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Junco's Blog
Wednesday, 16 September 2009
Beware the Fibromyalgia Diagnosis Part Eighteen
Topic: Medical Care
So What are Fibromyalgia and Chronic Fatigue Syndrome Really Anyway?- Part 2 Fibromyalgia as an Illness of Overly Ambitious Middle Class Women From the article “A Mind-Body Approach to the Treatment of Fibromyalgia”: And the fibromyalgia personality, defined as perfectionistic, driven and highly ambitious, may actually indicate an exhaustion of biochemical resources that may contribute to the syndrome. http://www.naturalmatters.net/article-view.asp?article=301 One of the more blatant contradictory and confusing aspects regarding who is more likely to receive the fibromyalgia diagnosis socioeconomically/sociodemographically and personality-wise, are two groups women who are nearly on polar opposite ends of the socioeconomic/sociodemographic spectrum from each other- socioeconomically and educationally disadvantaged low income women living under unstable and potentially dangerous circumstances; and middle class educated and ambitious white collar career women from stable backgrounds and families. But the one thing both groups have in common is somehow certain aspects of their lives as women, being members of the so-called 'weaker sex', is to blame for their medical predicaments. For low income women, their medical lot in life is based upon their being from the bottom rungs of society: lifelong socioeconomically and educationally disadvantaged, having a low income, having bad lifestyle habits which are often viewed as walking hand-in-hand with poverty/lower income (heavy smoking and drinking, drug use and abuse, caffeinated beverage addiction, poor dietary habits, obesity, etc.), and being frequently abused by the men in their lives from childhood straight through adulthood. These women are the ones most often discussed in fibromyalgia literature, particularly since much is made of clinic patient based studies. Yet on the other end of the spectrum are fibromyalgia patients with middle class educational and career values, which are deemed as overly ambitious, workaholic, and perfectionist in nature specifically because these patients are women- women who aren't staying in their traditional 'place', their traditional womanly 'role' in our modern society where women now have greater educational, career and economic opportunities open to them than their grandmothers and great-grandmothers had. It primarily a disease of young to mid-life women, although it can effect children and the elderly as well. Patients are usually in the middle to upper earning brackets: ambitious, hard working, perfectionists- - what I call the “Type AAA” personality. It occurs much less often in men, or so it appears; perhaps they just don't seek help for it as readily as women do. (p.5, “Fibromyalgia”, by Chanchal Cabrerea) A Suitable Job For A Woman Who gets "cured" of fibromyalgia? The lawyer who walks away from her eighty-hour workweek and takes a lesser-paying job at a bank (or becomes the forest ranger she always wanted to be). The middle-aged empty nester who finally throws her chronically unfaithful husband out of the house and returns to the sculpting career she gave up 30 years earlier. from “Fibromyalgia”, by David Edelberg, M.D. http://www.consciouschoice.com/1999/cc1202/fibromyalgia1202.html It's interesting how that works. One woman can be seemingly cured of her fibromyalgia by throwing out her cheating husband and taking up a career to support herself- in this case as a professional artist- which the author obviously views as a suitable and acceptable job for a woman. For the high powered female lawyer (undoubtedly with a nice income well into the six figures), a return to good health comes from giving up her high powered career- an ambitious 'male' career- and accepting, in Dr. Edelberg's words “a lesser-paying job” which he deems more acceptable for her as a woman (with a much lower five-figure income attached). Blaming Fibromyalgia and CFS on the Middle-Class Lifestyle “Helping and hard driving” refers to the over extended lifestyles of people with CFS and FM. They are often working full-time, taking care of families and helping others- and then squeezing even more activities, such as volunteer work and exercise programs, into their remaining hours. People with CFS and FM also tend to be highly responsible, conscientious, and caretaking of others (particularly in FM).Yet they often feel inadequate for failing to meet the high standards they set for themselves, both before and after the onset of their illness... Despite these feelings of inadequacy, many people with CFS and FM will say that they were quite happy with their lives before they became ill. That may be; however, many individuals also led unhealthy, overextended lifestyles before illness onset. When you were well, you probably did a lot to achieve certain things and allowed little time for recuperation and personal reflection; you may have ignored the effects of your busy lifestyle on your health and well-being... Even after the illness begins, your lifestyle may still be overextended- although probably to a lesser degree, and not just in terms of paid employment. You could be spreading yourself too thin with too many commitments. (p. 24, “Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain & More Energy”, by Fred Friedberg, Ph. D) Welcome to contemporary middle-class life in the U.S.A. Adults, both male and female, juggle job and family and financial responsibilities with various other commitments and never feel they have enough time to accomplish everything they need to get done. There's nothing at all unique about this, and since every adult in the U.S. isn't developing Fibromyalgia and/or CFS, blaming these patients' illnesses on contemporary middle-class life is ridiculous. Another related aspect to this is blaming these patients' busy middle-class lifestyles on low-self esteem issues. In turn the self-esteem related overachieving over-ambitiousness causes these women to burn out, resulting in Fibromyalgia, CFS or both. According to this mindset, the reason these patients work so hard and have so many commitments isn't because they are doing their part to be responsible, productive members of society while raising their kids and doing their best to make sure all the bills are paid on time, while trying to sock away some money for their kids' college education funds and their retirement fund, help out their frail elderly relatives, and give back to their community through volunteer/charity work. Nope, they do this because they are merely overcompensating for their low self-worth/low self-esteem and their desire to make up for the fact that someone in their lives (possibly a parent, or a spouse/significant other) didn't or doesn't give them the love and recognition they deserve. More generally, your helping others may be motivated, in part, by your desire to be viewed as a nice or good person. Or, you may be seeking love, approval, and support from people who aren't capable of giving it- or less capable than you like. This amounts to pursuing life goals that are mostly or entirely unattainable, and results in endless frustration, exhaustion, and more stress. (p. 25, Ibid.) The Use of Poorly Defined and Subjective Terms which are Open to Interpretation and Personal Biases Define the terms: overachiever, overly ambitious, overly goal-oriented, overly career/job focused, Type A personality, and workaholic. To you, what makes someone an overachiever, overly ambitious, or a workaholic? Next try defining these terms according to gender. What makes a man an overachiever, overly ambitious, overly -goal and -job oriented? What makes a woman these things? Try asking your friends, family, co-workers, or classmates these questions. How do their answers differ from yours? What about gender biases? For some people it's far more acceptable for a man to be extremely focused on educational, career and economic goals and ambitions than it is for a woman. What could be viewed as overachieving, over-ambitiousness and workaholic type behavior for a woman would be viewed as normal, responsible behavior for a man. The woman is an overachiever, while the man has a good, strong work ethic. Men are the main breadwinners and women are the nurturers whose main focus is supposed to family and the home, with higher education and a career outside the home as a secondary factor in her life. A 'food for thought' question How likely is it that our society would ever accept the following statement as true?: A man who is a reliable hard worker, a responsible family man who puts in long hours on the job, who spends the rest of his time focused on his family, various other commitments, does volunteer work when he can, and squeezes in an hour-long work-out at the gym twice a week is someone who is overachieving because he suffers from low self-esteem issues, and is overcompensating for the fact he didn't receive the love, acceptance and approval he needed from someone in his life, possibly a parent. Obviously this type of language wouldn't be used against men in our society, and wouldn't be used as a so-called psychological explanation for illnesses men are especially prone to developing. Could you ever imagine men's illnesses such as prostate problems and erectile dysfunction being labeled as psychosomatic illnesses caused by emotional burn-out due to overachieving workaholic behavior, low self-esteem, and childhood abuse 'issues'? It will never happen.
Middle Class FMS/CFS Patients as 'Damaged Goods' According to the 'rules', Fibromyalgia and CFS patients must be emotionally damaged in some way or else they'd be perfectly healthy physically. The socioeconomically and educational disadvantaged folks- the low income women from bad homes, with bad personal lifestyle habits, who've been abused all their lives- are damaged in one way. While the middle class women from stable backgrounds are damaged goods in their own way- committing the sin of 'becoming chronically ill while middle-class'. Many of our fibromyalgia patients are overachievers. Prior to becoming ill, they led very busy lives with personal, work, and societal commitments. A perfectionist tendency is evident where every detail of each daily activity is comprehensively thought out an analyzed...When the symptoms of fibromyalgia manifest themselves, fatigue makes it difficult to accomplish all the patient is able to do, which in turn creates feeling of guilt, and inadequacy when the patient cannot perform. This leads to fear of failure and rejection and difficulty handling criticism. Overachievers need to adjust, think innovatively, learn to budget their energy, and delegate responsibility. (p. 150, “All about fibromyalgia” by Daniel J. Wallace, M.D. And Janice Brock Wallace) All illnesses have a psychological component. Although the highly stressed executive may have a bacterial infection such as Helicobacter pylori or excess acid causing his or her ulcer, it helps to remove the three telephones from his or her ear while treating the infections and excess acid. I find that I, and most people with CFS/FMS, are mega-type-A overachievers. As a group, our sensitivity and intuitive abilities are high. We often had low self-esteem as children and tended to seek approval, sometimes from someone who simply was not going to give it... Because of our approval-seeking and low self-esteem, we often drove ourselves to being the best at what we did, or to try to be all things to all people.... As we depleted our energy reserves—sometimes while feeling great on an adrenaline "high"—we encountered the physical trigger to our disease ("blew our fuse"), whether it was an infection, an injury, childbirth, or something else. This trigger, combined with physical problems such as yeast overgrowth or hormonal deficiencies and, often, a genetic tendency to the disease, set the process in motion. (“Am I Crazy? Understanding the Mind-Body Connection in CFS/Fibromyalgia”, by Jacob Teitelbaum M.D., http://www.ei-resource.org/expert-columns/dr.-jacob-teitelbaums-column/understanding-the-mind%11body-connection-in-cfs-and-fibromyalgia/ ) You're Damned If You Do and Damned If You Don't CYDNEY B. I had no idea what FM was. Eight years ago, when I had been treated for rheumatoid arthritis for two years, the rheumatologist sort of offhandedly mentioned fibromyalgia when I asked why my muscles, as well as my joins felt sore. I went home and looked up the word. It sounded a lot less threatening to me at that point than the RA. The rheumatologist seemed to treat it as a side issue and did not offer any treatment at that point. I thought it was a nuisance, but not much more than that. The RA is now mostly in remission. No one has really concluded whether FM has a prodrome (a symptom that offers a premonition of a disease) or a genetic defect, or if it lies smoldering for years until it finally becomes a big enough issue that the sufferer seeks medical care. I had the usual growing pains as a child, mostly in my legs. When I was a single mother in my thirties, I experienced what I would call “lost weekends”. About four times a year I would come home on Friday from a week of work, go to bed so exhausted that I could barely move, and sleep almost nonstop until Sunday at about 6 P.M. I'd get up to feed the kids and check on them periodically, But I was pretty well out cold all weekend. Then I'd sleep a normal night's sleep than go back to work. In my mid-thirties I went to a few doctors complaining to terrible pain in my upper back between my shoulder blades. The pain would be present for weeks, then go away for maybe a year or more, and then come back. I was told- and actually believed- that woman my age often complained of similar back pain and that it was just part of being an “overachiever”. I had a very good job, was a single mother of two accomplished young children, and thus evidently an overachiever, a label I heard repeatedly thereafter and very specifically at the time of my diagnosis with rheumatoid arthritis. In 1991, at age forty-three, I had a car accident. Within months I started having hip pain, for which I sought treatment. I had not injured my hip in the accident. My condition sort of rolled downhill from there. So I fit the usual medical history of someone with FM. The Mayo Clinic pronounced me a “classic case” of fibromyalgia, with the classic history. (pp. 46-47, “Women Living with Fibromyalgia”, by Mari Skelly, Kelley Blewster, and Devin J. Starlanyl) So under the 'rules' of the game, Cydney is negatively typecast as an “overacheiver” because she's a responsible single parent who is working hard to provide for her children and herself. By doing the right thing- being a responsible provider for her children- she's doing the wrong thing. On the other hand, Cydney could just quit her job and go on welfare, move her family into public housing and not be a conscientious parent who is striving so hard to provide for her children's needs. This would give her plenty of time to 'stop and smell the roses', engage in personal 'reflection, contemplation and introspection' and all that other emotion laden stuff that when ignored is deemed to be partly responsible for the existence of this entity called Fibromyalgia; but then she would be criticized for being yet another fibromyalgic woman who falls into the low income/bad neighborhood residing demographic side of the Fibromyalgia Patient Pool. No matter what a woman does she cannot win in this system. Female FMS patients are always somehow made out to be in the wrong regarding their income level, educational level, occupation and lifestyle. They simply cannot win. Want To Cure Your Fibro? Become a Country Girl and Move to A Farm My own experience with FMS has been both personal and professional. I am to say that now, eleven years after the triggering event, I no longer have FMS. To get here I had to question everything about myself and change my life and my lifestyle in many ways. I had to question what I had achieved and attained, what I had learned, my sense of self-worth and measurement, and what I really wanted for my life. I suppose you could call it a midlife crisis come early, or perhaps just an unlucky and tempestuous arrangement of the planets in the heavens, but whatever the cause, on the other side, I am amazed that I continue to function at all considering how lousy I felt most of the time... In discussing this book as a work in progress with my friends, I laughingly said that I had figured out the cure for FMS and that it is simple as changing your life. Although it was said in jest, there is a lot of truth to it. I believe that the fundamental problem in FMS, nothwithstanding genetic, traumatic, all sorts of other contributing factors, is that we are somehow our of balance with our world. We live and work in concrete boxes, and drive our air conditioned cars from one to the other. We may join our other urban dwellers for a walk in the park at lunch hour, but we rarely if ever experience Nature in all her might and glory, as our ancestors once did. We have lost touch with that essential, natural part of ourselves, and our rhythmic connection to the earth has been undermined. Frumkin has identified the therapeutic value of the wilderness experience and the critical importance to overall health of individual contact with the forces of nature. Many aspects of our urban life, from exposure to toxins and pollution to lack of sleep, yield a chronic pattern that our physical bodies can't handle. Prolonged adrenaline and glucocorticoid release as a stress response cannot be sustained by the adrenal glands, and they become exhausted. Thus begins the whole cascade of neuroedocrine dysregulation that characterizes FMS. In a way I see FMS as a disease of the soul, a sort of psychic poisoning by the modern world. My preferred prescription for FMS is “move to the country”. What is needed is a slower, more peaceful pace of life, a healthier environment, and the ability to absorb healing energies from the forest and field. Modern Western society does not honor, support, or encourage us to take the time to smell the roses. We are pressured through school, college, work, and family to do more, achieve more, produce more, be the first or best. We are not taught to look after ourselves, to allow play time and recuperation time and quiet time for reflection and introspection. High levels of electromagnetic pollution, lack of contact with nature and the elements and seasons, excessively hectic and frantic schedules, and more and more pressure on our time- these are all significant contributory factors in the development of FMS. I firmly believe that a more balanced lifestyle incorporating play, rest, and quiet time as well as appropriate and pleasurable work, can ensure significant health improvement at ever level. If this sounds mystical and “New Agey”, I offer no apologies but rather a challenge: try it and see. After struggling for seven years with FMS, attempting to maintain a clinical practice and a retail business, as well as a teaching schedule, I finally admitted defeat and took myself to live on an 150-acre organic herb farm in Virginia. Three years later I can honestly say that I don't have FMS anymore. This is not to say I don't get stiff or achy sometimes, or that my neck doesn't go out occasionally, but a couple of headaches in the past six months is nothing compared to the almost weekly, knockdown, drag-out headaches I used to get a couple of years ago. Moreover, I now enjoy increased energy, deeper sleep, and an altogether greater joie de vivre. (pp. 7- 9, “Fibromyalgia” by Chanchal Cabrera) Through this whole experience, I have reached the conclusion that FMS is caused by a disharmonious lifestyle. Being out of balance or equilibrium at many levels, being dissociated from nature and natural cycles of the seasons, being disconnected from community and self- all of these will contribute to and predispose one toward ill health. People with full-blown FMS have usually been unwell for quite some time before they are diagnosed and, if questioned closely, will usually describe a sense of knowing that they were “out of balance” or “not in optimum health” for months or years before seeking help. Typically, they have ignored or suppressed messages from the body for years, messages saying “I am tired”, “I am stressed, “I am nutritionally depleted”, and so on. Instead of honoring these messages and paying attention, many people take more coffee or sugar, seek pharmaceutical relief, or simply ignore them. Years of stressing the body without giving it adequate exercise or sufficient rest, eating the wrong foods, smoking, drinking-eventually pay their price. (pp. 10-11, Ibid.) So fibromyalgia is a “disease of the soul” which only effects busy middle-class urbanites who have little to no contact with nature... Really? Since when? Urbanites, suburbanites and rural residents are all diagnosed with this condition. The concept that fibromyalgia is a soul-illness of urbanites who can be cured of their ails by moving to small town rural America and spending more time in the wilderness or in a farm field is overly simplistic, silly and simply doesn't reflect reality. The true challenge of fibromyalgia is to love and respect yourself enough to be willing to do whatever it takes to be well. Taking extraordinary care of your body and soul requires great sacrifices sometimes. For me it meant quitting my clinical practice, moving out of the city to live in the country, taking two years off to focus on healing and achieving balance, and, in the process, decreasing my income by more than half. (p. 12, Ibid.)
