"Dr. Keddy captures the patient's experience of living and coping with suffering in the poignant interviews with twenty women who have fibromyalgia, herself included."
-Dr. Jock Murray, medical humanities and neurology professor, Dalhousie University Medical School
Fibromyalgia, a musculoskeletal condition characterized by widespread chronic pain and fatigue, specific tender points, and sleep disturbance, is a major medical and social concern for physicians, employers, workers' compensation boards, and the insurance industry. But what about those who suffer from the condition?
Drawing on her own experiences as well as the stories of twenty other women living with the challenges of fibromyalgia, Barbara A. Keddy, RN, PhD, discusses current theories of causes and types of treatments. She also speculates about why this condition is more prominent among women than men. By sharing these stories, Keddy highlights the invisibility of the daily difficulties fibromyalgia sufferers face.
With its uniquely personal perspective, Women and Fibromyalgia validates Keddy's experience and offers hope for her and others that they will someday take back control of their bodies.
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Women and FibromyalgiaLiving with an Invisible Dis-ease
By Barbara A. Keddy
iUniverse, Inc.Copyright © 2007 Barbara Keddy
All right reserved.
Chapter OneThe Fibromyalgia Syndrome
The attempt to describe fibromyalgia is usually reduced to a recitation of the most common symptoms. Pain, usually described as "sore all over" or general stiffness; non-restorative sleep, often referred to as "twilight sleep;" often overwhelming fatigue; and depression are among the most commonly cited symptoms that physicians hear. These are often combined with a host of many others, including sensitivities to environmental chemicals, bowel and digestive upsets, headaches, lack of concentration (sometimes referred to as "brain fog"), and muscle cramping. Singly, together, or in various configurations, these symptoms make up what can currently best be described as fibromyalgia syndrome (FMS). They do not in and of themselves make up a specific disease entity, a theory regarding etiology, or a description of cause and effect. Although it is called a disease by some, particularly those who believe it to be a form of arthritis, I will consistently refer to fibromyalgia as a syndrome, because it is more a set of symptoms than a disease that is even minimally understood.
The term "syndrome" is used to describe a condition that has a set of consistent symptoms but, unlike a disease, has no proven cause. Although many have speculated about whether or not FMS begins as a result of an injury, a surgery, a virus, chemical exposure, or psychological trauma, no cause can be stated with certainty. Consequently, the search for symptoms becomes integral to the disease model in an effort to legitimate the actual condition.
FMS is difficult to diagnose, because the only test for its presence is based upon pain in pressure sites, of which there are said to be eighteen paired points on either side of the body. If a person experiences pain upon applying pressure to at least eleven of these paired points, and there is a history of widespread pain for at least three months, then a diagnosis of FMS can be made. The usual kinds of laboratory tests do not reveal abnormalities, therefore pressure-point testing is often considered to be a rather unscientific and nebulous method of diagnosis by those who would prefer more technological and scientific rigor.
It is difficult to ascertain which of the main descriptors just mentioned begin before the others, or if they occur simultaneously. It is the old chicken and egg dilemma. Is concentration difficult because of lack of sleep? Is a person depressed because many activities are curtailed or because of the presence of pain or because of lack of sleep? Does the struggle with pain cause the fatigue? Does the fatigue go hand in hand with depression? Even more perplexing is whether or not all chronic pain is actually FMS. How to unravel these mysteries has been a daunting task for many. It is little wonder that the primary medical focus has been on attempts to treat symptoms rather than on causality, while the scientific research has explored such things as the physiology of muscles and brain patterns that influence sleep and pain in those with the condition. Although there are several theories regarding cause, they are highly speculative and controversial and, in fact, many believe FMS exists only in the person's imagination. For those of us with this agonizing condition, we can say with certainty that the pain is not imagined.
FMS has been called malingering by many. According to Kerr, since 1998 in the United States, "When your MD attends his [sic] continuing medical education courses, fibromyalgia is being described as 'simple aches and pains.'" In my experience, this is no longer quite accurate, as many of the younger, and some older family physicians, seem to know something about and try to be more accepting of FMS as a real, not imagined, condition. However, this condition is often not easily recognized or diagnosed as a complex set of symptoms that together make up a specific syndrome, and many sufferers spend years searching for answers. Misdiagnosis is responsible for loss of work, sleeplessness, chronic suffering from pain, family stress, depression, guilt, and low self-esteem, and unfortunately it often takes months, if not years, before the condition is properly diagnosed.
The prevalence of fibromyalgia is debatable; some speculate that as many as ten million people are affected in North America, while other numbers vary from 2 percent to 3 percent of the population. These estimates are no doubt unreliable because many sufferers go undiagnosed, and it is therefore difficult to obtain exact numbers. We do know that fibromyalgia affects primarily women. The reason for this is not known.
