necessary life and work activities may cause feelings of loss and decreased self-worth. To avoid negative consequences, people with FMS may hide their pain and push themselves to
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do more than they should (Raymond and Bergland, 1994). The combination of over-exertion and the psychological stress of hiding the pain can exacerbate symptoms, thus further decreasing the persons abilities. Raymond and Bergland note that masking pain and decreased ability may also result in further problems when the person with FMS does seek assistance because they have previously given the appearance that nothing was wrong. 3.2. Function (daily life and work)
The symptoms of fibromyalgia, in addition to causing psychological and emotional distress due to pain and reactions from others, may severely impact daily life and work. As measured by the Arthritis Impact Measurement Scales which assess ability to perform basic daily tasks, persons with FMS have comparable disability levels to persons with rheumatoid arthritis in the areas of mobility, physical activity and activities necessary to run a household (Robbins and Kirmayer, 1990). In a study by Henriksson et ai. (1992), 90% of patients interviewed reported that FMS symptoms interfered with or at least affected daily life. Eighty-four percent of patients had given up one or more activities in the home, work or leisure, 78% had given up all active leisure activities, and the same percentage had changed habits and routines to accommodate their limitations. Generally, people needed to plan everything more, could accomplish less, and needed a greater degree of assistance in performing activities than they had before the onset of FMS. Work can pose one of the greatest challenges because patients with FMS fatigue quickly and are easily affected by stress. In one study of 176 people with fibromyalgia, 17% had stopped working and 30.4% had changed jobs due to FMS (Cathey et aI., 1988). In another study (Henriksson et aI., 1992), 69% of people interviewed stated that FMS had negatively affected their work situation. Cathey et al. (1986), however, found that work disability, as measured by hours worked per week and number of days lost per year due to FMS, is limited. Conflicting information may be due to differences in types of jobs performed.
Silverman and Mason (1992) noted that the workplace environment and the type of work performed can have as much of an effect as the illness itself in terms of ability to perform one's job. People with FMS often experience pain and muscular fatigue during 90% of their day (Henriksson et aI., 1992). Therefore jobs which pose the greatest difficulty are those which require a high degree of physical exertion, static postures or repetitive motion. In typical work task such as twisting the wrist, pushing and pulling, working above the head, lifting from the floor and operating moving machinery (vacuum cleaner), people with FMS were able to perform only 58% of the work performed by normal controls, as compared to people with RA who performed 62% of the work (Cathey et aI., 1988). According to Waylonis et ai. (1994), work tasks which are likely to aggravate symptoms of FMS include tasks which require prolonged static postures, unusual or very long hours, visual and auditory stimulation and cold or drafty environments. Because of their susceptibility to fatigue, jobs which require maintenance of a constant pace or offer few opportunities for breaks may also be difficult for people with fibromyalgia. Jobs which are most easily tolerated involve performance of a variety of light tasks requiring minimal exertion and which are located in a warm, controlled environment (Waylonis et aI., 1994). Office type work as opposed to factory work or jobs involving physical labor, therefore, appear to be best suited to the abilities and limitations of persons with FMS. A factor frequently identified as limiting ability is fatigue (Henriksson et aI., 1992). Limitations in motor performance (weakness and clumsiness), pain triggered by physical effort, and mistrust of one's capacity, due to limited eyesight, decreased judgment and decreased strength, also commonly interfere with task performance (Henriksson, 1995). One wakes up feeling stiff and fatigued, and the pain continues throughout the day. As a result, most tasks and activities tend to be perceived as strenuous and difficult. Getting through the day, therefore, may require tremendous motivation and will power. In assessing work ability,
