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Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses
THE COMPREHENSIVE GUIDE
By Katrina Berne Hunter House Inc., Publishers
Copyright © 2002 Katrina H. Berne, Ph.D.
All right reserved. ISBN: 978-0-89793-280-6
Chapter One
Changed Lives
Jane awoke one morning feeling fluish, with a sore throat, tender lymph nodes, malaise, and achiness. She stayed in bed, assuming she had a minor illness that would resolve in a few days or weeks. An active, energetic, Type A accountant, she assumed she would soon resume her previous responsibilities and activity level. "It's just a bug," she told herself. "I'll be fine in a few days." A week later she had to force herself to resume her busy schedule. She felt exhausted and a bit off balance and spacey, as if her head were filled with cotton. She returned to the office and was embarrassed to admit that tasks that had once been second nature had somehow grown into major challenges. She developed the habit of periodically sneaking off to a storage room to lie down. Sick, frightened, and uncertain, Jane attempted to pass herself off as well. Ultimately, she realized her coping efforts were insufficient and that she was unable to continue her job.
Two years later Jane still spends most of her time in bed. Debilitated by her lingering illness, she is unable to fulfill her former responsibilities at work or home. Her former leisure-time activities-jogging, hiking, racquetball, and dinner parties-have dwindled to almost nothing. Her once-spotless house is in chaos, and she has gained a significant amount of weight although her eating habits have not changed. She often feels helpless and depressed, wondering why she is unable to recover. Several doctors have attributed her symptoms to depression and stress, and Jane is beginning to feel crazy and lazy, almost believing that it's "all in her head," since her medical test results have all been normal.
"Logically, I know this isn't my fault," she says. "I'd never have given up my job, which I loved, my income, my friends, and activities just to stay in bed feeling awful." Minor household chores and basic personal grooming require almost superhuman effort. Jane feels guilty about neglecting her responsibilities, but her symptoms increase when she pushes herself. "I don't understand what happened to me. I'm not myself anymore. I always took care of everything and everyone, and now I can't even function. Numbers don't make a whole lot of sense to me anymore."
Jane wonders whether her life will ever return to normal. "I can handle anything as long as I understand it, but I can't make sense out of feeling like this. My mind can't focus; I ache all over. I'm letting everyone down, and I'm frightened. What's wrong with me? What if I never recover?" Having researched her symptoms, Jane believes she has chronic fatigue syndrome but has not yet received a medical diagnosis.
Rob worked in a chemical plant for fifteen years before he began to notice odd sensations. "I started getting wobbly and lightheaded. Noise bothered me. Light bothered me. I have allergies now, never had them before. And I get sick a lot. I worked around a lot of chemicals, no big deal, but suddenly it was a big deal. I had to quit my job because I couldn't stand to be around the stuff. The company doc didn't have much to say; he just listened and wrote down a few notes. He said I'd get over it, whatever it was. He was dead wrong.
"I don't see the guys from work any more. They don't say it, but I know they think I'm wacko." So did the second doctor he saw, who ran a few tests and told Rob there was nothing wrong with him; Rob just needed to change his attitude. By then Rob was having blinding headaches that lasted for days. "I got sick and dizzy from the smell of gasoline, bleach, insecticides-so many chemicals I can't count them all. I couldn't go to the mall or the movies or any crowded, noisy places. I couldn't drink alcohol anymore, and certain foods make me sick. I'm a real wimp now."
A third doctor told Rob he was depressed and prescribed medication. Another was understanding but baffled. "By then I was having headaches almost every day and my muscles hurt. I thought, this can't be. I've seen four doctors, and they can't find anything wrong. I must be a nut case, just like everyone thinks. I get hot, then cold. I get weak, and I drop things." Rob didn't see any doctors for a long time, but then he read a newspaper article about chemical sensitivities. "A support group hooked me up with a good doctor who diagnosed me with environmental illness and fibromyalgia. I thought those illnesses were a lot of bull-until I got them. Now I feel sorry for anyone who has to go through this."
Driving to work one day, Lydia braked for a red light and was hit from behind by another car. She sustained whiplash and soft-tissue injuries. Over a period of months, the pain spread to her shoulders and back, and she developed frequent headaches, although she did not initially relate these symptoms to the relatively minor collision. "The pain got worse, and I ached from head to toe. I couldn't sleep and began to have daily headaches and a lot of other symptoms. My HMO doc said I might have fibromyalgia, but he just told me to take ibuprofen when it got bad. He didn't understand why I had so many other symptoms, like irritable bowel, 'brain fog,' and insomnia. I had to pay out-of-pocket to see a rheumatologist, who put the picture together. It's posttraumatic fibromyalgia, and he thinks I might have lupus, too."