There's that money issue again... Speaking of Money and Overachieving An excerpt from Freedom From Fibromyalgia: by Nancy Selfridge, M.D., and Franklynn Peterson... Fibromyalgia does strike some youngsters. Dr. Selfridge had it in her teens. But the average age of onset is in middle age. It mostly hits people who've led full lives, compulsively working at a career, having a family, and joining the PTA, often delaying the fun things for later. But once fibromyalgia hits, there is no later. The pain traps you in the moment, and as it digs deeper, the future can become too painful to contemplate....
Some think fibromyalgia is a new disorder. In truth, it's a constellation of symptoms that has been known since before the start of the twentieth century. Many in the media think fibromyalgia is what doctors call a status diagnosis, as trendy as getting your nose fixed or your tummy tucked. In truth, from 10 to 30 percent of all fibromyalgia sufferers are forced to survive on meager Social Security disability payments even though most of them are well-educated, intelligent, goal-oriented overachievers. Those virtues may in fact be their downfall, the prime mover or complicator that eventually triggers fibromyalgia. http://www.booksthatteach.com/books/fibro.htm So Fibromyalgia in the middle class is a disease of people who aren't slackers, who commit the sin of working hard to earn a decent living for themselves and their families. They don't drop out of school, they don't spend their lives on welfare, they don't neglect their families. Instead they focus on obtaining a proper education and having marketable job skills. They work hard, pay the bills, take care of their kids, help their frail and elderly relatives, and some give back to their communities through volunteer work- and this is all viewed as a bad thing. It's viewed as a negative that causes them to become ill. This is simply warped and twisted thinking on the part of these medical researchers, therapists and physicians. It's also rather disturbing since these criticisms are most of often aimed at middle class women. The Fibromyalgia Diagnostic Entity as a Backlash Against Feminism? At a time when the glass ceiling is breaking, women have more educational and career opportunities open to them, and women are starting to out-pace men when it comes to obtaining advanced college degrees, suddenly this diagnostic entity called Fibromyalgia comes to the fore and all things that ail women are now being labeled as “fibromyalgia”. And the causes behind fibromyalgia are the contemporary version of the 19th century concept of female “hysteria”. Middle class women, know and stay in thy lowly 'place' and you will not be cursed with fibromyalgia for daring to have a “man's” educational and career value system. Pot Calling the Kettle Black So who are these medical researchers, doctors, psychotherapists, academics, and authors who criticize middle class white collar female fibromyalgia patients for being educational, career and goal oriented overachievers who are too focused on their jobs and incomes? Let's take a look at the educational backgrounds and careers of the authors whose book and article excerpts appear in this installment of “Beware the Fibromyalgia Diagnosis”: The “A Mind-Body Approach to the Treatment of Fibromyalgia” article is a book review for
“Autogenic Training: A Mind-Body Approach to the Treatment of Fibromyalgia and Chronic Pain Syndrome” by Micah R. Sadigh, PhD which appears on the NaturalMatters.net website: The quote I culled is the last sentence from this paragraph: When the author examines the psychiatric labels often attributed to those with fibromyalgia and chronic pain, we find they are actually clues to a greater understanding of the illness. Though symptoms of depression and anxiety are prevalent in these patients, most patients do not have a psychiatric diagnosis. Studies suggest the explanation is more likely that living with a chronic condition and the inability to conquer the pain would promote the depression and anxiety. And the fibromyalgia personality, defined as perfectionistic, driven and highly ambitious, may actually indicate an exhaustion of biochemical resources that may contribute to the syndrome. http://www.naturalmatters.net/article-view.asp?article=301 Dr. Sadigh's educational and career background reads: Micah Sadigh, Ph.D., FICPM Associate Professor Dr. Micah Sadigh is an associate professor of Psychology at Cedar Crest College. He received his bachelor's degree in Clinical Psychology from Moravian College, and his Masters and Doctorate in Counseling Psychology from Lehigh University. He also completed his postdoctoral work in Behavioral Medicine at Harvard Medical School. Dr. Sadigh's interests lie in clinical, biological, health and existential psychology. His publications include work on sleep disorders, personality disorders, applied psychophysiology, stress and disease, the psychological treatment of pain, post traumatic stress disorder, and an existential approach to the treatment of psychosomatic disorders. He is the author of three books, which includes Autogenic Training: A Mind-Body Approach to the Treatment of Fibromyalgia and Chronic Pain published by Haworth Medical Press. He is also a published poet and an accomplished composer. In addition to his publications, he frequently lectures at state and national conferences. Dr. Sadigh is a fellow of the International College of Psychosomatic Medicine and is a member of the Academy of Psychosomatic Medicine, and the Society for Existential Analysis. Currently, Micah is teaching courses in Systems of Psychotherapy, Health Psychology, Theories of Personality, Stress & Disease, Existential Psychology, History and Systems of Psychology, and Optimal Wellness: A biopsychosocial approach. http://www2.cedarcrest.edu/academic/psy/msadigh.shtm Career background of Dr. David Edelberg, quoted under “A Suitable Job for a Woman”: David Edelberg, M.D. David Edelberg is founder and vice-chairman of American WholeHealth, an assistant professor of medicine at Rush Medical College (Chicago) and section chief of holistic and alternative medicine at Illinois Masonic Medical Center (Chicago). He continues to practice medicine at the American WholeHealth Center in Lincoln Park (Chicago). He has written numerous articles on alternative medicine and was medical editor of the AMA Encyclopedia of Alternative Medicine (publication suspended) and The Healing Power of Vitamins, Minerals and Herbs (Pleasantville, NY, Readers Digest Association, Inc.) and the chief medical consultant for www.wholehealth.com, the Web’s largest integrative medicine site. http://www.americanwellnessnetwork.com/index2.php?option=com_content&do_pdf=1&id=31 Next is Fred Friedberg, Ph D: Dr. Friedberg is President of the International Association for Chronic Fatigue Syndrome. As a licensed clinical psychologist in private practice for 25 years, his office is in Warren, Connecticut. He is also an assistant professor in the Applied Behavioral Medicine Research Institute at Stony Brook University in Stony Brook, NY. Dr. Friedberg is the principal investigator of a fatigue self-management study for people with chronic fatigue and chronic fatigue syndrome funded by the National Institutes of Health (NIH). In addition, he has authored or coauthored six books and a number of scientific articles on chronic fatigue syndrome, fibromyalgia, and chemical sensitivity. Dr. Friedberg has conducted professional workshops on chronic fatigue syndrome and fibromyalgia for the American Psychological Association, the Society of Behavioral Medicine, and the New England Educational Institute. He also served as a clinical consultant to an NIH-funded behavioral treatment trial for chronic fatigue syndrome at DePaul University in Chicago. His published scientific articles have appeared in the Journal of Rheumatology, American Psychologist, Journal of Behavioral Medicine, Journal of Clinical Psychology, Professional Psychology: Research and Practice, Clinical Infectious Diseases, Journal of Neuropsychiatry, Archives of Neurology, Journal of Psychosomatic Research, Cognitive and Behavioral Practice, Journal of Behavior Therapy and Experimental Psychiatry, and the Journal of Chronic Fatigue Syndrome. http://www.lifebalance7.com/index.php?page_id=236 “All About Fibromyalgia” co-authors Daniel J. Wallace M.D. and Janice Brock Wallace M.P.A. : Dan Wallace was raised in the Carthay Circle/Fairfax area of Los Angeles. After attending Fairfax High School, he received his undergraduate and medical education at the University of Southern California, graduating with an MD in 1974. His graduate medical training included an internship at Brown University in Providence, Rhode Island, medical residency at Cedars-Sinai Medical Center in Los Angeles and a fellowship in rheumatology at UCLA. He is Board Certified in both Internal Medicine and Rheumatology. While a fellow at UCLA, he conducted pioneering arthritis research that landed his picture in Time magazine and developed a close relationship with his mentor, Edmund Dubois. Dr Dubois had the largest lupus practice in the United States at the time and was the principal editor of the only lupus textbook. Dr. Wallace entered private practice in 1979 with his father, a cardiologist, but assumed Dr. Dubois’ practice on his passing in 1985. He is the author of 6 medical textbooks (including the last 4 editions of Dubois' Lupus Erythematosus, All About Fibromyalgia, The Lupus Book, All About Osteoarthritis, The New Sjogren's Syndrome Handbook, and Fibromyalgia & Other Central Pain Syndromes), 15 book chapters, and over 200 medical publications. The latter have appeared in the New England Journal of Medicine, Annals of Internal Medicine, the Lancet, Journal of Clinical Investigation, Journal of Immunology, and Journal of the American Medical Association. Wallace’s academic efforts include having served as Chief of Rheumatology at Cedars-Sinai Medical Center, Century City Hospital, and the City of Hope Medical Center in Duarte, CA. He is currently a Clinical Professor of Medicine at the David Geffen School of Medicineat UCLA. His clinical practice is based at Cedars-Sinai, where he is involved in the care of 2,000 lupus patients, the largest practice of its kind in the United States. The Wallace Rheumatic Disease Research Center currently runs over 30 clinical trials for patients with rheumatoid arthritis, lupus, ankylosing spondylitis, psoriatic arthritis and fibromyalgia. The center has been the recipient of 3 National Institute of Health grants. 20% of his time is spent in teaching and research, providing free medical care. Dr. Wallace’s volunteer work has entailed serving as Chairman of the Lupus Foundation of America, the Research and Education Foundation of the American College of Rheumatology, and on the Board of Directors of the United Scleroderma Foundation, the Lupus Research Institute and the American Society for Apheresis. He has served on the Medical Advisory Board of the Sjogren’s Syndrome Foundation and the American Fibromyalgia Syndrome Association. His service has been recognized by being named as among the 200 best doctors in the nation by Town and Country Magazine, best doctors in Los Angeles by Los Angeles Magazine, Best Doctors in Americaeditions since 1994. Dr. Wallace is the recipient of the Lupus Foundation of America Humanitarian Award, Achievement award of the Lupus Research Institute, Spirit Award of the Scleroderma Foundation and the Jane Wyman Humanitarian Award of the Arthritis Foundation. His efforts have raised over $10 million for various rheumatic disease organizations. In addition to his commitments and responsibilities, he is devoted to his wife (and sometimes co-author), Janice Wallace and their 3 children. http://www.danieljwallace.com/ Dr. Wallace's wife and co-author Janice Brock Wallace has a Masters Degree in Public Administration. Dr Jacob Teitelbaum: totalhealth associate editor Jacob Teitelbaum, M.D. is a board certified internist and Medical Director of the Fibromyalgia and Fatigue Centers (www.fibroandfatigue.com) nationally. Having suffered with and overcome these illnesses in 1975, he spent the next 32 years creating, researching, and teaching about effective therapies for fatigue and pain. He is the senior author of the landmark studies “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia—a Placebo-controlled Study” and “Effective Treatment of CFS & Fibromyalgia with D-Ribose”. He lectures internationally. He is also the author of the best-selling books From Fatigued to Fantastic!, Three Steps to Happiness! Healing through Joy, and Pain Free 1-2-3- A Proven Program to Get YOU Pain Free! (McGraw Hill 2006). His Web site can be found at: www.Vitality101.com. http://www.jacobteitelbaum.com/media_downloads/magazines_and_newspapers/dr_t_total_health_magazine.pdf “Women Living with Fibromyalgia” co-authors: Mari Skelly, Kelley Blewster, and Devin J. Starlanyl: Mari Skelly is the author of "Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome", "Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome: Insights from Practitioners and Patients", and co-author of "Women Living With Fibromyalgia" Kelley Blewster is a freelance editor and writer. http://www.spoke.com/info/p8jxtKc/KelleyBlewster She is also the co-owner of several restaurants: http://www.crescent-village.com/press08_retailProfiles.php5 Devin Starlanyl is a physician and FM/CMP (Fibromyalgia/Chronic Myofascial Pain) sufferer who no longer practices medicine, but instead focuses on FM/CMP research and education. Her website can be found here: http://www.sover.net/~devstar/index.htm She is the author of multiple books on Fibromyalgia and Myofascial Pain, including: "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual", now in it's second edition, with co-author Mary Ellen Copeland; she is also the author of "The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain"; and she wrote the forward for "Women Living With Fibromyalgia". She has written articles on the subjects of fibromyalgia and myofascial pain, and she also lectures on these subjects. Fibromyalgia as a “disease of the soul” advocate Chanchal Cabrera's bio from her website: Chanchal Cabrera Chanchal lives with her husband Thierry Vrain in Courtenay on Vancouver Island in BC where they cultivate vegetables and herbs on 7 acres and are building a healing garden retreat center. Visit Innisfreefarm.ca to read more about this. Chanchal has been a member of the National Institute of Medical Herbalists since 1987 and obtained her MSc in herbal medicine at the University of Wales in 2003. She has an extensive background in orthomolecular nutrition and allergy therapy as well as clinical aromatherapy. Chanchal has held the faculty chair in Botanical Medicine at the Boucher Institute of Naturopathic Medicine in New Westminster since 2004 and she serves on the board of advisors of Dominion Herbal College in Burnaby. She publishes widely in professional journals and lectures internationally on medical herbalism, nutrition and health. Since completing her Masters dissertation in the study of herbal medicine for breast cancer, Chanchal has continued to specialize in the treatment and prevention of cancer with herbs and nutrition. She teaches a twice yearly, 6 day long clinical intensive on this for medical professionals and almost 70% of her practice is cancer patients. Chanchal is the author of the book ‘Fibromyalgia - A Journey Toward Healing' published by Contemporary Books. She is a certified Master Gardener and a certified Horticulture Therapist. http://www.botanicalmedicine.org/Tapes/Bios/Cabrera.htm It's Deja Vu All Over Again In 1989, geneticist Anne Moir published a book called “Brain Sex”. Her beliefs regarding gender differences in the brain involves the idea that women's brains are incapable of handing certain concepts such as advanced mathematics and the hard sciences. She advocated that women be steered away from educational and career tracks in these fields. While she herself was a woman educated and employed in the sciences, she claimed she was one of the exceptions to the rule, she was one of the rarer 'special women'- a woman born with a “male brain”- which made her an exception. Therefore her educational and career choices were beyond criticism and reproach under the theories she developed and advocated because she was 'different', she was 'special'. This same concept of criticizing others for doing the same things you do is rather blatant when it comes to criticisms made by both male and female physicians, psychotherapists, medical and psychosocial researchers, academics and authors who are attacking middle class FM/CFS patients for having middle class values, incomes and lifestyles while at the same time these detractors themselves are all educated, ambitious, career oriented individuals who as a result have higher incomes which can afford them comfortable middle class lifestyles. It's a blatant case of Hypocrisy in Action.