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Cathey et ai. (1988) assert that functional loss is a result of FMS and that pain, psychological status and disability status (as measured by a standardized instrument, such as the Stanford Health Assessment Questionnaire Disability Index) are the main factors which affect work performance. Self efficacy, which refers to 'the belief that one can manage a specific challenging situation' (Buckelew et aI., 1995, p. 43) and activity level may also affect severity of symptoms and level of dysfunction. Buckelew et ai. reported that selfefficacy (as measured by the Arthritis Self-Efficacy Scale) was a better predictor of self-report pain and activity scores than demographic variables, psychological issues or severity of illness. People with FMS who are working report higher levels of fitness, greater ability to perform daily activities, and lower levels of pain and fatigue (Cathey et aI., 1988; Henriksson et aI., 1992). Henriksson et al. acknowledged that those who hold a job may be able to work because of lower levels of pain and fatigue but hypothesized that the lower pain and fatigue and higher fitness level may be due to the fact that they are working. This is a logical hypothesis based on the correlation of self-efficacy on pain and physical activity (Buckelew et aI., 1995) and based on the fact that exercise and activity have been shown to decrease the symptoms of FMS (McCain, 1986; Goldenberg, 1989). 4. Treatment and strategies Fibromyalgia is a complex and multifaceted syndrome. It is a chronic disorder for which there is no cure. The physiology of FMS is poorly understood and subjective factors, such as stress, psychological wellbeing and self-efficacy, seem to influence physical manifestations and decrease in functional ability. Treatment therefore must be comprehensive and look at not only the physical symptoms, but also at the psychological wellbeing, coping skills and daily routines of the person suffering from FMS. 4.1. Medical treatments
Tricyclics (such as amitriptyline and cycloben-
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zap rene) have an analgesic effect, improve the duration of non-REM sleep, may increase mood, and have been found to have a beneficial effect in reducing FMS symptoms (Goldenberg, 1989). Low doses of adrenal and/ or thyroid hormones may be helpful in reducing many FMS symptoms (Teitelbaum, 1995). Local injections of corticosteroids or analgesics may reduce pain temporarily in specific sites (Baumstark and Buckelew, 1992). In a technique referred to as spray and stretch, the involved muscle is stretched immediately after injection of a local anesthetic (Goldenberg, 1989; National Fibromyalgia Research Association, 1997). Non-steroid anti-inflammatory drugs are found to be ineffective in relieving FMS pain (Goldenberg, 1989; Baumstark and Buckelew, 1992; National Fibromyalgia Research Association, 1997). Underlying structural factors (such as one leg shorter than the other) should be checked and addressed to relieve tension caused by muscle imbalances (Teitelbaum, 1995). 4.2. Other therapeutic interventions
A modality that is strongly supported in alleviation of FMS symptoms is physical exercise in the form of cardiovascular fitness training (CVR) (McCain, 1986; Goldenberg, 1989; Melvin, 1996). Flexibility training helps, but significantly less than CVR (McCain, 1986). A suggested exercise routine consists of 20 min of physical activity, three times per week at 70% of maximum heart rate (National Fibromyalgia Research Association, 1997). Patients should avoid high-impact, highstress exertion, such as jogging, weightlifting or basketball, and choose gentler exercises, such as walking, swimming, T'ai chi, or use of a stationary bicycle (Melvin, 1996; National Fibromyalgia Research Association, 1997). Physical modalities, such as heat, massage, ultrasound, stretching, and transcutaneous nerve stimulation, may help relieve symptoms temporarily. Alternative therapies, such as cranio-sacral or myofascial release, have also been reported to be helpful (National Fibromyalgia Research Association). Changes in diet and nutrition including screening for food allergies, improving diet, and avoiding caffeine and alcohol may help to reduce a
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variety of symptoms (Teitelbaum, 1995; Melvin, 1996; Nye, 1997). A healthful diet which includes vitamin and mineral supplements can improve overall health, proper metabolism, mood and energy level. (Melvin, 1996; Teitelbaum, 1995). Melvin notes that calcium and magnesium supplements are important for muscle metabolism, and adds that eating proteins and carbohydrates at certain times of the day can affect energy, concentration, ability to sleep and quality of sleep as mediated by levels of serotonin (made from tryptophan found in food). Teitelbaum stresses that vitamin and mineral deficiencies, especially of magnesium, iron and vitamin B-12 need to be corrected. Alcohol, caffeine and nicotine should be avoided because they may increase anxiety, interfere with sleep and exacerbate stomach and bowel irritation (Melvin, 1996). Stress management training, including relaxation and/or biofeedback training has been found to promote improvement in all clinical parameters (Baumstark and Buckelew, 1992). Psychotherapy may be helpful for those people experiencing depression or extreme anxiety (Melvin, 1996) and support groups can offer all FMS sufferers education and peer support. Other intervention techniques found to be helpful include cognitive-behavioral therapy techniques (Nye, 1997). 4.3. Patient education and strategies for daily life