Women and Fibromyalgia
While this book is not intended to criticize physicians, other health professionals, or researchers for their lack of understanding about FMS, it is necessary to point out that women's health in general has been sadly neglected or misrepresented. It follows, therefore, that a condition which affects primarily women and is difficult to diagnose and treat would frustrate most health-care professionals. Fibromyalgia continues to be the invisible disability about which little is known regarding etiology, but the lived experience of those who spend each day with the symptoms and who try to find ways to alleviate some of them or try to be taken seriously is evidence of the disabling life sentence. Leon Chaitow refers to those with fibromyalgia as the "walking wounded" and the "vertically ill." For the women who continue to try to find answers while dealing with the day-to-day stress entailed in their daily activities, it can become almost an overwhelming existence, particularly if the women have jobs inside and outside the home.
It is often pain that most plagues the person suffering from FMS, yet women often minimize the verbal expression of pain. Pain itself is essentially a gender issue since it is widely known that men and women present different ailments with different language to their doctors. A man reporting chronic pain is generally treated more seriously than a woman. A woman's complaints are often denied, minimized, or attributed to her imagination. The dissonance in the discourse of pain reporting between men and women results in different types of responses from the medical profession and it is women who are disadvantaged.
Similarly, most medical research is also gender biased, taking for granted the male as norm. For example, leaders of the now classic, decades-old aspirin study with 25,000 men assumed that the findings could be extrapolated to women and concluded that it was advisable for women as well as men to take a daily dose of aspirin to avoid cardiovascular problems. Yet in October 2003, Harvard University researcher Eva Schernhammer found abnormalities among women who take aspirin. While following 88,000 nurses for eighteen years, she and her team discovered that the incidence of pancreatic cancer in women increased significantly for those who took acetylsalicylic acid regularly. It is understandable that researchers would prefer that their research subjects (laboratory animals or humans) were male since their hormonal fluctuations are easier to control for than those of women. However, that does not excuse the scientific community from the neglect and errors that have been committed in the past with regard to women's health. Even worse has been the negligence with regard to women's propensity to certain conditions.
Is it probable then that, because it is more frequently seen in women, FMS is less likely to be as thoroughly investigated than if it were more common in men? Why are women's voices appropriated so frequently in spite of reported sufferings?
"These aches and pains are part of growing older. After all, you're menopausal. What can you expect?" the resident doctor asked me many years ago. Who believes me? I am a woman with an invisible disability! I look healthy but feel absolutely awful most of the time, particularly when the pain is so intense. Pain is my constant companion.
While little has been known about women's health in general until the past two decades, why FMS is more common in women is a perplexing issue. It is possible that FMS episodes can be precipitated by occupational hazards, yet it is rarely regarded as work related in spite of the frequency of missed work days and the many female workers who are on long-term disability or workers' compensation with this condition in certain occupations. Stress in the workplace accompanied by repetitive motions that are common among female clerical workers, muscular-skeletal injuries because of constant lifting done by those in factories and the service industry or nursing, or work done by women in the home are generally not thought to be contributors to the problems in the first place. In fact, I could speculate that FMS could also be precipitated by such normal biological changes as menstruation, childbirth, or menopause.
While these possibilities are themselves rarely explored in great depth as gendered potential causes of fibromyalgia, I believe there are other more serious structural and psycho-social reasons for its prevalence among women, which are even more complex than the purely psychological common view that women have a dysfunctional response to stress. This perspective lends credence to the myth of the hysterical female psyche. There are probably multiple truths to causation of FMS, and the issue of prevalence among women remains one of the most challenging.
Just how much more prevalent FMS is to women than men is controversial; the ratio estimates vary from 4:1 to 10:1. Nevertheless, it is a serious women's health concern. Women visit doctor's offices for the multiple symptoms, chiropractors, physiotherapists, massage therapists, and acupuncturists for pain more frequently than men, and women report more environmental/chemical sensitivities and illnesses than their male counterparts. What can be done? Who listens to women's voices?
"Since you're postmenopausal you will never have the body you had before, so aches and pains are to be expected; it's nothing serious," says the young medical resident. I feel like I am swimming against the tide. There aren't any answers. This pain is just not the normal aches and pains of aging; it is incapacitating. The fatigue is debilitating.
Theories and Speculations
There are more questions than answers regarding a theoretical understanding of FMS. In fact, the debate among physicians, and especially among rheumatologists, is even controversial. It is interesting to note that FMS has been called the second-highest ranking arthritis disorder in Canada. Presumably it came to be associated with arthritis because FMS involves multiple muscle aches and pains. The word itself is a combination of the Latin roots "fibro" (connective tissue fibers), "my" (muscle), "al" (pain), and "gia" (condition of). The degree of reported prevalence seems to be a major concern of many physicians, particularly because of the consequences of diagnosing people who will have difficulties with long-term disability, workers' compensation, and other third payer insurance benefits. For these reasons, fibromyalgia is a political issue that has the medical profession unprepared for the challenges of diagnosing.