Posted by juncohyemalis
at 4:16 PM EDT
Updated: Wednesday, 16 September 2009 6:40 PM EDT
Tuesday, 7 July 2009
Beware the Fibromyalgia Diagnosis Part Seventeen
Topic: Medical Care
So What are Fibromyalgia and Chronic Fatigue Syndrome Really Anyway?- Part 1 That's a rather complicated and controversial question. But ultimately the complex answers to that question clearly illustrate why it is so harmful to paint Fibromyalgia and Chronic Fatigue Syndrome patients as 'damaged goods' individuals from bad families who either are suffering from psychosomatic illnesses masking themselves a physical ailments, or are attention-seeking hypochondriacs who can't deal with their emotional problems. Aside from the abuse theory aspects, these illnesses are controversial for other reasons, and these reasons differ somewhat between the two illnesses. First we'll look at Fibromyalgia. An Analysis of Fibromyalgia as a Diagnostic Entity Fibromyalgia is not formally classified as a Disease. It's classified as a syndrome, a set of symptoms, which its suffers have in common. But unlike other illness, both diseases and syndromes, the criteria used to diagnosis this illness are rather nebulous and inconsistent in nature. The symptoms list varies greatly depending on whose symptoms list you read or follow. There are currently no diagnostic tests used to diagnose the illness beyond the tender points test, which basically assesses whether or not you have achy muscles that hurt to the touch at certain points (trigger points) around your body when you doctor applies pressure to them using his or her thumb. One problem I personally have noted with this test is some of those tender points lie in spots where lymph node clusters are found. A variety of illnesses with symptoms similar to Fibromyalgia can cause swollen and tender lymph nodes in patients. When the nodes are swollen and tender, they hurt when pressed. Classic Fibromyalgia Versus Pseudo Fibromyalgia In the July/August 2006 edition of the Journal of Manipulative and Physiological Therapeutics, Michael J. Schneider, David M. Brady and Stephen M. Perle explain that there are two categories of fibromyalgia: "classic fibromyalgia" and "pseudo fibromyalgia". The symptoms are the same in both cases, but the cause of the problem is different. Both are equally real, debilitating conditions.
Patients who suffer from “classic fibromyalgia” have low serotonin levels. This prevents the muscles from relaxing properly and prevents patients from reaching a deep level of sleep. This is why many doctors prescribe anti-depressant medications for fibromyalgia patients to take at night – to boost serotonin levels while they sleep, so that they will reach a deeper level of sleep and their muscles will relax properly. Serotonin can become depleted following a trauma such as a car accident, surgery, a virus or chronic stress or due to medications or prolonged lack of sleep. Ordinarily the human body should correct this imbalance, but in the case of “classic fibromyalgia,” this does not happen. Research is being conducted to establish whether there is a genetic tendency towards fibromyalgia, which could cause certain people to be unable to re-establish the correct balance of serotonin.
“Pseudo fibromyalgia” refers to a group of conditions or health problems that, when combined, cause fibromyalgia symptoms. For example, if a patient suffers from insomnia, hypermobile joints and I.B.S., they are likely to have all or most fibromyalgia symptoms, but their serotonin levels may be normal.
There are three types of disease or disorder that can lead to “pseudo fibromyalgia”:
Organic diseases
This includes diseases such as Lyme disease, hypothyroidism, rheumatoid arthritis and multiple sclerosis, all of which can cause fibromyalgia symptoms.
Functional disorders
Patients who are malnourished fall into this category, whether their malnourishment is due to poor diet or a medical problem that affects their digestion and absorption of nutrients. Intestinal dysbiosis and liver problems are functional disorders that can lead to fibromyalgia symptoms. Various sleep disorders can also cause pseudo fibromyalgia.
Some forms of poisoning, such as mould toxicity, mercury poisoning or aspartame poisoning can also cause pseudo fibromyalgia. If these forms of poisoning affect serotonin levels then they actually cause classic fibromyalgia, but current research is unclear as to whether these forms of poisoning cause fibromyalgia symptoms by depleting serotonin or by affecting the body in another way. It may indeed be a combination of both.
Musculoskeletal disorders
Fibromyalgia symptoms can be caused by a combination of factors such as multiple trigger points, hypermobile joints, muscle imbalances and problems with the spine. If the spine is damaged or misaligned, not only can this lead to pain and tension, but it can also cause fatigue and paresthesia...
Nowadays serotonin levels can be tested, so it’s worth having that test done in order to find out whether your symptoms are due to “classic” or “pseudo” fibromyalgia....
http://www.fibro.org.uk/index.php?showtopic=18
The hallmark symptoms of Fibromyalgia are widespread chronic aches and pains, fatigue, low serotonin level, an abnormally high level of Substance P in the spinal fluid, and twin sleep disorders- insomnia and the inability to stay in delta wave deep sleep. Testing a patient's serotonin level simply involves running a blood test, but spinal fluid testing and overnight sleep studies are more expensive tests to run. The questions then become: “Will the patient's health insurance cover these tests?”, “Is it financially justifiable to run these tests?”, “Will uninsured and underinsured patients be able to have these tests run?”. Keep in mind the sociodemographic studies of Fibromyalgia patients consistently bear out that more lower income people receive the Fibromyalgia diagnosis, and lower income patients are more likely to be either underinsured and uninsured. These patients are more likely to receive their medical care at health clinics, which often have limited resources. In addition, Fibromyalgia is a current 'fad diagnosis' which further increases anyone's chances of receiving this diagnosis simply because it's become faddish. So there is no way to know how many Fibromyalgia patients truly fit the low serotonin/high substanceP/twin sleep disorder criteria of Classic Fibromyalgia, and how many patients are really Pseudo Fibromyalgia patients who have been misdiagnosed and are actually suffering from another illness with similar symptoms. To even further muddy the waters is the fact that other medical conditions can effect serotonin levels, spinal fluid, and cause sleep disorders. Because of this, many question whether or not Fibromyalgia is truly a distinct medical entity, or is simply a manufactured diagnosis or a wastebasket catch-all term for a wide variety of medical conditions with similarities in symptoms. The answer to this dilemma has not yet been fully determined. The “Build Your Own Illness” Aspects of Fibromyalgia One of the problems with Fibromyalgia is patients are actively encouraged to determine on their own, or maybe with the help from a counselor or psychotherapist , what triggered or caused their illness. Patients are even sometimes supplied a list of “traumatic events” to choose from. They are encouraged to latch onto traumas and hardships which occurred in their lives to serve as (a) trigger(s) or causes(s) and to dismiss the choices which don't apply to them. The self-help literature, thus, creates a highly permissive composite of FMS by presenting a vast list of common symptoms, and detailing symptoms and symptom characteristics that fall outside, or on the margins of, scientific orthodoxy.... The books also create tremendous narrative flexibility through their description of the likely causes of FMS. In the absence of biomedical consensus, the self-help books can be fairly unrestrained in presenting etiological possibilities. This includes describing many causal mechanisms that have never been clinically tested and others that have received no empirical support, despite substantial inquiry... As explained in the books, any number of factors can cause FMS, but the actual relationship between these factors and the onset of FMS is vague and indeterminate. The result is a highly confusing description of FMS onset... This horoscope technique of hooking the reader by attributing life-changing significance to widely shared aspects of human experience is present even in the most medically orthodox of the books... In sum, readers learn that the disorder can be triggered by multiple factors, either internal or external to the individual; it may not have a trigger at all; and weeks, months, or even years can separate “triggers” from symptom onset. Consequently, a specific etiologic agent, risk factor, or disease onset is not required to confirm the existence of FMS. Together with the flexibility in symptomology, the lack of a clear causal framework creates a highly permissive FMS narrative. (pp. 150-152, “The fibromyalgia story”, by Kristin Kay Barker) An example how of this works can be found in the results of this online survey of Fibromyalgia patients: Table 5: Perceived triggering events of FM onset (in descending order of frequency) Event Frequency Chronic stress 41.9% Emotional trauma 31.3% Acute illness 26.7% Physical injury (non-MVA) 17.1% Surgery 16.1% Motor vehicle accident (MVA) 16.1% Emotional and physical abuse as an adult 12.2% Emotional and physical abuse as a child 11.9% Thyroid problems 10.3% Menopause 10.1% Sexual abuse as a child 8.7% Childbirth 7.6% Sexual abuse as adult 2.9% One study of the prevalence of sexual abuse in FM suggested that it might be as high as 57% [49]. The 7.8% prevalence of childhood sexual abuse in the current survey is substantially lower and may reflect differences in "candidness" between an Internet based survey population and one-on-one interviews. A recent telephone based study found no association between FM and sexual abuse, but did report a three-fold increase of FM in women who had been raped. Thus, it was hypothesized that chronic stress, in the form of posttraumatic stress disorder, may mediate the relationship between rape and FM [50].Open Access “An internet survey of 2,596 people with fibromyalgia” by Robert M Bennett*1, Jessie Jones2, Dennis C Turk3, I Jon Russell4 and Lynne Matallana5 http://www.biomedcentral.com/content/pdf/1471-2474-8-27.pdf This listing of physical and sexual abuse/assault, stress, accidents, emotional problems, difficult childbirth, menopause, thyroid problems, surgery, etc. chosen by survey respondents as the trigger behind their illness reflects the standard listings of potential triggering or causative factors which appears in both patient self-help literature, and professional medical and social support caregiver literature. Patients simply choose the cause or causes they feel best reflects them based upon the pre-set choices which they repeatedly hear and/or read about. Yet no one ever explains how it is that an event that happened six months earlier, or six years earlier, or sixteen years earlier can all trigger the same illness right now in these patients; nor why this seems to be suddenly happening en mass to so many people since the 1990s. They cannot or will not explain why the list of triggers varies so greatly- how childhood sex abuse suffered decades ago can cause the same illness in adulthood that someone develops after being in a car accident last year, or develops after spending the past five years dealing with a malfunctioning thyroid. Another “build your own illness” aspect to Fibromyalgia includes which medical conditions and symptoms patients and their healthcare providers choose to ascribe to Fibromyalgia, and which are deemed unrelated. A Permissive Illness Narrative: The Symptoms and Etiology Analysis shows that the FMS narrative presented in self-help books is highly permissive, and this permissiveness is achieved in a variety of ways. For example, perhaps the single most obvious observation regarding the FMS self-help literature is the presentation of extended lists of symptoms that are potentially characteristic of FMS. In 1990 the American College of Rheumatology (ACR) established pain as the sole diagnostic basis for FMS. Shortly after its formal adoption, however, a committee of FMS medical experts recommended some clinical flexibility, allowing for the consideration of many additional symptoms when entertaining the suitability of an FMS diagnosis. Thus, in clinical practice, no longer are there any strict necessary or sufficient criteria for FMS, but, rather, some degree of interpretive flexibility exists. Self-help books take liberties with this lack of precise diagnostic criteria. (pp. 145-146, “The fibromyalgia story”, by Kristin Kay Barker) A Sampling of Fibromyalgia Symptoms and Co-conditions WebMD's list of Fibromyalgia symptoms: Moderate or severe fatigue and decreased energy Insomnia or waking up feeling just as tired as when you went to sleep Stiffness upon waking or after staying in one position for too long Difficulty remembering, concentrating, and performing simple mental tasks Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome) Tension or migraine headaches Jaw and facial tenderness Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold Feeling anxious or depressed Numbness or tingling in the face, arms, hands, legs, or feet Increase in urinary urgency or frequency (irritable bladder) Reduced tolerance for exercise and muscle pain after exercise A feeling of swelling (without actual swelling) in the hands and feet Painful menstrual periods Dizziness
Fibromyalgia symptoms may intensify depending on the time of day -- morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time. They may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors. If the condition is not diagnosed and treated early, symptoms can go on indefinitely, or they may disappear for months and then recur. (http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms) Questions: How is it that the body knows to be at its best between 11 am and 3 pm, and this is supposed to be consistent among patients? How do our twice yearly fall-back and spring-ahead time changes cycling between Daylight Savings Time and Standard Time factor into this equation? From About.com's Chronic Fatigue/Fibromyalgia section: FIBROMYALGIA SYMPTOMS CHECKLIST General Fibromyalgia Symptoms Delayed reactions to physical exertion or stressful events Other family members with fibromyalgia (genetic predisposition) Sweats Unexplained weight gain or loss Cravings for carbohydrate and chocolate Headaches & migraines
Muscle & Tissue-Related Fibromyalgia Symptoms Sinus & Allergy-Related Fibromyalgia Symptoms Sleep-Related Fibromyalgia Symptoms Reproductive Fibromyalgia Symptoms Abdominal & Digestive Fibromyalgia Symptoms Cognitive (fibrofog) Fibromyalgia Symptoms Difficulty speaking known words, other language impairments (dysphasia) Directional disorientation Loss of ability to distinguish some shades of colors Short-term memory impairment Confusion Trouble concentrating Staring into space before brain "kicks in" Inability to recognize familiar surroundings
Sensory Fibromyalgia Symptoms Sensitivity to odors Sensitivity to pressure changes, temperature & humidity Sensitivity to light Sensitivity to noise Night driving difficulty Sensory overload Paresthesias in the upper limbs (tingling or burning sensations)
Emotional Fibromyalgia Symptoms Panic attacks Depression (as an overlapping condition) Tendency to cry easily Free-floating anxiety (not associated with situation or object) Mood swings Unaccountable irritability
Heart-Related Fibromyalgia Symptoms Mitral valve prolapse (as an overlapping condition) Rapid, fluttery, irregular heartbeat Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
Skin, Hair & Nail-Related Fibromyalgia Symptoms Pronounced nail ridges Nails that curve under Mottled skin Bruising or scaring easily Hair loss (temporary) Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions)
Miscellaneous Fibromyalgia Symptoms (From Devin Starlanyl's list of Fibromyalgia symptoms, posted at: http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm) The “50 Signs of Fibromyalgia” list is commonly passed around online among patients in email and in groups/message boards: 50 Signs of Fibromyalgia:
1. pain
2. fatigue
3. sleep disorder
4. morning stiffness
5. cognitive or memory impairment
6. irritable bowel
7. chronic headaches
8. TMJ syndrome
9. numbness and tingling sensation
10. muscle twitching
11. skin sensitivities
12. dry eyes and mouth
13. dizziness
14. allergic symptoms
15. mitral valve prolapse
16. heel or arch pain
17. brain fatigue
18. painful periods
19. chest pains, noncardiac
20. depression
21. panic attacks
22. irritable bladder
23. multiple chemical sensitivities
24. joint hypermobility
25. suicidal
26. personality changes
27. lightheadedness
28. disequilibrium
29. severe muscle weakness
30. intolerance of bright lights
31. alteration of taste, smell, hearing
32. low frequency, sensorineural hearing loss
33. decreased painful sound threshold
34. ringing in the ears
35. exaggerated involuntary rapid eye movement
36. changes in visual acuity
37. intolerance of alcohol
38. enhancement of medication side effects
39. intolerance of previously tolerated medications
40. severe nasal and other allergies possible sinus infections
41. weight change (gain)
42. muscle and joint aches
43. night sweats
44. heart palpitations 45. muscle spasms
46. Raynaud's-like symptoms
47. carpal tunnel syndrome
48. heartburn
49. difficulty swallowing
50. interstitial cystitis (http://www.fms-help.com/signs.htm) From the Mayo Clinic website: Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist. Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include: Back of the head Between shoulder blades Top of shoulders Front sides of neck Upper chest Outer elbows Upper hips Sides of hips Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea. Co-existing conditions
Many people who have fibromyalgia also may have: (http://www.mayoclinic.com/health/fibromyalgia/ds00079/dsection=symptoms) From Fibrohugs.com- “Fibromyalgia commonly identified Symptoms (63)” Posted by Perdita (B.C.) http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10301&Itemid=238: I compiled this list from my doctor's office Fibro Awareness pamphlet (Dr. L. Lacroix), the British Columbia Fibromyalgia Society, and from correlating fibro symptoms discovered here on the Fibrohugs forums and chats. You don't need ALL of these symptoms to have FMS, but chances are you have a great portion of them. Accompanying symptoms are used to positively diagnose one with FMS if the patient shows signs of FMS but doesn't have the 11 sensitive tender points that are used for diagnosis. Deep muscle acupuncture along the tender points and tender point meridians can also be used to positively diagnose FMS, even though most countries and insurance agencies will not take an acupuncturists diagnosis unless it is backed by a medical doctor.... Please DON'T SELF DIAGNOSE! Use this list to help journal your symptoms and any progression you feel you are experiencing and CONSULT WITH YOUR DOCTOR. If your doctor isn't willing to even consider looking into your problems, then "shop around." But be sure to have appropriate medical consultation on your health. PHYSIOLOGICAL PROBLEMS:
__ recurrent flu-like illness
__ recurrent sore throats, red and injected
__ painful lymph nodes under the arms and neck
__ muscle and joint aches with tender and trigger points - up to 18 of them
__ night sweats and fever
__ severe nasal and other allergies
__ irritable bowel syndrome (IBS)
__ weight change - usually gain
__ heart palpitations
__ mitral valve prolapse
__ severe PMS
__ yeast infections
__ rashes and itching
__ uncomfortable or frequent urination
__ interstitial bladder cystitis
__ chest pains (non-cardiac)
__ temporomandibular joint dysfunction (in the jaw)
__ hair loss
__ carpal tunnel syndrome
__ cold hands and feet
__ dry eyes and mouth
__ severe and debilitating fatigue
__ widespread pain
__ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)
__ numbness in the limbs, not painful like pins & needles
__ painful swelling in the hands, legs, feet, neck
__ GERDs (gastro-esophageal reflux disorder)
__ “growing pains” start in childhood and teens, continue into adulthood
__ widespread body pain during/after physical exertion Found at http://www.fibrohugs.org/index.php?option=com_content&task=view&id=10301&Itemid=34 COGNITIVE FUNCTION PROBLEMS:
__ attention deficit disorder
__ spatial disorientation
__ calculation difficulties
__ memory disturbance
__ communication difficulties (problems speaking, confusing words) PSYCHOLOGICAL PROBLEMS:
__ depression
__ anxiety and panic attacks
__ personality changes, usually for the worse
__ emotional lability (mood swings) OTHER NERVOUS SYSTEM PROBLEMS:
__ sleep disturbances
__ headaches
__ changes in visual acuity
__ numb or tingling feelings
__ burning sensations
__ light headedness
__ feeling 'spaced out'
__ desequilibrium
__ frequent unusual nightmares and disturbing dreams
__ tinnitus (ringing in the ears)
__ difficulty in moving your tongue to speak
__ severe muscle weakness
__ susceptibility to muscle, tendon, ligament injury
__ intolerance to bright lights
__ intolerance to alcohol
__ intolerance to sound
__ extreme sensitivity to medications and their side-effects
__ alteration of taste, smell, and hearing
__ insomnia
__ inability to achieve stage 4 restorative sleep
__ morning stiffness in the muscles and joints
__ restless leg syndrome
__ muscle spasms
__ muscle quakiness and shivering during/after activity or exercise
__ sleep paralysis (related to stage 4 sleep deprivation) From a patient's website: Symptoms of Fibromyalgia: Muscle pain -- Poor Sleep -- Fatigue -- Cold Intolerance -- Stiffness -- Headaches-- Numbness -- Joint Pain -- Weakness -- Tendinitis -- Swelling --Tingling -- Tightening/constricting of the blood vessels -- Skin mottling -- Nail ridges -- Hair loss -- Fevers -- Low body temperature -- Bodywide "achiness" -- Allergies-- Muscle cramps -- Muscle spasms -- Light sensitivity -- Sensitive hearing -- Fluctuating blood pressure -- Double/blurred/changing vision -- Dizziness -- Esophageal reflux -- Menstrual problems (severe cramping, delayed/irregular/late/missed periods, long periods with delayed bleeding, membranous flow, blood clots) -- Impotence -- Electromagnetic sensitivity -- Motor coordination problems/clumsiness -- Confusion -- Cognitive impairment Possible Coexisting Conditions: Irritable Bowl Syndrome (IBS) -- Mitral Valve Prolapse (MVP) -- Temporomandibular Joint Dysfunction (TMJ) -- Carpel Tunnel Syndrome -- Cerebral Palsy -- Depression -- HIV -- Hypoglycemia -- Hypometabilism -- Hypermobility Syndrome -- Lupus -- Multiple Chemical Sensitivities --Multiple Sclerosis -- Osteoarthritis -- Parkinson's Disease -- Post-Polio Syndrome (PPS) -- Raynaud's Phenomenon -- Reflex Sympathetic Dystrophy Syndrome -- Rheumatoid Arthritis -- Yeast Infections -- Restless Legs Syndrome ( http://www.geocities.com/area51/chamber/5358/fm.html ) The symptoms and related co-conditions lists, which are included on the various Fibromyalgia support websites and in related patient and care provider literature, alter and grow with time. The various symptoms and medical co-conditions which are actively being linked with fibromyalgia can and do occur naturally on their own, but if a person who experiences certain 'other' medical conditions is diagnosed with fibromyalgia, suddenly those 'other' conditions are made part of the total 'fibromyalgia experience'. Many of these listed symptoms are common with assorted other medical conditions and diseases, which leads open the possibility of a patient misdiagnosis of “fibromyalgia”. Having blot clots in one's menstrual flow is a completely normal event and shouldn't even be listed as a fibromyalgia-based “symptom”. Some so-called “symptoms”, such as: craving carbohydrate filled foods and chocolate, having hemorrhoids, split cuticles and finger- or toe-nails which curve under, or ingrown hairs- also seem rather silly to attribute to this condition. Other symptoms: flu-like illnesses, fevers, chills, night sweats, swollen and tender lymph nodes sound very much the result of an active infection-either viral or bacterial in nature. Reading the ever-growing list of symptoms and related co-conditions begs the question: Are all of these people actually suffering from the same illness or are multiple illnesses/diseases being lumped together under the umbrella label of “Fibromyalgia”? Yet another unfortunate aspect of the “build your own illness” narrative is the misunderstanding of the cause-and-effect relationship between cognitive and neurological symptoms found in some of these patients and separate cognitive and neurological conditions which share some of these symptoms. Good examples of this include incorrectly labeling cognitive impairments and memory and concentration problems (brain fog) experienced by some Fibromyalgia patients as being formerly undiagnosed life-long ADD/ADHD; and equating over-stimulation of the nervous system resulting in sensitives to light, sound, touch etc. and migraine headache suffering with autism/Asperger's Syndrome. Sometimes Fibromyalgia is wrongly attributed to or is blamed on ADD/ADHD and is sometimes even linked to autism/Aspergers due to in-common cognitive and neurological symptoms. But these conditions are not simply the same. A minority in the medical community push for giving ADD/ADHD stimulant medications to Fibromyalgia patients to chemically by-pass the pain and brain fog symptoms. But these stimulant medications contain warnings stating they are not to be given to patients with cardiac conditions. Considering some Fibromyalgia patients have cardiac symptoms- heart palpitations, irregular beats (arrhythmias), the development of a prolapsed mitral valve- and some also experience breathing difficulties at times, patients should be wary of this alternative treatment track especially if they have cardiopulmonary symptoms and conditions. For the same reason, anyone diagnosed with both Fibromyalgia and CFS/CFIDS/ME should be wary of this ADD/ADHD-Fibromyalgia stimulant treatment protocol because there are studies linking the severe exercise-related fatigue commonly found in CFS/CFIDS/ME patients with cardiac insufficiency. The pro-ADD/ADHD/Fibromyalgia treatment protocol minority doesn't warn of the potential adverse reactions and medical contraindications of using ADD/ADHD stimulant medications among those with cardiac symptoms and conditions. Instead, the message put forth is this treatment protocol is safe and appropriate for everyone, which is simply untrue. Caveat Emptor.
Posted by juncohyemalis
at 2:23 AM EDT
Updated: Tuesday, 7 July 2009 2:47 AM EDT
Sunday, 5 July 2009
The Great Imitators Part One
Topic: Medical Care
The Great Imitators are those pesky diseases which have symptoms in common with other conditions. This makes the job of determining the proper diagnosis a bit more tricky in some cases. The Great Imitator label was originally applied to Syphilis, but now equally fits and applies to other diseases as well including Lyme Disease, Fibromyalgia, Lupus, MS, CFS/CFIDS/ME, AIDS and various others. The great imitators are often bacterial or viral in origin. Some of these conditions are better understood than others, and the medical research continues.... Some interesting information about the great imitators which will be explored in this series includes: People with Lyme Disease and Lupus can test false positive for Syphilis Some of these great imitator illnesses have similar effects on the heart Patients with Lyme can develop brain lesions and myelin damage just like patients with Multiple Sclerosis MS may very well be a spirochete bacterial infection-caused disease Patients with Lupus appear less likely to get HIV/AIDS Patients with CFIDS/ME develop defective red blood cells Patients who have CFIDS/ME or chronic Epstein Barr are at a higher risk for developing lymphoma. And interestingly, sometimes lymphoma is misdiagnosed as Fibromyalgia The Lymerix Lyme vaccine was pulled from the market following a class action lawsuit by injured patients, because people who have the gene HLA-DR4 can develop permanent and debilitating autoimmune illnesses after receiving the vaccinations There are links between the Lyme Borrelia bacteria and some cases of ALS, Autism and Alzheimer's Disease Some patients with Lupus are diagnosed with Fibromyalgia as a co-condition.
Posted by juncohyemalis
at 12:48 PM EDT
Beware The Fibromyalgia Diagnosis Part Sixteen
Topic: Medical Care
The Dangers of Designating Fibromyalgia and Chronic Fatigue Syndrome as “Abuse Illnesses”- Part 2 Fibromyalgia and Chronic Fatigue Syndrome as forms of Hysteria Sigmund Freud once asked “what do women want?” and the behavior of the psychotherapists who followed his model showed how poorly they understood. The way that psychiatry and psychology diagnostic manuals are written today, women with chronic pain are expressly singled out as much more likely to have psychosomatic, rather than real pain conditions. The long list of very real chronic illnesses once thought to be psychiatric demonstrates that this is a position of prejudice, not science. It is institutionalized misdiagnosis, based in an ancient belief that the womb makes women hysterical. To treat women as dysfunctional males and so to disregard the health and welfare of half the human race not only damages the scientific efforts to understand the medical health of women, but of men as well. To fail to understand women’s health is to fail to understand human health. Although women are more likely to have autoimmune diseases and chronic pain conditions, men have these conditions and are treated with prejudice too. All people in pain can potentially be treated as if they have a mental health problem, or drug problem, instead of a physical condition by doctors. All these patients have families and communities who are impacted by these conditions. When pain and chronic illnesses are dismissed, misdiagnosed as mental conditions, and under-treated, everyone suffers. (“A Manifesto for May 12: What do we want?”, by Stephanie Hall http://sa-hall.livejournal.com/16752.html) Hysteria may likewise be interpreted as the product of a paranoid-schizoid dynamic in which individuals who have split off and disowned their own aggressive and destructive impulses suffer from phantasies of attack and an abiding sense of being made ill by hostile forces, either within the body (as in “fibromyalgia syndrome” and “chronic fatigue syndrome”) or outside it in the environment (as in “environmental illness” or “multiple chemical sensitivity”), but in any case from outside the self. We have described the tendency of hysteric patients to regard their symptoms as residing in the body but unrelated to the self, that is, existing as a foreign, invading force, in but not of the patient. In paranoid-schizoid functioning, the subject may disown or evacuate his internal bad self and objects, project the split-off contents and, as a consequence, perceive the external world as independently bad and dangerous. To complicate matters further, in an attempt to manage the external persecutors thus created, he may reintroject them. Segal’s observation regarding the introjection of persecutors and subsequent hypochondria (in which the persecutors are felt to be attacking from within the body) illustrates the conjunction between paranoia and hysteria... According to Segal, “The projection of bad feelings and bad parts of the self outwards produces external persecution. The reintrojection of persecutors gives rise to hypochondrical anxiety”... While there are grounds for maintaining the distinction between hypochondria and hysteria, viewing the former as one type or manifestation of the latter, it is reasonable to extrapolate a reciprocal connection between paranoia and hysteria by way of this connection between paranoia and hypochondrical anxiety. Both involve projection and a resulting experience of attack and persecution, in one case from without, in the other from within. But the psychoanalytic literature has tended to treat paranoia and hysteria as discrete conditions, and these citations from Segal (1964) may be one of the few places where paranoia and hypochondria, and correspondingly hysteria, are explicitly brought together. (pp. 37-39, Fugitives From Guilt: Postmodern De-Moralization and the New Hysterias”, by Donald L. Carveth, Ph.D. & Jean Hantman Carveth, Ph.D., http://www.yorku.ca/dcarveth/Hysteria.htm) Fibromyalgia as an 'oppression of women' based-illness Most important, although classified as a‘chronic’ illness, it can be so completely treated that I’d almost be tempted to use the word "cured." The only problem with stating "cure" is that if the same circumstances that brought the disease in the first place manage to return — resetting the stage, so to speak — then symptoms begin reappearing. If, however, someone with fibromyalgia learns from the experience, deals with whatever set the stage, and makes appropriate life changes, the condition can disappear. Forever... Symptoms as Messages
When annoying, persistent, or especially uncomfortable sensations persist in the body, we call these sensations "symptoms." Sneezing is a symptom but may not mean a disease. Most symptoms, in fact, do not mean "disease," and do go away by themselves. Even longstanding symptoms are frequently just messages that your body would like you to heed. Painful knee when you jog? Stop running for a while. Get a headache at four o’clock every day? Regard the headache as a message, and think about changing your lunch. If you change your habit and the headache vanishes, you’ve learned something and found a way to improve your health. Now let’s apply some of this "body message" stuff to fibromyalgia. That the condition afflicts mostly females begs us to hunt for some meaning. There’s a message here...and it’s really no surprise. After years of listening to life stories from patients of both sexes, I am thoroughly convinced that women go through life both experiencing and then internalizing more day-to-day stress than any male could ever imagine. Any historically oriented feminist will tell you the situation: by being compelled to share the planet with creatures whose testosterone hard wires aggressiveness, and by being deprived of sufficient muscle mass to defend themselves, women, from the moment they are born, struggle, endure, and too often must submit to a hostile, polluted, threatening world they might never ever have created had they been in charge.
So here is a sweeping generalization about fibromyalgia: virtually every single case I’ve encountered in my practice has emerged when the background "white noise" of chronic stress either becomes intolerable or is escalated by new events in a person’s life. And, to take this one step further, fibromyalgia is not so much a disease with a definable villain (like a virus, or an immune problem) but rather a physical reaction to stress that spins out of control. Fibromyalgia is a system breakdown, sort of like what would happen to your car engine if you floored the accelerator with the transmission in neutral. Stressed men tend to get heart attacks and ulcers, or languish in depression. Stressed women might be vulnerable to fibromyalgia. The Body Reacts to Industrial Strength Stress
First, let’s talk about muscle pain. Here’s a piece of troubling data: a study from England showed that about 15 percent of women with fibromyalgia came from abusive homes. Imagine yourself in this painful scene: you’re a child with an alcoholic, violent, and unpredictable father who is arriving home from the pub. You’re seven years old and one of the household gods is angry. You just might get hurt. You brace yourself for the worst. Stop now and picture what "brace yourself" means: body into a protective position, muscles taut, head down, shoulders forward, back rigid to ward off real (or imagined) blows. Whether or not you actually get hit, you assume this basic instinctive posture. Protective posture is present in children of both sexes, but some of us carry it into adult life. ("I carry all my stress in my neck"). We instinctively tighten our necks and upper backs when attempting to protect ourselves from stressors, physical and emotional, perhaps warding off the blows from life itself. Eventually, something changes in the muscles themselves: locked in a position to protect the body, key points, the "tender points" are palpable areas that really hurt when touched. The chronic stress and the chronically "locked" position have somehow changed the muscles.
But although the neck and back are fibromyalgia’s most painful points, sufferers report discomfort throughout the body, as if all the muscles were in spasm. In fact, they are. Intense muscle contractions are one of the "correct" responses to a sudden unexpected stress, through a complicated but involuntary pathway involving both the nervous and endocrine systems. An example: you’re walking down the street and suddenly confronted by a mugger. There’s an immediate involuntary transmission of information through your nervous system ("DANGER!"), relayed from your brain, down through your pituitary (or‘master’) gland, to release adrenaline and cortisol from your adrenal glands. These tighten your muscles in preparation for fighting or running away. Your adrenals: two bean sized glands atop the kidneys, which release a variety of hormones during any stress. However, we only need these hormones for special occasions, as we’re not constantly getting mugged. Or are we?
Remember, stress — real unadulterated stress — may well be the unwanted traveling companion for many of us, especially women. Going through a day expecting to be physically or emotionally attacked, or simply trying to survive in a world where there’s no sense of control, one’s adrenal gland switch stays "on." What follows are just about every one of the accompanying symptoms of fibromyalgia.