Lydia describes constant pain and exhaustion. She reports, "My brain isn't working right. I can't balance my checkbook or remember my friends' names. Even little things take a huge mental effort." She is often unable to follow movie plots or concentrate on what she reads. "I read a few pages and don't remember what I've read. I read it again, and it doesn't even look familiar."
Lydia was able to keep her job for two years after the accident, but as the pain, fatigue, and cognitive problems grew more severe, her productive hours dwindled. She is able to work part-time at home at her own pace but does little else. "I spend most of my time in bed or in my recliner, and I have difficulty getting comfortable. I have to move around a lot or the pain becomes unbearable. I only leave the house for medical appointments, physical therapy, and occasional errands-and they wipe me out." Her symptoms flare in cold weather, when the weather changes, following exertion, and sometimes for no apparent reason.
Lydia says, "At the time, I thought the accident was no big deal. I never imagined it could change my life so drastically and permanently. I've read about fibromyalgia, everything I could get my hands on, but I don't think I've ever really accepted it."
"My doctors think I'm a big fake," says fourteen-year-old Sandra. "They said I'm missing too much school and my parents shouldn't let me stay home, like they're babying me. I don't have energy like the other kids, and the school has threatened my parents: 'If you don't send her to school, you're breaking the law.' I can't even sit up most of the time and I can't think right; I don't understand my textbooks or remember anything I read. I used to get straight As. I hate being like this, and I'm being blamed for it. It is totally unfair."
Sandra's parents initially believed the doctor's diagnosis of school phobia and forced Sandra to attend school, watching her become sicker each day. They now realize she is too ill to attend but have been threatened by the school administration.
Sandra has seen nine physicians. "Most of them were clueless," she reports. "Finally, one doctor told me I have chronic fatigue syndrome and that I should rest a lot, but there's no treatment for it and I might not ever get better. That really bummed me out." She has recently seen a more supportive physician who has provided appropriate treatment and educational materials. "I hate being sick, but at least now there's a name for what I have and medicine that helps. Most of my friends have stuck by me, but some are history. It really hurt when they'd roll their eyes like I'm faking or whatever. But I can't really blame them for not understanding; I look okay, but I'm too sick to do the stuff I used to do. We'd be listening to music, and suddenly I'd yell, 'Turn it off!' The noise really got to me, but they didn't understand. It's really hard to live like this."
After battling the school system, Sandra's parents report that she is able to attend two classes per day, is excused from physical education, and is home-tutored for her other classes. Sandra's health remains unpredictable; she looks forward to school but is often is too ill to attend even for a few hours. She enjoys getting together with one or two friends but sometimes doesn't want to see anyone. "Too exhausting," she says. "Nobody gets it. I don't get it. I'm scared because I don't know what will happen to me in the future. I don't even know if I have a future."
Luke complains of weakness and bodywide pain. He has frequent migraine-like headaches and can't seem to get a good night's sleep. Looking back on his life, he cannot remember ever feeling well. "I never had as much energy as the other kids. My parents thought I was lazy, and I believed them. My legs used to hurt, and the doctor said I had growing pains. I thought everyone felt like I did, achy and tired, only they handled it better." Luke now recalls his mother's constant fatigue: "She'd fall asleep in the middle of the day, wherever she was. She never complained, but I knew she took pain pills when it got really bad. She was up all night doing who knows what, and now I understand what she went through."
Over the past few years, Luke has developed increasing pain in his muscles and joints. "I hate to admit this, but doing the least little thing makes me feel like I've climbed a mountain. I ache and sometimes can barely get out of bed, and I haven't done anything out of the ordinary. I have no stamina. I was diagnosed with fibromyalgia when I was twenty-six, and by then I'd had it for twenty-six years-my whole life!" His pain vacillates, but he is never pain free. Like his mother, he doesn't complain much, but those close to him know when he's having a rough day. "He can't get comfortable," says his wife Linda. "He loves to play with the kids but often he can't. He comes home from work and crashes. Some of our friends think he's weird or faking, but I know better." Luke regularly attends a support group, "mostly for moral support, to remind me I'm not the only one who lives this way and that I'm not crazy. I'm fortunate to have a wife and family who understand." Facing a future that is unlikely to be different from the past, Luke adopts a stoic façade that belies his chronic pain.
Jane, Rob, Lydia, Sandra, and Luke share common symptoms and life issues. They and millions like them have encountered disbelief and ridicule. Each has tried to conquer the symptoms; each has failed. Medical treatment offers some symptom relief, but there is no known cure for fibromyalgia syndrome (FMS) or chronic fatigue syndrome (CFS). Both disorders are poorly understood, invisible, chronic illnesses that affect multiple body systems. Overlapping symptoms and abnormalities call into question whether these are two overlapping illnesses, unrelated illnesses, or variants of the same illness.