Two Canadian physicians, White and Harth, point out that FMS "is a syndrome of unknown pathogenesis without known specific laboratory markers." In their 1998 critique in the Journal of Rheumatology of an article by Wolfe and his colleagues, they discuss how difficult it is to have accurate statistics about the prevalence of FMS. They criticize Wolfe for saying that FMS "is out of control." They ask how he arrived at his conclusion that 2 percent of the adult population has FMS. In fact, reported numbers of people affected vary considerably. It is indeed very difficult to estimate the prevalence of FMS since so many who suffer from this debilitating yet invisible syndrome do not report it out of fear of being labelled hypochondriacs or because they are unable to find physicians who are willing or knowledgeable enough to present the patient with the diagnosis. The debate among rheumatologists is ongoing and controversial but is rarely as dramatic as the ensuing letters to the editor about "The Fibromyalgia Problem," (my italics) following Wolfe and Hadler's articles in a prestigious journal. All of this shows that because there is a lack of scientific knowledge (defined as that which can be quantified or show cause and effect) regarding etiology, the many similar symptoms of all FMS sufferers is somehow the fault of those who experience them. While there are many conditions for which there are no known definite causes, FMS is treated less as a serious, debilitating disorder than one that is more visible and easier to diagnose. This is true in spite of the fact that there are serious consequences for those who suffer from this debilitating condition, and it is especially true when people are worried about not being believed.
I am sitting with a group of women, all of them nurses, discussing environmental illness and the fact that one Canadian claimant recently lost a case in court. "Do you really believe that all people who say they have environmental illness, chronic fatigue, fibromyalgia really have it? Is there even such a thing?" asked one nurse.
I experience that same disquiet that I do when I am faced with disbelievers. "Does she think I make up FMS?" I think to myself. But, I keep quiet. In fact, I rarely discuss this condition with anyone! To do so is to risk ridicule. I live with pain sometimes so extreme that I have to cry out. I am indeed walking wounded, but I walk quietly.
Devon Starlanyl, a medical doctor, has written extensively about FMS. She believes that it has finally "come out of the closet" and that it has been known and described since the early 1800s by William Balfour, a surgeon in Scotland in 1815. She describes the various names under which it has been known: rheumatism, myalgia, and fibrositis. Wallace and Wallace also give an extensive history of this long-ago noted condition. In an article in Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome, Starlanyl writes that myofascial pain (a localized, painful musculoskeletal condition) is often confused with FMS. She points out that people can have both, but that the pain of FMS is generalized while that of myofascial pain is more regional. However, often one can have both conditions and go undiagnosed. This can lead to extreme frustration as the sufferer frequents more and more doctors, all unable to find specific causes for the pain.
One is left to wonder if our forebears who complained generally of rheumatism were not actually suffering from FMS, myofascial pain, or polymyalgia, which also resembles these conditions and is an inflammation of the large muscles of the body. The Arthritis Foundation calls FMS "soft tissue rheumatism."
I asked the resident physician: "What is wrong with my wrist? It hurts so much, and it's sometimes swollen. See? Here."
"Oh, you must have sprained it sometime," he said while giving it a cursory examination.
"It has been that way off and on for three years and aches constantly!" I tell him. I give up mentioning it to any medical practitioner even though my wrist seems worse under certain conditions. I wonder if it is soft tissue rheumatism, a fancy word for fibromyalgia. It seems to be triggered by barometric changes. Now I never mention my fibromyalgia to a physician.
Types, Characteristics, and Possible Causes of FMS
There are various speculations about the kinds of FMS. Romano postulates there are three: (1) idiopathic or primary FMS, which occurs for unknown reasons as a result of such things as stress or weather changes; (2) secondary FMS which occurs with people who have well-recognized, chronic medical conditions (such as two of the women in this book who also have multiple sclerosis); and (3) posttraumatic FMS, the result of an accident or trauma.
"I can't understand why I can't walk. My knees hurt. I feel sick all over. I have pain everywhere, and my legs won't work. All of this following a long labor and C section, but how can the doctors think I have gout? I'm only twenty-five! You'd think they could find out what is happening to me," I recall thinking after the birth of my first child.
Khraishi believes that nearly half of the people with FMS have developed it following an injury or accident, while the rest have not had a definite injury. Khraishi is careful to note that while there are many theories regarding causes, there are none that are conclusive.
Excerpted from Women and Fibromyalgia by Barbara A. Keddy Copyright © 2007 by Barbara Keddy. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Chapter 1 The Fibromyalgia Syndrome....................1
Chapter 2 Meet the Women....................27
Chapter 3 Pain, Fatigue, Sleeplessness, and Often Depression....................46
Chapter 4 Women and Fibromyalgia....................57
Chapter 5 Triggers, Attacks, and Supports: Women Speak Out....................68
Chapter 6 Treatments But No Cure: What Can Be Done?....................77
Chapter 7 Midlife, Menopause, and Fibromyalgia....................86
Chapter 8 Women Spirit....................94
Chapter 9 Disability: Struggling To Be Believed/Struggling For Economic Security....................102
Chapter 10 Words of Wisdom from Wise Women....................121
Chapter 11 Women Revisited....................127
Fibromyalgia Resource List....................153