Here’s a list of what chronic and inappropriate cortisol and adrenaline secretion can cause: adrenal exhaustion (fatigue, a weakened immune system, low blood pressure); brain fog (excessive cortisol is toxic to brain cells); weakened thyroid (fatigue, cold intolerance, weight gain despite calorie restriction); "fear" responses (cold hands and feet, palpitations, chronic anxiety, tightness in the throat, insomnia, irritable bowel syndrome). In turn, the weakened immune system predisposes to recurrent colds, vaginal yeast infections, sinusitis, and intestinal parasites. In other words, all the symptoms of fibromyalgia... Again, I can only repeat...virtually every case of fibromyalgia I’ve seen begins with a series of heightened stress "events," usually uncontrollable, as stressors often are, and just endured. Here’s a typical comment: "Well, I’m always a wreck, but the year before my‘fibro’ began was the worst year of my life. My husband lost his job and I had to go back to work full-time. After a slow course, my mother died of cancer. I took care of her without any help from my brothers. Then I discovered my teenager doing drugs. I can’t believe I made it through the year."... Who gets "cured" of fibromyalgia? The lawyer who walks away from her eighty-hour workweek and takes a lesser-paying job at a bank (or becomes the forest ranger she always wanted to be). The middle-aged empty nester who finally throws her chronically unfaithful husband out of the house and returns to the sculpting career she gave up 30 years earlier. The victim of childhood sexual abuse who, through counseling and support, need not forgive her abuser, but at least can move on with her life. (“Fibromyalgia”, by David Edelberg, M.D. http://www.consciouschoice.com/1999/cc1202/fibromyalgia1202.html ) The Fibromyalgia Diagnosis and Socioeconomics and Criminology There's an underlying social-class and criminological aspect to the Fibromyalgia diagnosis as well. These patients are lower class poor and lesser educated women who are the offspring of the dregs of society- mentally ill, drug and alcohol abusing criminals whose targets are often their own family members via wife beating, child beating, child neglect, child molesting and child rape. These highly dysfunctional families are from socioeconomically depressed areas with higher crime rates. The physically and emotionally 'damaged goods' female fibromyalgia patients further extend their lowly status by staying lesser educated, by working in low wage jobs, and by abusing substances themselves. They remain in socioeconomically depressed and unsafe neighborhoods which increases their risk of further sex crime victimization. And they choose lovers and spouses from the societal low-life pool of girlfriend/wife beaters. Studies conducted in the last few years show that fibromyalgia patients have a significantly increased risk of having a history of sexual, physical, or drug abuse, eating disorders, mood disorders, attention deficit disorder, phobias (unrealistic fears), panic, anxiety, somatization, and a family history of depression and alcoholism. They also show that fibromyalgia patients cope less well with daily problems than others and are more susceptible to psychological stress....Certain studies also suggest that there is more alexithymia, a longstanding personality disorder with generalized and localized complaints in individuals who cannot express their underlying psychological conflicts. As a consequence, some behavioral experts have proposed that fibromyalgia is an affective spectrum disorder in which a primary psychiatric disorder with a possibly inherited abnormality leads to pain amplification and fibromyalgia-related complaints. (pp. 74-75, “Fibromyalgia”, by Janice Brock Wallace) Fibromyalgia and Chronic Fatigue Syndrome: the direct result of physical and sexual assault and abuse Fibromyalgia: Physical or sexual abuse is another type of trauma that may lead to fibromyalgia. Some people were subjected to physical or sexual abuse during their childhood, while others are abused in adulthood. Jeanne calls herself an “incest survivor” because a family member sexually abused her when she was a little girl. Jeanne says that she suffered from extreme stress that stemmed from the abuse, and she later developed fibromyalgia as well. In another case, Sara, who was physically abused by her husband, says that various doctors suspected that her fibromyalgia was triggered by a near-death beating that she suffered, during which she suffered a serious head injury and neck trauma. Some people who were abused as children continue to be abused as adults by their spouses or other individuals. All that physical battering can eventually take its painful toll on the human body, and sometimes the “price” is fibromyalgia.... Being treated and getting counseling for factors such as domestic violence or childhood abuse may be as important in your therapy as any medicinal treatments. (pp. 39-40, “Fibromyalgia for Dummies”, by Roland Staud, Christine A. Adamec) Chronic Fatigue Syndrome: The idea that some CFS patients have a form of post-traumatic stress disorder (PTSD) is an attractive one, since a history of child abuse is fairly common, and so is high life stress prior to onset of illness. (p. 154, “Chronic fatigue syndromes”, by Jay. A. Goldstein) Fibromyalgia and CFS: ...many clinical and physiological clues appear to link fibromyalgia/CFS to a traumatic etiology. The predominance of fibromyalgia and CFS in women (> 75 percent), gender prevalence of physical and sexual abuse in women, and the tendency for women to dissociate with trauma and to develop typical PTSD...place them at greater risk for both conditions. Similar hormonal markers, arousal sensitivity, and symptom complexes of fibromyalgia/CFS and PTSD demand consideration for an etiological relationship between trauma and the fibromyalgia/CFS syndrome. (p. 80, “The body bears the burden”, by Robert C. Scaer) Fibromyalgia and CFS equated with a lifetime of relationship abuse: Women who were raised in addicted, mentally ill, abusive, or pathological families often have the most severe and lingering of medical symptoms and diseases. One reason is that they have an accumulative effect of stress-related disorders because of the length of time they have been 'stressed.' Since many women who were in disordered families go on to pick disordered men, their stress simply rolls over into the next relationship. Or if she is able to avoid the disordered intimate relationship, her previous exposure to the disordered family or resulting stress may go untreated. In those cases, the stress is still stored in the body.
We now know that stress has to go somewhere. It goes into your body as deep as the cellular level as well into your muscles and tissues. This type of stress storage can result in diseases that effect the muscles and tissues like MS, Lupus, Fibromyalgia.
Stress attacks the immune system and renders it ineffective. This can result in diseases like Chronic Fatigue Immune Dysfunction Syndrome, Epstein-Barr Syndrome and other auto-immune disorders like Lupus and Fibromyalgia that end up moving from the immune system to the muscles and tissues... Stress screams to be managed which is why so many women end up with addictions trying to 'manage' the chronic stress condition -- addictions with anxiety medication, pain meds, street drugs, alcohol, food, sex, religion and overachieving....
Over the past 20 years of treating women, I've seen everyone of these disease processes at work in women. PATHOLOGICAL RELATIONSHIPS ARE A LEADING NEGATIVE CAUSE IN WOMEN'S HEALTH ISSUES ON EVERY LEVEL!
If we want to improve women's health in this country, we need to address these pathological relationships that are killing her!
Stress hides because we are adaptive in some ways and become 'use to' the level of stress we are currently under OR have ALWAYS been under since childhood. But that doesn't mean we aren't highly damaging our bodies with it. Some women only become aware of their stress if it jumps markedly. By then, you are in the severe category of stress disorders which by that point, you probably have several of the conditions listed above.
By far, the condition of the 21st century for most people is stress. Women with histories of abuse or current pathological relationships have even higher stress levels than people without these contributing factors. (“Your Medical Conditions—Is the Root Your Relationships” by Sandra L. Brown, CEO of The Institute for Relational Harm Reduction & Public Psychopathy Education http://howtospotadangerousman.blogspot.com/2008/05/your-medical-conditions-is-root-your.html) Theories versus realities: If women and girls, particularly low-income white women and girls, weren't abused by the men in their lives, Fibromyalgia and CFS wouldn't exist, according to this theory. The reality is: Middle income and even a smaller number of upper income patients are being diagnosed with this illness. Men are diagnosed with it too- these are not just women's illnesses. Blacks, Hispanics, Asians and American Indians are diagnosed with these conditions. Police officers, firefighters and EMTs are being diagnosed with FMS and various other autoimmune disorders. Nurses are apparently at a higher risk for developing CFS. Every one of these patients isn't a physical or sexual abuse victim either. Every one of them isn't mentally ill. Nor are they all fragile hot-house flowers who aren't capable of understanding their own feelings, who can't handle the stress related to life's ups and downs. So what is really going on here with all the game playing with pretending these two illnesses are the psychosomatic disorders of poor white women with little education who've been abused their entire lives? Playing Games with the Serious Issue of Child Abuse Child abuse and neglect are not laughing matters. Intentionally setting aside two medical diagnoses, (which are then deemed as psychosomatic in nature) to serve as the diagnostic dumping grounds for low-income white females who are abuse victims does nothing but re-victimize these patients. Labeling all the physical health problems and medical conditions they develop and experience as 'mental illnesses' dehumanizes these patients and strips them of all credibil ity as human beings. What is essentially being said is abuse victims are all emotionally unstable flakes with no real medical problems who 'fake' illnesses because they can't deal with the emotional turmoil of being abuse victims. These are people who are never to be taken seriously. The especially sad part to this is people from life-long socioeconomically deprived backgrounds are often the most at risk for developing various (and multiple) physical chronic medical conditions specifically because their life-long economic deprivation has left them vulnerable to malnutrition issues; to exposure to pollutants and toxic substances in their air, water and soil; to exposure to mold, peeling lead paint and diseases wrought by vermin (rats, roaches, mice, fleas) by living in substandard housing; and poor and inconsistent access to decent quality healthcare- these are all conditions which can cause or greatly contribute to ill health and the development of chronic illnesses and diseases. Under these circumstances, a fibromyalgia and/or CFS diagnosis can be potentially harmful to any patient, from any socioeconomic background, considering these diagnoses come with a lot of 'bad baggage' attached to them- baggage which newly diagnosed patients may be totally unaware. This baggage can destroy the patient's credibility among some care providers. The patient merely becomes a flaky, non-credible, attention-seeking hypochondriac 'head case' whose physical medical problems aren't real, but are actually psychiatric-disorder based. The Fibromyalgia Diagnosis as a 'cause celebre' for preventing child abuse: Stephanie Hall's rather telling and disturbing blog entry: “What do you do when your therapist goes crazy?” serves as a warning which should be heeded regarding game playing within the psychotherapeutic community by using Fibromyalgia patients as pawns over the child abuse issue. Stephanie- a patient with Hashimoto's Thyroiditis and Fibromyalgia- was forced to fire her therapist over the therapist's obsession with Fibromyalgia as a child abuse-caused illness and her dogged determination to make Stephanie conform to that belief. Her former therapist's words to Stephanie during her exit interview say it all: http://sa-hall.livejournal.com/11043.html#cutid1 The Chronic Fatigue Syndrome Diagnosis as a 'cause celebre' for preventing child abuse: It seems as though every time we discover how truly damaging child abuse is to people throughout their lives, we learn even more facts about the effects of abuse and neglect. Emory University School of Medicine, in Atlanta, Georgia conducted a study that draws a direct connection between child abuse and neglect and the onset of Chronic Fatigue Syndrome during adulthood. The study was published in the January 2009 issue of the Archives of General Psychiatry. People diagnosed with Chronic Fatigue Syndrome have a high incidence of experiencing neglect and/or abuse during their childhood. In addition, the subjects in the study with CFS also had suppressed levels of the hormone, Cortisol.... It is known that chronic stress and trauma, as occurs in abusive situations, ramps up the immune system, keeps it activated more than it should be until the system reaches a point where it is no longer able to produce enough cortisol to keep things running smoothly. In this case, the result is Chronic Fatigue Syndrome. This degenerative process can continue into adulthood if stress and abuse continue. In addition, there is nothing to prevent the same process from starting once already into adulthood. In other words, trauma and stress, if they are chronic, has damaging physical effects at any point during life. It is estimated that 2.5% of the adult U.S. population suffers from CFS. It is also estimated that four in every 1000 people have experienced abuse when they were children.