Of utmost importance is patient education and counseling. Patients need to understand that FMS is a chronic and poorly understood syndrome, but that it is not a disease. Their bodies will not be permanently damaged, symptoms need not be progressive, and disability need not be permanent (Goldenberg, 1989; Melvin, 1996). Education needs to include advice on body mechanics and posture as well as on changing routines and habits. Henriksson et al. (1992) posit that in addition to trying to decrease pain and normalize sleep, treatment should focus on helping the person with FMS to change daily activity patterns so that she may function successfully in spite of symptoms. Since muscles do not recover well from microtrauma caused by daily wear and tear, use of good
body mechanics, pacing of activities and frequent rest-breaks are crucial. Proper alignment of the body (good posture) and use of good body mechanics during lifting and activity performance will decrease stress and trauma of muscles. Repetitive motions or static postures are damaging to muscles, and people with FMS are especially sensitive to this. Waylonis et al. (1994, p. 114) note that 'too much of anything tends to aggravate the symptoms of fibromyalgia, especially if there are superimposed environmental stresses'. It is important not to maintain the same posture for more than 20 min. One should take breaks, stretch and change position (Henriksson, 1995; National Fibromyalgia Research Association, 1997). Rearrangement of the home or work space so that frequently used items are easily accessible and bending and lifting is minimized can decrease musculoskeletal strain and preserve energy. Scheduling becomes very important. Because of morning stiffness, many people need several hours to get ready in the morning (Henriksson et aI., 1992; Henriksson, 1995). Adequate rest is needed throughout the day so activities and appointments should be spaced out and limited to ensure adequate 'down time'. Some people may even need to lie down for a while or take a nap during the day (Henriksson, 1995). People also need to learn to recognize their limitations and abilities. Too much rest and inactivity can result in deconditioning which can contribute to muscle pain and stiffness (Melvin, 1996). On the other hand, pushing too hard and overdoing it can exacerbate symptoms and set one back for several days. A person with FMS, therefore, needs to maintain a daily activity routine, but cannot easily accommodate extra unforeseen tasks. Asking for help from others, making priorities and being flexible can help to avoid overexertion (Henriksson, 1995). Lifestyle and sometimes work changes will have to be made. A person who is accustomed to maintaining a hectic schedule or a very active lifestyle will need to slow down and make priorities. An evaluation of work tasks will often reveal possible accommodations, such as job or task rotation, increasing frequency of breaks, altering the work space or purchasing equipment. Some
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jobs which consist primarily of high stress or repetitive tasks, however, may not be possible. Occupational activities reported as most aggravating to people with FMS include: word processing, prolonged sitting, prolonged standing and walking, stress, heavy lifting or bending, repeated moving and lifting, prolonged writing, performing tasks with arms extended and unsupported, prolonged telephone use, cold or drafty environments, prolonged driving, bending over work surface, cleaning house and desk work (Waylonis et aI., 1994). It is clear from this list that prolonged maintenance of anyone posture or activity is poorly tolerated. A simple accommodation may therefore be to change positions frequently and to break down tasks so that anyone activity is performed for only a short amount of time. Many of these tasks can be facilitated with simple engineering controls, such as raising the work surface or providing arm support. Other tasks, such as using the telephone, can be made less aggravating through equipment, such as a speaker phone or headset. Some jobs, however, such as an assembly line where one is required to stay in the same position performing the same task for long periods of time, or a job which requires frequent lifting may not be possible. Each person is different. Understanding the nature of a person's symptoms, their personality, their lifestyle, their job requirements and the activities which aggravate their condition is necessary to tailor intervention strategies. 5. Case study 5.1. History