In addition, these disorders resemble and overlap with many other chronic illnesses. Some are regarded as immune disorders or autoimmune disorders; some are related to known pathogens. Symptoms may be constant or cyclical. Some people with CFS/FMS improve over time, others stay about the same, and some become progressively worse. Research into these poorly understood illnesses has been inconclusive due in part to inadequate funding and contradictory study results. Years of research have left us with more questions than answers.
This book is about CFS and FMS: similarities and differences, symptoms, diagnosis, exacerbations and remissions, possible causal factors, treatment, and coping. The term CFS/FMS is used in discussions of their commonalities; the terms CFS and FMS are used separately when information applies to one but not necessarily the other.
No term is adequate for those with these illnesses. Because the terms "sufferers" and "victims" are objectionable, I have chosen the term "patient" by default.
Chapter Two
Chronic Fatigue Syndrome
CFS is probably the most severe end of a spectrum of fatiguing illnesses with a similar pathogenesis. - Paul Levine, M.D.
Chronic fatigue syndrome (CFS) is a complex illness characterized by incapacitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems, and a constellation of symptoms that often resemble such other disorders as fibromyalgia, mononucleosis, multiple sclerosis, Lyme disease, and postpolio syndrome. Onset may be abrupt or gradual, often following a flulike illness or stressful events. It was originally believed that abrupt onset characterized two-thirds of cases; in retrospect, many patients are able to identify preexisting symptoms of lesser severity, with a trauma triggering full-blown illness. Patients experience multisystem symptoms-notably fatigue, pain, and cognitive dysfunction-with symptoms and their severity varying among patients.
CFS is characterized by a broad range of physiological, cognitive/neurological, and emotional symptoms that persist over time. The most profound symptoms include severe exhaustion, worsened by exertion; neurological/neurocognitive problems; muscle and joint pain; flulike symptoms; new-onset headaches; and sleep disorders. CFS patients frequently manifest environmental sensitivities, sleep disorders, irritable bladder and irritable bowel syndromes, and intolerance to temperature changes. These symptoms tend to wax and wane but are often severely debilitating, usually persisting for years.
Symptoms vary from person to person and fluctuate in severity over time. Cases span those who are able to work a full workweek but do little else to those who are bedfast and completely reliant upon others. Some patients become well, others improve, and a minority worsens over time.
Fatigue is a symptom of a wide range of disorders, including acute and chronic infections, end-stage neoplasia (abnormal cell growth), renal insufficiency, congestive heart failure, depression, and multiple sclerosis. Although fatigue is prominent in CFS, only about 1 percent of people in the general population with persistent fatigue meet the diagnostic criteria for chronic fatigue syndrome. Those with unexplained fatigue of at least six months' duration who do not experience the CFS constellation of symptoms are considered to have "idiopathic fatigue," that is, fatigue of unknown cause. (Streeten 1998).
Described by one patient as a "mystery waiting for a miracle," CFS has no known cause, with a combination of predisposition and infectious, environmental, immunological, neurohormonal, and psychiatric factors playing a role. Although viewed by skeptics as the manifestation of an underlying psychological disorder such as depression, anxiety, or somatization disorder, CFS is a debilitating illness involving symptoms and abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic-pituitary-adrenal (HPA) axis, and is associated with a number of infectious agents. No specific diagnostic test for CFS exists.
CFS crosses all age, gender, and socioeconomic lines, appearing in children, male and female adults, the elderly, and all socioeconomic groups and races. The one time stereotypical CFS patient-the Caucasian, active, middle-aged woman-has not stood up under scrutiny. Until publication of a study by Jason, Richman, and colleagues (1997), incidence in minority groups was underrepresented in prevalence studies. All segments of the population, including children, are at risk, but women in their middle years seem to be most susceptible.
Although sporadic, or endemic, cases occur more frequently than those associated with epidemics, they are poorly documented. Outbreaks of illnesses with CFS-like characteristics have been described since at least the 1700s with some accounts dating back as far as 1400 B.C. Outbreaks have been documented in cooler countries rather than those with tropical climates: England, Scotland, Canada, Switzerland, Japan, Iceland, Australia, New Zealand, Germany, and South Africa. Names for past outbreaks around the world often reflected suspected causes, symptoms, or outbreak locations: the English sweats (with which Anne Boleyn, wife of King Henry VIII, was believed to suffer), neurasthenia, myasthenia, Akureyri or Iceland disease, Royal Free disease, (epidemic) neuromyasthenia, vegetative neuritis, low natural killer cell disease, postviral fatigue syndrome, chronic Epstein-Barr virus, yuppie flu, and chronic fatigue immune dysfunction syndrome. The names CFS and myalgic encephalomyelitis (ME), used in other English-speaking countries, are often used synonymously. Most outbreaks were briefly noted in the medical literature and forgotten; only recently have the links among them been explored.
(Continues...)
Excerpted from Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses by Katrina Berne Copyright © 2002 by Katrina H. Berne, Ph.D.. Excerpted by permission.
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