How do we stop this problem? (“Child Abuse and Chronic Fatigue Syndrome” by Allan N. Schwartz, LCSW http://www.mentalhelp.net/poc/view_doc.php?type=weblog&id=591&wlid=5&cn=5)
Posted by juncohyemalis
at 12:41 PM EDT
Updated: Sunday, 5 July 2009 12:46 PM EDT
Saturday, 4 July 2009
Beware The Fibromyalgia Diagnosis Part Fifteen
Topic: Medical Care
The Dangers of Designating Fibromyalgia and Chronic Fatigue Syndrome as “Abuse Illnesses”- Part 1 An Analysis of the “Typical Fibromyalgia Patient” Profile The so-called typical fibromyalgia patient is a middle-aged white woman from a low-income household. She is minimally educated and likely grew up in an unstable and violent household and community, and has carried this instability forward into her adult life through poor personal life choices. She carries “bad thoughts” in her head, and engages in “bad lifestyle” habits which are destroying her body. She chooses the wrong men (men who are physically and/or emotionally abusive towards her) to date and/or marry. Repeated physical abuse and sexual abuse victimization are part of her life experiences, likely throughout both childhood and adulthood. Consequently she cannot handle stress, and cannot fully understand nor deal with her inner emotional turmoil which causes her to develop mental health issues. All these events create a 'perfect storm' which causes both her psyche and body to break down, resulting in “fibromyalgia”. She's diagnosed with fibromyalgia because she's a poor white girl with no education ...A Swedish study also found a relationship between FMS and occupational rank (Hallberg and Carlsson 1998). This study was based on interviews with twenty-two Swedish women with fibromyalgia. Among other things, the researchers found that unsatisfying work- including that which was low status, strenuous, and tedious, and that over which women exercised little control- characterized the occupational settings of women with FMS. With few exceptions, these women had low levels of education, and worked in female-dominated occupational catergories in the “reproductive” sector, including healthcare, childcare, and eldercare services... Overall, there is strong evidence that education is inversely related to FMS symptomology in both clinical and community populations. A large community prevalence study conducted in Wichita, Kansas clearly demonstrates this relationship (Wolfe et al. 1995). For example, this study found that the odds of not completely high school were three and half times higher among those who met the FMS criteria than among those who did not. Clinical studies also reveal the negative association between the prevalence and severity of FMS symptoms and educational attainment, including a reduced likelihood of completing high school and of graduation from college (Goldenberg et al. 1995; Wolfe and Michaud 2004). ...Kevin White et al. (1999) found that patients with FMS were less likely than other patient sufferers to have completed high school and less likely than the general public to have a college degree. Makela and Heliovaara (1991) found a dramatically higher incidence of FMS among those who attended only primary school compared with those who graduated high school...In sum, the negative relationship between FMS and education is found in community and clinical populations both within and outside of the United States. Together, these data on income, occupation, and education, suggest that FMS is associated with less rather than more class privilege....At the same time, however, there is a curious underrepresentation of women from certain social groups that are associated with the very least class privilege, namely, racial and minority women. Startling, for example, is the fact that among low-income African Americans (most of them women) with musculoskeletal pain, only 3 percent met the FMS criteria (Bill-Harvey et al. 1989). ...FMS is not primarily a disorder that affects privileged women, but neither is it found uniformly across all categories of disadvantaged women. Community prevalence studies that are not biased by differences in health care access or utilization consistently find racial and ethnic minorities underrepresented among those who meet the FMS criteria. (pp. 169-170, “The fibromyalgia story”, by Kristin Kay Barker) The bad thoughts spinning around her head Fibromyalgia patients are portrayed as women with self-esteem problems and psychological issues. Their thoughts are filled with underlying rage and anger towards others, combined with self-hatred issues. Consequently their minds are filled with repetitive and racing negative thoughts and emotions which they don't know how to process, work through and resolve. They cannot describe their feelings to others and cannot even describe their feelings to themselves. This “stinkin' thinkin'” is viewed as an important causative factor behind their illness. Fixing this flawed and dysfunctional thinking is seen as a crucial part of their recovery. Before you start any recovery program, follow these eight steps. Get rid of the negative thoughts in your head. Don't be your own worst enemy. If you really believe your fibromyalgia is a fait accompli, the inevitable outcome of the bad luck that has befallen you in this miserable life, it's time to change the direction of your thoughts. Get the negative thoughts out of your head. Negative thinking is not only a wellspring for the symptoms of fibromyalgia but is also the driving force behind many other chronic health conditions. (p. 123) (“Healing Fibromyalgia”, by David H. Trock, Frances Chamberlain)
There are many good reasons why it is helpful for a person who has fibromyalgia and/or chronic myofascial pain to keep a journal... When your thoughts are constantly racing around in your head and the same negative ideas are repeating over and over, like a record stuck in the same groove, you get the most devastating type of negative reinforcement. You become your own worst enemy. You will find that putting your thoughts down on paper will enable you to sort and examine your ideas and feelings. Doing this can help silence the inner negative dialogue that can be so harmful to your self-esteem and sense of self. A journal is a safe place to deal with negative emotions. Think of it as a completely trusted friend. It can be like a drain in an infected wound, allowing the negative emotions of the past to seep away, so that true healing can begin. The pain, rage, or fear that you might be unable to express to another human being can be safely expressed on paper. When you have finished writing, the negative emotions may have lost some of their intensity and some of their ability to make you unhappy may be diminished. You may be able to think more clearly, or to think new thoughts, and you may gain a broader perspective. (pp. 194-195, “Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual, Second Edition”, by Devin Starlynal and Mary Ellen Copeland)
Portrayal of the “Typical Chronic Fatigue Syndrome” Patient Chronic fatigue syndrome patients are also portrayed as abuse victims suffering from psychological problems and mental illnesses. But unlike fibromyalgia sufferers, CFS patients are better off socioeconomically and educationally than their FMS suffering friends. CFS patients are the overly ambitious workaholics whose endless hours on the job cause their bodies to physically break down resulting in a chronic fatigue illness. ...High rates of personality disorders, including histrionic, borderline, obsessive compulsive and avoidant have been diagnosed in CFS patients... ...Two studies using the Minnesota Multiphasic Personality Inventory (MMPI), which assesses personality traits, have reported elevated mean profiles on the hypochondriasis, depression, hysteria and neuroticism subscales...This finding suggests that certain personality traits in CFS patients may not be solely a response to the illness. It may be that these personality traits are risk factors for the development of the illness... Perhaps more relevant to CFS is sufferers' personal portrayals of their premorbid personalities. CFS patients typically report that prior to their illness they were highly active, ambitious people who were constantly on the go, taking more care of others' needs than their own. (p. 64, “Chronic fatigue syndrome”, by Rona Moss-Morris, Keith J. Petrie) The Fibromyalgia and CFS Diagnoses as a modern version of 19th century “female hysteria” Fibromyalgia as a “hysteria” condition is the modern day version of 19th century attitudes towards women as emotionally fragile hysterics, as a result of their inferior female sex. There's a definite Freudian bent to this as fibromyalgia and CFS are supposedly psychosomatic illness related to reactions towards sex and other forms of 'touching' done by men- in this case inappropriate touching and sexual contact via child beating, child molestation, child rape, wife/girlfriend battery, and adult rape- which causes the weak female psyche to break down and develop somatoform illnesses. Another less violently themed tack along the same lines equates the development of fibromyalgia with women's reactions to oppression by a patriarchal society and culture, or as an emotional reaction to being jerked around in romantic relationships. Excerpts from “The Bewitchery of Medusa. Fibromyalgia: Parallelism Between Myth and Illness” by Jorge Alberto Pina Quevedo: ...In our souls exists all that we human beings have experienced over and over again since the very beginning of human existence on Earth, and this wisdom becomes visible through several expressions including dreams, art, myths and in some cases a physical illness. When people are ill, there is for them an opportunity to find out what is going on deep in their souls because, frequently, a physical illness is an expression of a wound in the soul. This may be the case of people with diagnosis of Fibromyalgia....Fibromyalgia is a very old feminine illness or better said, an ancient illness of the feminine. The Bewitchery of Medusa The diagnosis says: "Fibromyalgia is a generalized, diffuse, intense and profound pain all around the body accentuated in the back of the neck and from there extending to the shoulders, for a period of at least three months". But it would not be fair to ignore the many more symptoms which make hard and painful the simplest daily activities. People diagnosed with Fibromyalgia suffer at three levels: physical, cognitive and emotional. Among others, the physical symptoms include fatigue, headaches, colds, inflammations, stomach disorders, rheumatoid conditions, vertebral disc problems, lost of hair and high levels of metals in the blood. At the cognitive level the diagnosed people have to face difficulties to understand and to express ideas, to solve common job and home problems and the lost of recent memory. At the emotional level they experience, frustration, rigidity, depression, and stubbornness. My presentation refers to the parallelism I have found between the Fibromyalgia syndrome and two Greek myths: The first one is the myth of Medusa....the story of Medusa speaks metaphorically about the psychological root of the illness, in particular the first wound inflicted to a woman by an older woman. The second one is the myth of Perseus, which on the one hand is related to complementary aspects of the origin of the illness, specially about the second wound inflicted to a woman by a man, on a daughter by her father... The Myth of Medusa tells the story of an enchanting woman whose most beautiful characteristics were her skin, her voice and her hair, and because of her feminine, sensual and lovely appearance many men and even gods desired to be close to her. One day, Poseidon raped Medusa at the temple of Athena. The goddess got angry and nearly crazy but took no revenge on Poseidon the god for the offense. Instead, she discharged her anger upon the human, upon Medusa herself, by turning her white skin into a green and scaly one, her voice into a thunder and her beautiful hair into a bunch of whistle snakes. Besides, Medusa was granted with the power of turning into stone any living creature daring to look at her face directly. How does the myth relates to women with Fibromyalgia? Let’s think for a moment about Athena and Medusa, two very important archetypal images to be found at the inner world of a woman. Athena is the virginal aspect of the feminine dedicated to protect and promote the masculine activities and patriarchal values. She symbolizes the psychic creation and reflection; the social intelligence. Medusa, is the aspect of the feminine dedicated to sensuality and relationship. Both aspects live consciously related in the myth as well as within the girl’s psyche until the rape from a masculine force. At that moment and to preserve nothing but life the Self of the woman makes a split in her soul. Since that moment, what was joined before is now divided. The split in the soul of a woman with Fibromyalgia is experienced at the ego level in specific ways, for example: She longs for a love relationship and she dates with a man. Inside her heart there is a memory about the time when she was an undivided woman. Her own Medusa with her sensual gifts is activated and begins to play the seduction game. After a time and when the man is falling in love due to the enchant of that sensual and lovely woman, deep from her unconscious, the rape comes again and Athena appears to play her roll in the opus. The ego of the woman is possessed by Athena and the diagnosed woman shows the man that she is more adapted to the masculine and the external world than he is, and you know that many men are afraid when they are exposed to the presence of a woman who works and thinks better than them. So the man begins to look around and wonder: Where is she? Where is the sensual and lovely woman gone? I can not see her anymore! Why is she hiding? The woman notes the man’s hesitation and looks for a reason but she can not find an answer because she is not aware that the curse of Athena is active again and what the man feels now terrifies him. He is about to look directly the face of Medusa and if he remains close to the woman sooner or later he will be petrified. At the outside world, the woman is hurt because the man goes away and once again she experience, just like Medusa, the punishment of living in isolation and misunderstanding. Then comes fear, loneliness, sadness, and finally rage because the woman, just like Medusa, is paying for a crime she did not commit. Following one of the most important ideas of Dr. Jung, as to say that “inside is like outside”, it is appropriate to look at the myth as an event within the soul of the woman and, from that point of view, we shall see that certain positive aspects of her inner masculine energies go away because, on the one hand, Athena, as the goddess she is, has the power and the capability to perform the activities that should be done by the inner man. On the other hand, Medusa, as the human she is, does not have the power to continue performing her original nature because since the curse took place, her sensual skills were erased from the surface and remain invisible. So, as a consequence of the presence of Athena and the curse of Medusa, the inner man of the woman faces emptiness because there is nothing to be related to.... I began my investigation with two questions in mind: Is it possible for people with some specific attitudes to suffer from a physical illness? Is that the case of women with Fibromyalgia?... Exploring the myth, I found that there are many images of Athena and Medusa which give us a message about the lack of expression of their inner world. On the one hand, it seams to me that was not allowed for Athena to speak about her pain and she only shows it symbolically by wearing a medallion engraved with the face of Medusa to protect her heart. Athena had to be what the patriarchal energies forced her to be. So are women with Fibromyalgia... Here you have a living image of the world as experienced by the diagnosed women. In first place, nobody understands what they try to say. Next comes the brutal expression of rage. The thunder that comes out of their mouths frightens and prevents anyone from coming closer, touch the wound and make conscious the pain. The guard of the prison is at work. The Bewitchery of Medusa. When it all began? Well, about thirty thousand years ago the human beings recognized the existence of an image within their psyche, an image whose characteristics belong to an all-powerful woman. It is without discussion that the first deity that governed the destiny of humanity was a feminine figure linked in a direct and close way to the basic facts and elements which make possible and support life. After twenty seven thousand years, began the arousal of patriarchal culture. For three thousand years, the feminine was devaluated and repressed. The wound took place, the damage was done and is present today as Fibromyalgia.... ....People suffering from Fibromyalgia have many times forced their needs and desires to wait until the necessities and desires of other people, regarded as important, are taken care of. In order to do so, they had to lose contact with their own feelings, and with their physical and psychological temples, their own bodies. A headache is the price to pay for an excessive rationality. ...As a general rule, people with Fybromialgia avoid conflicts and if there is no choice they solve them as quickly as they can ¡to get out of there! Inflammation is the metaphorical expression of what happen when a feeling is coming and people does not know what it is or what to do with it so anxiety shows up. Then repression takes place and remains in charge until the anxiety slows down. Inflammation speaks through the body what can not be expressed by words... ...The stomach works day and night restless until after a long time its enormous capacity diminish and digestive disorders, common among people with Fibromyalgia, appear. People with Fibromyalgia have problems to express their feelings and sometimes they do not even know what they are feeling, just like Athena and Medusa. ...When people with Fibromyalgia can not move or they move with pain, it seems that their bodies are trying to make them conscious about the fact that there is not possibility to keep moving anymore. Most of people with Fibromyalgia have been working very hard for many years. Of course, painful and difficult movement is terribly unpleasant and frustrating for these people, along with the fact of not being able to carry out all of the usual activities. Rheumatoid conditions are the equalyzers. When people with Fibromyalgia have to face the fact that they can not do what they used to they become frustrated, just like Medusa can be. Anger begins to emerge and then repression appears, which demands a great deal of energy and impedes anger to arise. This is one of the roots of tiredness and fatigue.... ...The cervical discs are located at the cranial base and the first one, located at the skull’s basis is named Atlas, a well know titan’s name linked with carrying the world upon his shoulders. Curiously, people with Fibromyalgia do the same because they take great amounts of responsibilities, their own and others. Many times they are in charge for their fathers, mothers, brothers, sisters, employers, friends, etc. Medusa, symbolically, is carrying upon her neck and shoulders the weight of the wounded and repressed feminine and the devaluating masculine energies, just like people with Fibromyalgia. ...To breath is difficult, the nose is blocked, the throat is irritated, the voice does not come out easily and sneezing is like a warning for the people to stay away from us, to swallow is very hard too, by so the communication is nearly impossible. Athena does not permit a man to come close to her, she is a virgin goddess. Medusa wants a man to come close to her, but if he dares she turns him into stone. ...Usually people with Fibromyalgia carry a lot of anger and guilt. Besides, they live worried because they think that they have to pay for their real or unreal sins. Their superego is huge and powerful and they try to compensate by caring for others and reaching perfection. In most families of people with Fibromyalgia expression of anger was avoided and what should be an environment of confidence and knowledge to face life is a prison instead. Both, Athena and Medusa live at their own prison. The former at her head the later at her body.... My conclusion is that whenever a human being has to unwillingly abandon an aspect of the feminine nature within, is about to suffer: The Bewitchery of Medusa. You can argue that this is the experience of many women and not all of them develop Fibromyalgia, and you are right. The difference is that, as you know now, it is necessary a second betrayal from the relationship between the feminine and the masculine.. The liberation will come when the positive masculine energies that for a long time remained undeveloped within the woman's psyche grow enough to stop flying, descend to Earth and be able to recognize and to honour what has been disregarded for years.... I presented this paper at the First International Academic Conference sponsored by IAAP and the Department of Psychoanalytic Studies of the University of Essex in Colchester, England in July of 2002. http://www.cgjungpage.org/index.php?option=com_content&task=view&id=711&Itemid=40
Posted by juncohyemalis
at 2:42 AM EDT
Friday, 3 July 2009
Beware the Fibromyalgia Diagnosis Part Fourteen
Topic: Medical Care
Don't Question, Just Accept Fibromyalgia and CFS Patients are endlessly portrayed as emotionally broken people who need to be psychologically fixed, whose illnesses are simply the physical manifestation of their emotional dysfunctions. Good luck at finding the rare arcticles, studies, and books which don't portray these patients in a negative light to some extent or another. Fibromyalgia and CFS online and print literature often contains Cogntive Behavioral Therapy-style advice and is rife with psychotherapy lingo, with a heavy emphasis on coping and acceptance. Both are used in relation to Fibromyalgia and CFS versions of "The Five Stages of Grief", and in terms of helping all these emotionally dysfunctional Fibromyalgia and CFS patients fix their defective personalities which supposedly either caused their illnesses or greatly contributes to their symptoms and the severity of their conditions. Many of these acceptance and coping-skills related articles and book excerpts use similar, or even the exact same words and phrasings, all to relate the same message- If you have been diagnosed with Fibromyalgia and/or CFS it's because you're emotionally damaged goods and need emotion-based fixing in order to heal. "Heal" being a term used mostly in a psychological sense, as the symptoms of these illnesses are supposedly caused by traumatic "body memories" which bring physical pain to their "victims". Unlike other physical illness and medical condition treatment protocols, Fibromyalgia and CFS treatment protocols, beyond the insomnia and chronic pain treatments, are often largely based upon dealing with feelings and emotions. It's all about stress, fear, anger, feelings of wrongness or badness, poor self-worth, feelings of inadequacy, feeling maligned by others, being out of touch with oneself and one's thoughts, feelings and needs, having boundary issues, lacking trust, needing validation from the wrong people, and other touchy-feely stuff which needs to be treated with Cognitive Behavioral Therapy, postive affirmations, support groups, various other self-help methods like self-hypnosis and guided imagery, and standing up to the bossy people in one's life. Unfortunately, this somewhat resembles the Stuart Smalley skits from Al Franken's stint on Saturday Night Live, with Stuart's trademark affirmation: "I'm Good Enough, I'm Smart Enough, and Doggone It, People Like Me!” http://en.wikipedia.org/wiki/Stuart_Smalley You Spin Me Round Like A (Broken) Record Baby... From "Fibromyalgia Lesson 3: Coping: the psychological aspects” at Suite101.com: Learning Acceptance Accepting fibromyalgia is similar to coping with the death of a loved one. It starts with denial. As happy as we were to get a diagnosis at last, we start thinking that maybe it's wrong. This can't be the way it's going to be from now on! We all go through it – although not everyones experience is identical.... We need to move to the final stage - acceptance. Accept our limitations and see what we CAN do despite them... Raise your self-esteem. Fibro victims tend to be over-achievers. We have had unrealistic expectations of ourselves all of our lives. It's time to get real. Set some new goals. They don't need to be large- just realistic. http://www.suite101.com/lesson.cfm/16603/16/2 From: "Acceptance for Living With Fibromylagia":
How Acceptance Can Help With Managing Your Illness A chronic illness like fibromyalgia (FM) changes your life. It can be hard to accept those changes, especially when it means giving up things you care about. When you're adapting your life to chronic illness, it's normal to go through a grieving process, just as if someone close to you had died. The final phase of the grief cycle is acceptance. Some people confuse "acceptance" with "giving up," but acceptance actually is a means of looking at your situation realistically so you can set reachable goals. http://chronicfatigue.about.com/od/copingwithfmscfs/a/acceptance.htm From BellaOnline's Fibromyalgia and CFS Newsletter Archive: The word "grief" is usually used in connection to losing a loved one in death. However, grief can occur as the result of other unfortunate events such as the end of a relationship, the loss of a pet, loss of hopes, dreams, and plans for the future. To persons living with fibromyalgia and chronic fatigue syndrome, loss is a way of life. It's more than accepting the diagnosis and the loss that we experience initially, but the losses that follow throughout our lifetime. We may find ourselves grieving repeatedly.