Rachel is a 28-year-old lobbyist for a Washington DC non-profit agency. Her job requires long hours in addition to extra time attending functions in order to network with colleagues and expand contacts. Rachel is highly ambitious and, for years, was actively involved in other professional organizations outside of and in addition to work. From 1993 to 1995, she served as co-chair of a professional society. In 1995, just after getting married, Rachel began to experience extreme fatigue, joint and muscle pain, gastrointestinal problems and frequent fevers with flu-like symp-
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toms. She first hypothesized that her symptoms may have been due to exhaustion resulting from long hours at work and the stress of planning her wedding. Trying to rest and taking occasional days off of work did not seem to help however, and symptoms persisted. She looked fine to others so she began to experience problems at work because she was taking so much time off. Her husband was worried about her illness and tried to be supportive, but could not understand what was going on. Rachel began to push herself to function normally. Her symptoms, along with her stress level, increased. 5.2. Medical testing and intervention
Medical examinations and months of testing yielded no answers. At various times she was told that she may have lupus, mUltiple sclerosis, and that it was 'all in her head'. She was referred for psychological counseling but again, symptoms continued. Finally, after several months, Rachel was referred to a doctor who screened her for GI problems and for blood mineral levels. He found that she had very high levels of yeast in her gastro-intestinal tract and that her vitamin and mineral levels were extremely abnormal. Of specific concern was a major magnesium deficiency which can cause mitral valve prolapse, muscle aches and extreme fatigue. Rachel was put on a strict diet with vitamin and mineral supplements and began taking anti-fungal medications. This doctor also suspected that Rachel was allergic to mold and advised that she eliminate as much mold from her house as possible. The combination of dietary changes, vitamin and mineral supplements and environmental change (eliminating mold) improved symptoms somewhat but Rachel remained incapacitated. In May of 1996, Rachel's symptoms became so bad that her doctor advised that she take a 6month break from work. Rachel's employer agreed and Rachel began to focus exclusively on getting better. In June, she began to see a second doctor. This physician tested Rachel's hormone levels and found that she had abnormally low adrenal and ovarian hormone levels. After further examination and testing, he diagnosed her
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with chronic fatigue syndrome and fibromyalgia. Rachel was given estrogen supplements and low doses of adrenal cortisol. She reports that her symptoms at this point decreased dramatically. Additionally, she began taking low doses of tricyclics and melatonin to improve sleep. 5.3. Other interventions
During her 6-month break, Rachel slept up to 10 h per night and took naps during the day. She began seeing a massage therapist and reported that this helped to decrease stress and muscle aches. She also received acupuncture which, she reported, helped to increase her energy level. She began taking a class in Yoga and meditation and incorporated these into her daily routine. Rachel reported that the stretching and relaxation helped to decrease pain, stiffness and stress. For the first year and a half of her illness, Rachel felt too weak, tired and sore to do any exercise. She had thus become deconditioned and reports that any activity would tire her. As symptoms began to decrease, however, she began to increase her yoga routine and incorporate gentle exercise. Daily activities became more tolerable and her pain and fatigue continued to decrease. 5.4. Lifestyle changes and strategies
At home, Rachel has been able to retain most of her roles with some modifications. She still cooks, but will often cook a lot of food on one day then freeze it to save energy on busy days or when she is tired. She and her husband share light housework and they have hired someone to come in once per week to clean. Rachel is starting to resume some of her old leisure activities, such as going out with friends, hiking and boating, but she finds that she needs to plan her day carefully so that she has enough energy. In January, Rachel returned to work part-time. Although her symptoms had decreased dramatically by the time she returned to work, she quickly found that she could not maintain her old routines, nor could she perform her job in the same manner to which she had become accustomed to.