Although responses to loss are as diverse as the people experiencing it, certain stages are common. Dr. Elizabeth Kubler-Ross identified and named the Five Stages of Grief. Knowing these five stages can sometimes help through the grieving process, and we can see the light at the end of the tunnel. Most people may experience all five stages, but they may not experience them with the same duration, in the same order, or with the same intensity.... Acceptance
The final stage is acceptance. You have to accept the loss, not just try to bear it quietly. We come to the realization that our former self is gone, and that it's not our fault that we got sick, and that we didn't do this to ourselves. Seeking the good that can come out of the pain of loss will lead to finding comfort and healing.
We may have gone through all of the above stages and in many cases once before getting to acceptance. We may even experience these stages after every loss that we have while living with fibromyalgia and/or chronic fatigue syndrome. Even when we reach the acceptance stage, it does not mean that we no longer get sad about our losses from time to time, but the sadness no longer overshadows us and does not keep us from functioning normally most of the time. Over time, the intensity of the sadness generally diminishes, and we learn how to cope. http://www.bellaonline.com/newsletter/fibcfs From the “Fibromyalgia: After the Diagnosis...” article: You've just heard the words,"You have fibromyalgia." How do you feel? Some of you are elated. After years of pain and uncertainty and visits to multiple doctors, often wondering if "they" were right and maybe you really do have serious psychological problems, you finally have confirmation that you have an actual illness. There is a real name for your suffering. Others of you are stunned and frightened. You've just been told you have a disease for which there is no cure. You feel like some of your worst fears are coming true. With dozens of unanswered questions churning through your mind, you wonder what--if anything--the future holds for you. Both reactions are perfectly normal. Regardless of your initial reaction, the question remains...what next? What comes after the diagnosis? Once you have been diagnosed, you will begin a journey that will lead you through five stages. These stages are very similar to the five stages of grieving and death identified by Dr. Elisabeth Kubler-Ross. Although fibromyalgia (FM) does not cause loss of life, it does bring about a loss of our former lifestyle. It is both normal and necessary for you to grieve any significant loss.... STAGE 5- Acceptance/Re-Evaluation
Acceptance is not resignation. It is understanding -- understanding that your life will be different, but that different can be better; understanding that you can accept your pain without becoming your pain; understanding that your life can still have a positive and productive purpose. At this stage, it is time to re-evaluate your life and your lifestyle. http://www.fmaware.org/site/News2?page=NewsArticle&id=6313 From the article, “How I Created a Good Life with Fibromyalgia”: During the early years, I went through a kind of death, the loss of the person I was before FMS. I began with denial.... ...To deal with the anger, despair and depression I was experiencing, I started therapy, which helped me come to terms with all the negative emotions I was having along with my FMS... By 1998 I had attained what I call conditional acceptance. It took me seven years to reach this stage. I found a good balance of activity, rest, exercise. I learned stress avoidance and stress reduction techniques. I evaluated my life in all areas and chose exercise, activities, relationships, and stress reduction techniques that supported my feeling as well as possible. Based on my experience of having symptom reduction, rather than symptom erasure, I decided to focus on a coping strategy. .. Reframing My Thoughts It became very clear that a positive attitude was crucial if I was going to attain acceptance and peace with my illness and my life. I finally learned that how I perceive myself and my chronic illness can greatly affect my quality of life. One way was by reframing my thoughts. Reframing is a term used in psychology to mean learning to look at something from a new perspective. Taking a situation, and looking at it in a different way, can help one accept and embrace that situation and give it a positive spin. I taught myself this skill. For example, I took the idea "I am so tired today. I don't think I will ever feel energetic again" and reframed it as "I am tired today. But from my past experience with fatigue, I know that I will feel good again, after giving my body the rest it needs." The thought, "My pain is awful and it's never going to get better" became "Yes, the pain is strong today, but the last time it was this bad, it did get better."... Benefits of Acceptance I have learned that there are many benefits of acceptance of my FMS. I take better care of myself. My health is a top priority. When I feel better, everything in my life works better. My life becomes more predictable, less of a roller coaster ride. With proper exercise, rest, and activity pacing, I am giving my body the gift of healing. My body relaxes when I'm not fighting with it, and I feel better. I also have more confidence in myself and in dealing with people. By accepting my illness, I feel less of a need to explain, rationalize, and fret over what others think. http://www.cfidsselfhelp.org/library/how-i-created-a-good-life-with-fibromyalgia From: “The Mystery of Fibromyalgia and How Cognitive-Behavioral Therapy Can Help”: Cognitive-behavioral therapy can assist the fibromyalgia patient to identify stressful triggers that exacerbate pain. This may involve examining family struggles, exploring inner-conflict, and working with core, self-defeating assumptions that affect thinking and behavior. Teaching the patient mindfulness meditation as a way of relaxing the sympathetic nervous system is beneficial... ...There is a tendency for fibromyalgia patients to distort reality by focusing on negative perceptions to the exclusion of the positive. Helping the patient and family to accept physical limitations is a necessary component to successful treatment.
Fibromyalgia patients can easily get enmeshed in a cycle of pain and associated emotional symptoms. It is the goal of cognitive-behavioral therapy to assist the patient in coming to terms with his disorder and making plans to manage it. This is accomplished through acceptance and teaching the patient positive ways of thinking about his condition and multiple ways of treating it. http://leavingthebubble.blogspot.com/2009/01/mystery-of-fibromyalgia-and-how.html Daily Strength's Fibromyalgia forum- thread “acceptance, do we ever truly accept?” webpage: http://www.dailystrength.org/c/Fibromyalgia/forum/3422237-acceptance-do-we-ever-truly From the Fibromyalgia Facts and Symptoms- “Coping With Fibromyalgia” webpage: When faced with a chronic condition especially one that involves a lot of pain it is inevitable that your emotions will run amok. Taking control of your emotional life involves learning emotional coping techniques. You will more than likely go through the stages of grief when faced with a condition such as fibromyalgia. You will grieve the relatively carefree life of "before the diagnosis". You may feel anger, despair, and even depression over the prospect of what your life will be like now that you have the diagnosis of fibromyalgia. The stages are just like those one goes through dealing with death. You will go through a refusal or denial of the condition, anger or feeling like it is unfair that you have been dealt these cards, and then you will decide that bargaining or promising that you will be a better human being if only the condition will go away only to discover that the condition is here to stay and then the depression sets in and you may decide to just give up, and eventually you will come to the place called acceptance. Once you have navigated your way through the stages you will reach a place where you can start to come to terms with your diagnosis. Seeking the help of a professional counselor may help you to deal with the stages and face your emotions. Sometimes medications can help to ease the discomfort and pain, as well as the depression that may encompass you. Support groups are wonderful tools for being able to cope with your emotions. http://chronicfibromyalgiatreatmenttips.com/coping-with-fibromyalgia.php “Fibromyalgia Attitude Adjustments” tips, from the Fibromyalgia Life Tips website: http://fibromyalgia.lifetips.com/cat/58409/fibromyalgia-attitude-adjustments/ “Accepting Fibromyalgia and Moving Past It: Patients Share Their Coping Strategies” webpage from Health.com: http://www.health.com/health/condition-article/0,,20188802,00.html Selected quotes from the book “Fibromyalgia & Chronic Fatigue Syndrome: 7 Proven Steps to Less Pain & More Energy” by Fred Friedberg Ph.D, a practicing clinical psychologist and CFS patient, who uses Cognitive Behavioral Therapy techniques to treat the symptoms associated with Fibromyalgia and Chronic Fatigue Syndrome: When you do actually assert yourself, give yourself both the right to your feelings and the right to personal time. You may experience mixed feelings during these assertive exercises- possibly at every step of the way- because this level of forwardness may seem to conflict with the person that you wish to be. But remember, that person, who strives to be all things to all people, is also an overstressed, overburdened, and- at the core- unhappy person. (p. 98) People suffering from CFS or FM may experience a variety of jarring negative emotions-including anger, grief, discouragement, worry and guilt. Coping with the emotions...can not only help improve your day-to-day well-being, it can also aid your overall improvement-particularly when these coping skills are well-learned. And without the burden of these negative emotions, you'll have a greater chance to enjoy positive feelings. (p. 101) You probably experienced large doses of guilt even before you became ill. If you hold yourself to perfectionistic high standards- standards that rarely can be reached- the guilt of not doing enough may be a persistent theme in your emotional life. And if your sense of self-worth comes from helping family, friends, and others, not helping- or not being able to help- can produce intense feelings of guilt. (p. 106) ...Any bad relationship that is a major part of your life- whether it be with a spouse, significant other, sibling, or parent- can be detrimental to your healing. Dysfunctional relationships create an array of negative emotions, including anger, hurt, anxiety, guilt, and depression. These emotions will stress your fragile physical being and worsen your symptoms (p. 116) Excerpts from the November 2004 article “A holistic approach that turned up trumps” by Patricia Redlich, which appeared in the Irish newspaper- the Independent: MICHAEL Kelly is an old-fashioned clinician. The way doctors used to be. He reads his patients... When he talks about the mind in the matter of fibromyalgia, then, he is not holding up an accusing finger, but merely dealing in the obvious. The mind and body are one, in sickness and in health, and healing. So why should it be surprising that the cause of the condition should lie in the head or heart or personality, rather than in the muscles, or connective tissue, where the often excruciating pain of fibromyalgia resides? ...Michael Kelly has a deep respect for the human spirit. He knows it doesn't confine itself to mere emotional expressions of distress. The body can suffer too, quite terribly, when the heart is disturbed... ...Theirs is a disorder, and Michael believes its origins lie in a spiritual deficit - my words, not his, for he fears it sounds too metaphysical. He talks instead of a driven personality, different from male workaholics, to do with women who effectively prostrate themselves in the service of their chosen task. Dr Kelly describes women "cocooned in a state of constant misery" and believes the misery was always with them, and only manifest now that they can no longer put in the relentless effort. He's trying not to sound like a pop psychologist, he explains, and goes on: "These are women who don't seem to have any real sense of self. Their chosen path of attempted perfection, be it career or domestic goddess, is their only persona. They feel good only from doing good, never from just being. And you can feel their agitation, an internal distress which drove them always, and now threatens to annihilate them." I tell him it's the brownie-point syndrome, the endless hope that if we earn enough, by trying hard enough, we'll be liked, loved, appreciated, accepted, allowed exist, breathe even. Which is why he is right that this isn't just workaholic behaviour, even though these young women are high career achievers. Workaholics settle for career success, job acknowledgment, status. The women are seeking the right to be alive, are driven by the terror of personal disintegration if they can no longer perform. Many of us have been that soldier. We know. “...There's no external solution, it's an inside job. My patients have to undergo psychological change, in terms of their attitudes to themselves and to others," Michael continues. All he can do by way of helping is tell them the truth. Which is why he's brought out a second edition of his book Fibromyalgia, Fatigue and You. In it, amongst other things, he's attempted to spell out some paths to that much-needed personality change. I don't argue with him about that, but ask instead how a driven personality can end up with terrible physical pain. The exhaustion I can understand. Alcohol addiction I could expect. But how does the pain come about? Dr Kelly has an explanation. "Women who end up with fibromyalgia operate on the basis of unrelenting internal distress, chronic worry, all-pervasive anxiety, and suffer as a result from lack of restorative sleep, that sleep phase most necessary for refreshing the body, and mind. They're exhausted, but keep going, pushing themselves, and create a vicious circle as sleep further deteriorates. Their pain threshold then sinks, and sensory messages from the muscles travelling back to the brain register as pain. Lack of physical fitness, specifically aerobic fitness, adds to the problem, presumably because more muscles become involved in sending pain signals, sleep worsens, the brain doesn't get to produce the happy hormones, or endorphins, it creates during exercise, and the body becomes even more sensitised." Is there hope, I ask? "My patients feel like freaks. That's so sad, because the suffering in fibromyalgia is so real. It helps a lot for them to hear the story, to see it written down. They feel better, and heartened about taking some tentative steps towards change. "And it's great to see the metamorphosis, to witness a woman blooming, as she leaves fear behind." http://www.independent.ie/national-news/a-holistic-approach-that-turned-up-trumps-486456.html From the Psychology Today article “Is It All in My Head? With diseases like chronic fatigue syndrome and fibromyalgia, what you believe about your illness influences how sick you become.” by Melissa Schorr: Wayne Katon, whose research focuses on depression, anxiety and somatoform disorders, makes the case that stress and anxiety play a primary role. In his view, personality doesn't just create a hospitable environment—it's an integral part of the diseases. He believes that the initial injury or illness is almost irrelevant. What really matters is the interpretation and emotional reaction. Patients develop what he calls "catastrophic cognitions": beliefs that if they start to get back to their activity, they will damage themselves further. According to Katon's clinical observations, patients with chronic fatigue or fibromyalgia tend to be highly driven overachievers unaccustomed to feeling any loss of control. When injured or sickened, those who decide that the pain or illness has overwhelmingly and permanently damaged their bodies come to feel victimized and unable to cope. Learned helplessness sets in, and patients can find themselves perpetually depressed and inactive. "They have trouble getting back to that old lifestyle, and what sets in is depression, " Katon suggests. "In our modern society, for proplr who have driven themselves, fatigue becomes a palatable way out of a difficult existence."... Fear of further damage and disability may keep patients from trying to get back to an active life. "Whatever caused this impairment is probably not what's keeping it going," Katon says. "What's keeping it going to a large extent are the misbeliefs about getting back to an active lifestyle." http://www.psychologytoday.com/articles/index.php?term=20050503-000002&page=1 From the “Fibromyalgia in Children” webpage: Therapy can also help the fibromyalgic child cope with tension and/or stress in more healthy ways. Many children with this condition don’t know how to manage their stress and are often high-achievers who try to do too much. They are also hard on themselves and may be prone to other self-esteem related problems too. Some studies have shown that therapy, specifically of the cognitive-behavioral type, can help improve fibromyalgia symptoms in some children. Therapy can also help to alleviate the anxiety and depression symptoms which often accompany this disease.... What Causes Fibromyalgia? Fibromyalgia syndrome (FMS) is generally an elusive disease. I know from personal experience that not many people seem to understand much about it. I include many medical professionals in that group. There are several theories on the causes of FMS. First, there seems to be a prevailing belief that a trauma such as a car accident triggers the disease. Other traumatic events that may lead one to develop this disease include sexual or physical abuse and alcoholism.... http://health.learninginfo.org/fibromyalgia-children.htm Quotes from the book, Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Chapter 12: "Using Your Illness as a Teacher")” by William Collinge, Ph.D.: People with Chronic Fatigue Syndrome (CFS) often find that the syndrome directly challenges all that their lives have stood for. Many have found that to make it through this existential crisis, they have had to find a way to fit this illness into the overall fabric of a meaningful life...
Psychologists have long been interested in what they call the secondary gains, or benefits, of illness. There are two ways in which illness can be beneficial. One is when it serves to rescue or remove us from unacceptable or unwanted circumstances. The other is when it brings us unexpected insights or discoveries which enrich our lives and advance our growth.... It is certainly worthwhile to examine whether the illness is bringing relief from some otherwise unacceptable circumstance. If this is the case, then you may not be pursuing your recovery program with full commitment.
Our focus here, however, is on the other kind of benefit-one which, for many patients, has been totally unexpected yet greatly appreciated. CFS has served as a teacher and an opportunity for personal growth. As you have no doubt found, this disease can force you to re-evaluate your values, purposes, and whole way of life. Various people have described this illness as a wake-up call or a two-by-four over the head. Perhaps a more sophisticated term is to call it a "pattern-interrupt." This is a term used by hypnotherapists to describe something that interrupts or changes old, unconscious patterns of living or acting, and makes room for something new and better to happen.... CFS forces you to change your relationship with yourself. One of the most common discoveries is that we can actually pay attention and listen to ourselves much more deeply than ever before. Some experience this as listening to inner guidance. Others describe it as listening to the body, as trusting yourself, or as accepting yourself. Consider Tina's story:
"Getting sick was the best thing that ever happened to me. It was what it took for me to really. . . make major changes. I don't think I would have done it otherwise. My body just had to stop me. I wasn't paying enough attention to my life, my stress, my job, and my unhappiness to do anything about it, until I got so sick that I literally could not do anything and had to stop. After that, everything changed...
A similar experience is reported by Christy, who states: "I am actually grateful that I got sick, for what I have learned has been that valuable to me. It taught me to slow down and listen to myself. It also taught me that I will never work for money again, only for something I like to do. Money will come, but my job will never run my life again. I will do things that bring me joy."...