Changes needed to be made in her environment, her routine and her work habits. 5.4.1. Environmental adaptations One of the first things that Rachel did was to buy a new car. Her commute to work takes 1 h each way and her old car, which was uncomfortable, loud and vibrated heavily when she drove, aggravated her symptoms. She would arrive to work stiff, sore and exhausted. With her new car, she is able to drive to work and still feel relatively rested and ready for the day. Her work space itself needed some alterations as well. She already possessed an ergonomically designed, adjustable chair, an adjustable keyboard and a wrist support. Her office has a window so that she gets natural light but the fluorescent lights gave her headaches. To alleviate this, she purchased a halogen lamp. She also purchased an anti-glare, anti-radiation screen for her computer because she found that the glare from the monitor gave her headaches, and caused her eyes to become bloodshot and fatigued. Her computer monitor sat on the corner of her desk approx. 12 inches from her face. The screen was too low, too close to her face and at a poor angle. She found that computer use gave her a sore neck and tired eyes. She obtained a computer table that supported the screen at the proper height, angle and distance and set her work space up so that the desk and the computer table formed an 'L'. Her job requires frequent phone use so she requested a speaker phone which would eliminate the need to cradle the receiver. She rearranged her desk and office space so that all frequently-used items were easily accessible. She obtained new filing cabinets which were only two drawers high and placed these on a table so that she did not need to bend down or reach up to access files. Finally, she had to get rid of all of her plants because the mold aggravated her allergies. 5.4.2. Work habits One of the first changes that Rachel had to make in her work habits was her clothing. She could not tolerate high-heeled shoes or binding business suits. She now wears loose-fitting, comfortable clothing so that she can sit more com-
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fortably and move with greater ease, and lowheeled shoes to decrease stress on her feet. A symptom frequently reported in FMS is impaired memory and cognition (Melvin, 1996). Rachel reports that this is a problem for her. She notes that she forgets things more easily now than she used to and remarked that 'I've always made lists but now I am the supreme master of list making'. A major adjustment that she has had to make at work is to be vigilant about setting limits. Whereas in the past she frequently took on new projects, she now cannot handle as much work. She has built up to a 4-day work week and feels that she cannot handle any more than this. Rachel reports that this adjustment was very difficult for her. She needed to reassess her abilities and priorities and decide whether she was willing to sacrifice her health and wellbeing for her ambition. She notes that setting limits at work can be very difficult because her co-workers are accustomed to her old habits and, since she looks fine, they have a hard time accepting her new limitations. Rachel has had to work on assertive communication skills and has learned to be firm. In addition to decreasing her work load, Rachel has had to cut extra-curricular professional activities, such as seminars, networking sessions, cocktail parties and fund-raisers. In Washington, where success and ability to accomplish things relies largely on networking, these types of activities can be crucial to career advancement. She has three guiding rules that she uses at work now: (i) don't take on too much; (iO minimize stress; and (iii) maintain constant communication with the boss. The third strategy has been very important. By educating her boss and constantly reminding him of her limitations, while at the same time demonstrating her continued dedication to her work, Rachel has been able to retain the support of her boss. This has been crucial in light of her time off, her limited work capacity and the modifications and equipment that she has requested. 5.4.3. Routine Rachel had been accustomed to waking up 4S min before she had to leave her house. When she tried to resume this routine, she experienced such morning stiffness and extreme fatigue that she
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could not continue. She now gets up 2 h before she has to leave, takes a short walk around her neighborhood then spends approx. 20 min doing her yoga routine. Because of food allergies, she cannot eat wheat, dairy or many standard breakfast foods. Instead of grabbing a bowl of cereal or a bagel as she had done in the past, she now prepares vegetables, tofu or other well-balanced meals for breakfast. In the past, Rachel would often get involved in what she was doing during the day and skip lunch. She now finds that skipping a meal results in her feeling exhausted and unable to concentrate. Scheduling and planning have become crucial elements in her life. 5.5. Summary
Rachel's illness initially resulted in such a degree of disability that she was unable to continue with work or other valued activities. With comprehensive intervention, rest and lifestyle changes, however, she is slowly resuming valued roles and activities. 6. Conclusion Because FMS can manifest in such a variety of symptoms, each person's experience and needs will be very different. Intervention requires the help of many different professionals. Doctors, who have the initial contact with the patient, need to recognize the symptoms, diagnose them correctly and provide drugs to help correct the neurochemical and metabolic imbalances. Psychotherapists can work with a person to decrease depression and anxiety and can help them to develop coping skills. Physical therapists can provide massage, stretching and various modalities to improve flexibility and decrease pain. They can also instruct the client in proper posture and body mechanics and help them to develop an exercise and fitness program. The occupational therapist will look at the physical and psychosocial functioning of the person with FMS. They can help the FMS sufferer to evaluate the ways in which their limitations are interfering with their life and help them to develop coping strategies, change routines and habits, improve body mechanics or
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posture during task performance, or alter the environment to maximize functional ability. A variety of other practitioners, such as nutritionists, massage therapists or acupuncturists, may also play important roles in the rehabilitation and continuing health of the person with FMS. There is no cure for fibromyalgia, but through a comprehensive lifestyle change which involves exercise, stress management, plenty of rest, a good diet and careful daily planning, along with medical and psychological intervention as needed, FMS symptoms can be minimized and a balanced life, including work in most cases, can be maintained. References Baumstark K, Buckelew SP. Fibromyalgia: clinical signs, research findings, treatment implications and future directions. Ann Behav Med 1992;14:282-291. Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome: I. Medical and pathophysiological aspects. Pain 1991 a;45 :227 - 238. Boissevain MD, McCain GA. Toward an integrated understanding of fibromyalgia syndrome: II. Psychological and phenomenological aspects. Pain 1991 b;45:239- 248. Buckelew SP, Murray SE, Hewett JE, Johnson J, Huyser B. Self-efficacy, pain and physical activity among Fibromyalgia subjects. Arthritis Care Res 1995;8:43-50. Cathey MA, Wolfe F, Kleinheksel SM. Functional ability and work status in patients with Fibromyalgia. Arthritis Care Res 1988;1 :85-98. Cathey MA, Wolfe F, Kleinheksel SM, Hawley DJ. Socioeconomic impact of fibrositis: a study of 81 patients with primary fibrositis. Am J Med 1986;81 :78-84. Calbro JJ. Fibromyalgia (fibrositis) in children. Am J Med 1986;81 :57-59. Ganong WF. Review of medical physiology. Norwalk, CT: Appleton and Lange, 1993. Goldenberg DL. Management of fibromyalgia syndrome. Rheum Dis Clin North Am 1989;15:499-513. Henriksson CM. Living with continuous muscular pain -_ .. Patient perspectives: part I: encounters and consequences. Scand J Caring Sci, 1995:67-76.
Henriksson CM, Gundmark I, Bengtsson A, Ek AC. Living with fibromyalgia. Clin J Pain 1992;8:138-144. Littlejohn GO. Fibrositis/fibromyalgia syndrome in the workplace. Rheum Dis Clin North Am 1989;15:45-61. Masi AT, Yunus MB. Concepts of illness in populations as applied to fibromyalgia syndromes. Am J Med 1986;81: 19-25. McCain GA. Role of physical fitness training in the fibrositis/fibromyalgia syndrome. Am J Med 1986;81 :73-77. Melvin JL. Fibromyalgia syndrome: getting healthy. Bethesda, MD: American Occupational Therapy Association, 1996. National Fibromyalgia Research Association (NFRA). NFRA Web Page (http://www.nfra.com). NFRA, PO Box 500, Salem, OR 97302, 1997. Nye DA. A physician's guide to fibromyalgia syndrome. (http://www.eagle.ca/- jewitt/MD-FAQ.txt). David A. Nye, MD, Midelfort Clinic, Eau Claire, WI, 1997. Parker RS. The distracting effects of pain, headaches, and hyper-arousal upon employment after niinor head injury. J Cognit Rehab 1995;13:14-23. Raymond B, Bergland MM. Psychosocial aspects of fibromyalgia syndrome. J Appl Rehabil Couns 1994;25(3):42-46. Robbins JM, Kirmayer U. Illness worry and disability in fibromyalgia syndrome. I nt J Psychiatry Med 1990;20:49-63. Silverman SL, Mason JH. Measuring the functional impact of fibromyalgia. J Musculoskeletal Med 1992;July:15-24. Teitelbaum J. From fatigued to fantastic: a manual for moving beyond chronic fatigue and fibromyalgia. Annapolis MD: Deva Press, 1995. Waylonis GW, Ronan PG, Gordon C. A profile of fibromyalgia in occupational environments. Am J Phys Med Rehab 1994;73: 112-115. Wolfe F. The clinical syndrome of fibrositis. Am J Med 1986;81 :7-14. Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum 1995;38:19-28. Wolfe F, Smythe HA, Yunnis MB et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the multicenter criteria committee. Arthritis Rheum 1990;33:160-172. Wortman RL. Searching for the cause of fibromyalgia: is there a defect in energy metabolism'! Arthritis Rheum 1994;37: 790-793.