Another aspect of this transformation is the obvious shift in attitudes toward self-care. A high degree of vigilance needs to be developed which involves paying attention to your needs on a moment-to-moment basis. Maintaining your sense of balance or integrity becomes a real priority in daily living...
Tremendous strides in self-acceptance are very common for people who have been through CFS. The syndrome forces people to acknowledge and accept their vulnerability and their limitations. In the process of doing so, there very often is an overall shift toward greater self-acceptance....
Self-acceptance also involves acceptance of aspects of your self that were previously denied or discounted, such as your wants and needs. Debbie had previously taken an attitude of self-denial, self-sacrifice, always putting others' wants and needs before hers. This would happen not only in family life but with friends as well. Her belief now is that "My wants and needs are valid, and I say what they are. I may not always get it right now, but I no longer wait for someone else to give me permission or encouragement to have what I want or need."...
One of the ways that we add to our suffering is in our nonacceptance of what is true now. Our denial of the truth of our circumstances postpones our acceptance of, and our working with, the present. Energy is consumed by our struggle to hold on to the past, which is impossible and prevents us from living fully now.
One consequence of this for many people with CFS is depression. I refer here to the depression that can arise as a result of our appraisal of our circumstances, not as a result of the chemical changes from the disease process. The antidote to this kind of depression is acceptance of what is true now, and letting go of our fixed ideas from the past about how things should be.
http://www.prohealth.com/library/showarticle.cfm?id=4187&t=CFIDS_FM Quotes From: The Psychological impact of Fibromyalgia and Chronic Fatigue Syndrome: Coping strategies" an article by Dr. Mark J. Shaw, the author of “Beat Fibromyalgia and Chronic Fatigue Syndrome”. Dr. Shaw portrays the emotional aspects of a Fibromyalgia and CFS diagnosis as rather bleak- a life of social isolation, filled with fear, anger and resentment, with ostracism and rejection by loved ones, and a complete lack of understanding by those who don't suffer from these conditions: I will say from the outset that I believe this is one of the worst afflictions that can strike any person, at any age and at anytime.... ...At a time when you need the most support in your life, often, people are turning their backs and walking away or muttering under their breath. It is a frightful condition. There is no point disguising the reality which is, I'm afraid to say, that you will lose a lot of friends and colleagues along the way to the monster that is Fibromyalgia and CFS.
It is NOT possible to explain this condition to people who have no experience of it either by having suffered, or through having a particular medical interest in the area. They WILL NOT understand what, or to what extent, you are suffering. Again, I'm afraid this is the norm. Accept it as such and you will not then be personally offended by acts of prejudice.... If you had no knowledge about Fibromyalgia and CFS what would your reaction be to someone else developing these symptoms?............ You see? Its human nature, it's cruel isn't it?... Concentrate on yourself and try not to dwell morbidly over the people that you have lost already. Those that do not stand by you, and there will be some, are what we term fair-weather friends... Fibromyalgia and CFS will create emotional havoc for you and for your loved ones. This is normal.
Becoming chronically ill is very much like a bereavement. The losses and emotions involved are very similar. Giving up works means not only that you lose income but you also lose status, friendship and a purposeful role in life.... Fibromyalgia and Chronic Fatigue Syndrome can create a fear of rejection by others even when there is no evidence of this happening. I mean, who wants to be around someone who is like this, we say to ourselves.
....our self esteem is based on what others think of us, and usually that is based on what we "do" or "how we play" , or "what we say", generally how we interact with other people. As we take to "doing less", "playing" less and generally interacting "saying" less, then our self esteem plummets along with our health.
We are worried about the future; the dark shadow of uncertainty is round every corner.... I do advocate counseling and support groups. You will need to find someone who has specific knowledge about the emotional effects of Fibromyalgia and Chronic Fatigue, again a good doctor should be able to put you on the right path, there are also Fibromyalgia and CFS support groups based in most cities and towns across the US.
Once you have found a good support group you will also find good counseling. http://www.submityourarticle.com/articles/Mark-Shaw-1444/fibromyalgia-9108.php Anyone who is diagnosed with a life-altering medical condition is naturally going to experience periods of adjustment which can come in many forms. Of course educating friends, family and colleagues may be a necessary aspect of this adjustment for any illness which is new to the members that patient's familial, social and career circles. The concept of fair weather friends and others who are too self-absorbed and can't be bothered caring about other people when they're experiencing hardships in their lives is nothing new either. Everyone in their course of their lives has to deal with such individuals whether they are family members, friends, acquaintances, co-workers, classmates, or neighbors. Dr. Shaw's hyperbole filled piece could unnecessarily frighten newly diagnosed patients into believing they're about to be abandoned by just about everyone in their lives, and that none of their family, friends, and colleagues will be capable of understanding them. Considering Fibromyalgia and CFS have symptoms in common with various illnesses, including Lupus, Multiple Sclerosis, Lyme Disease, Vitamin and Mineral Deficiencies, and AIDS, it's bizarre that Fibromyalgia and CFS are painted as completely “unique” illnesses symptom-wise and are supposedly not understandable to everyone who doesn't have either or both of these conditions.
Posted by juncohyemalis
at 3:00 PM EDT
Updated: Saturday, 4 July 2009 3:06 AM EDT
Thursday, 2 July 2009
Time to shake things up a bit
Tripod Blogs is being a bit glitchy at the moment while they transition us from one form of software to another, so I've been forced to re-enter several entries beginning with "Beware the Fibromyalgia Diagnosis Part Fourteen" which of course alters their posting dates- changing them from June to July. Sorry for any confusion this may cause. Otherwise... My research into the 'great imitator' illnesses has reached the point where it makes sense to start posting blog entries discussing the other great imitators alongside the “Beware the Fibromyalgia Diagnosis” entires, as I've reached the part of the “Beware...” series where information regarding the what's and whys behind Fibromyalgia and Chronic Fatigue Syndrome will begin to overlap with information related to the other great imitators, as I begin to delve more into the the hard science-the biologic, environmental and genetic questions and answers (where there are answers), although I'm still not finished with the social science aspects. This series has actually spawned a major research and writing project as well which I am still in the process of finishing up- to be published in some form at a currently unknown time. In addition, I'm simply getting myself into a sort of rut by only focusing on posting about Fibromyalgia/CFS-ME and am ignoring other topics related to chronic illness/disability, healthcare, related public policy issues and the like.
Posted by juncohyemalis
at 3:01 PM EDT
Updated: Saturday, 4 July 2009 3:23 AM EDT
Monday, 4 May 2009
Beware the Fibromyalgia Diagnosis Part Thirteen
Topic: Medical Care
How Abuse Trauma and Personality Type Theories Play Out in the Fibromyalgia and CFS Online Support Groups and Message Boards Considering fibromyalgia patients are very strongly encouraged by the medical and psychosocial support communities to join fibromyalgia support groups and forums and to network, bond with and commiserate with fellow fibromyalgics, where does peer pressure and peer acceptance fit into the equation? From “Treating Fibromyalgia” by Paul J. Millea, M.D., M.S., and Richard L. Holloway, PH.D; from American Family Physician: Support Groups and Online Chat Rooms. Many patients benefit from discussing their day-to-day lives with others who are also affected by fibromyalgia. Support groups may be located through a local chapter of the Arthritis Foundation (AF). The AF address is 1330 W. Peachtree St., Atlanta, GA 30309. Information on local chapters can be found on the AF Web site at http://www.arthritis.org. http://www.aafp.org/afp/20001001/1575.html From the “Fibromyalgia Resource Information” website answering the question of why Fibromyalgia patients may need therapy: Fibromyalgia patients may need added emotional support and help with coming to terms with living with the chronic pain and physical and mental limitations associated with this disease. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family. Becoming actively involved in a support group can help those with fibromyalgia ease feelings of isolation and low self-esteem. http://www.fibrofactpage.com/questionsii16.html
The link between Fibromyalgia/CFS and Post Traumatic Stress Disorder through emotional trauma from domestic violence victimization, or by supposedly 'freaking out' from being in a car accident, only garners a mention in just some of the Fibromyalgia/CFS books which are written for patients and their families. The concept of Fibromyalgia and CFS being somatoform/biopsychosocial illnesses caused by parents and other family caregivers neglecting, beating and/or molesting their children, which leads to fibromyalgia in adulthood for these child abuse victims, is much more commonly found and is discussed in far greater detail within the written literature which is geared towards physicians, psychologists, social workers, and others in the medical and social services support fields; although these subjects occasionally become minor news in the media for a very short time the findings from a new psychosocial new research study are released. But the somatoform theories of Fibromyalgia being caused by the emotional aspects of domestic abuse and/or accident trauma have definitely made it to the internet-based formal and informal Fibromyalgia support and advocacy groups and organizations, as well as to various patient online support groups, forums, message boards, and illness/awareness blogs for dissemination to the patient community as a whole. Discussions of studies linking fibromyalgia to certain mental illnesses appear in these forums, on occasion. Oddly enough, some Fibromyalgia patients from the cyber-based fibromyalgia advocacy websites and online patient support groups and blogging community seem to readily embrace the abuse-trauma connection without question, and these fibromyalgia patients also very willingly embrace the Type A Overachiever-People Pleaser Fibromyalgic Personality label and the Fibromyalgia/Mental Illness co-conditions labels. Obviously everyone who has been diagnosed with fibromyalgia isn't an abuse victim, doesn't have PTSD, nor are they all Type A overachievers and people-pleasers with low self esteem issues, nor do they all have mental illnesses, such as Bipolar Disorder. So what is going on here? Abuse and neglect victims develop a wide variety of medical conditions, illnesses and diseases like everyone else, so naturally some of them will be labeled with fibromyalgia and CFS; and in all likelihood there are significant socioeconomic reasons behind this. Does everyone in the fibromyalgia patient support community who vocally goes along with the abuse-trauma and mental illness premises really have these problems? The Dangers of “Me Too!” Syndrome Any chronic illness patient pool will include members who are less knowledgeable, not as well educated, easily impressionable and easily persuadable, who will go along with something just to go along and to fit in with their peers; or they are so desperate for answers if not an outright cure they become all too willing to buy into any theory that comes along that attempts to explain the cause of their illness. Some of these desperate, impressionable patients who buy into the childhood abuse theories may start to go looking for so-called “proof” that fit into this premise by exaggerating or even inventing trouble that isn't really there. If an impressionable patient spends time socializing with fellow support group members who all talk about their childhood abuse problems and blame the abuse for causing their fibromyalgia or CFS, what's to say the impressionable patient won't begin to develop a distorted view regarding her/his upbringing and seek out childhood based “problems” in order to fit into the mold and fit in with her peers? Examples: Suddenly her parents' rules regarding childhood curfews, not being allowed to watch television on school nights until all homework was finished, and rules on teenage dating, wearing make-up, etc. which were a bit stricter than the rules imposed by the parents of some of her childhood friends could suddenly be misread and misinterpreted into indicating that her parents emotionally “abused” her while she was growing up. Or the emotional “abuse” could be: As a teenager she was forbidden to date a boy she had a serious crush on who had several runs-ins with law and was frequently truant from school. Unfortunately the same “Me too!” philosophy holds true when links between fibromyalgia and particular mental illnesses are brought up for discussion as well. From the abstract for “Are support groups beneficial for fibromyalgia patients? The negative effects of social comparison for those who want it most”: Peer support plays an important role in coping with many chronic health problems. Peer support may, however, contain a risk. Research has indicated that people with high social comparison orientation (SCO) are, on the one hand, more interested in contact with peers, but may, on the other hand, be negatively affected when they are confronted with peers who are worse-off....The results supported our hypothesis. Despite the many beneficial effects of peer support, the present study showed that as fibromyalgia patients have a higher need to compare themselves with others, they are more negatively affected by social comparison with peers who are worse-off, because they tend to identify themselves with worse-off others. http://dspace.ou.nl/handle/1820/1206 In a discussion thread, on the 'connection' between fibromyalgia and child abuse trauma (at www.mdjunction.com's fibromyalgia forum), one poster wrote: "I have heard the same thing and I was diagnosed with fibro and also had an abusive childhood. I have heard others with fibro say they had suffered some trauma also. The percentage is really high, like 80 to 90% or something. I really believe when people abuse children they ruin lives" http://www.mdjunction.com/forums/fibromyalgia-discussions/general-support/59274-fibromyalgia-and-childhood-abuse When rumors such as this fly around the online and real world fibromyalgia communities- misconceptions like this poster's false belief that as many as 80% to 90% of those diagnosed with a particular chronic physical medical condition, in this case Fibromyalgia, were child abuse victims and the abuse caused them to develop this medical condition as adults- what sort of social, psychological and medical repercussions are there for this? For every fibromyalgia patient who posted to this thread essentially saying "Me too!" to being abused as a child, how many hundreds, if not thousands of other patients are out there who would have written "Not me!" to a history of childhood abuse, or "I doubt it's true that most FM patients were childhood abuse victims" or "That's not an accurate figure at all, it's not 80% to 90%" if they were posting to that discussion thread? But they didn't post to this thread and apparently they aren't really posting to enough of the child-abuse-causes-fibromyalgia threads in the other fibromyalgia patient forums, groups, and message boards either, so their divergent voices certainly aren't heard as often as they should be. When it comes to the issue of Type A personailty being a caustive factor of Fibromyalgia and CFS, this discussion page features more "Me too!" responses than responses in which posters don't buy into this cause-effect theory. "The Type-A Personality in Fibromyalgia & Chronic Fatigue Syndrome": http://chronicfatigue.about.com/b/2008/02/26/the-type-a-personality-in-fibromyalgia-chronic-fatigue-syndrome.htm The same holds true with links made between Fibromyalgia and Bipolar Disorder. This blog entry, on Bipolar Fibromyalgia discusses a study which links the two conditions, and is followed by responses from Fibromyalgia patients. While one patient dismisses the theory outright, pointing out that the two conditions have very different symptoms; the other respondants jump on the "Me too!" bandwagon. Some have informally diagnosed themselves with Bipolar Disorder and state they feel the link made between the two illnesses is valid: "Bipolar Fibromyalgia" from the Bipolarity website: - http://bipolarity1.blogspot.com/2007/10/bipolar-fibromyalgia.html
- If you have this illness, you must be an abuse-trauma victim too, just like the rest of us. Or, if you have this illness, your brain is malfunctioning and you have bipolar fibromyalgia which explains your aches and pains, your short attention span, and why you rack up credit card debt... This "Me too!" philosophy can be a very damaging mindset for patients to adopt.
- Of course, not every patient buys into the various theories which come down the pike that link Fibromyalgia and CFS with psychological problems:
- “Did You Know You Have a Functional Somatic Syndrome?”:
- http://chronicfatigue.about.com/b/2008/05/15/did-you-know-you-have-a-functional-somatic-syndrome.htm
Posted by juncohyemalis
at 10:29 PM EDT
Updated: Monday, 4 May 2009 10:43 PM EDT
Wednesday, 22 April 2009
Beware the Fibromyalgia Diagnosis Part Twelve
Topic: Medical Care
From: “A Look at Questions Surrounding Fibromyalgia”: MIND OVER MATTER? Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged. Some doctors say their suffering may stem from difficult circumstances rather than disease. http://abcnews.go.com/Business/wirestory?id=6831204 Quote from “Primary Care for Women”, Second Edition by Jeffrey F. Peipert: Factors associated with fibromyalgia in the general population include female sex, divorce, failure to complete high school, low household income, decreased pain threshold, subjective joint swelling, parenthesis, irritable bowel syndrome, moderate or sever impairment demonstrated by the health assessment questionnaire, increased pain, fair or poor self-reported health status, and moderate dissatisfaction with health. (pp. 590-591) From “A Review of Fibromyalgia” by Devi E. Nampiaparampil, MD; and Robert H. Shmerling, MD: Disability secondary to chronic pain appears to result from a combination of patients’ past experiences, self-esteem, motivation, psychological distress, fatigue, ethnocultural background, education, income, and potential financial compensation... Disability in chronic pain does not appear to be related to the severity of the pain. (pp798-799 The American Journal of Managed Care November 2004 ) http://www.hcplive.com/_micro/ajmc/_picture/folder_12/AJMCnovNampiaparampil794.pdf. Some Sociological/Sociodemographic Questions: What is the average household income for someone who has been diagnosed with fibromyalgia? How many or how few people with household incomes over $100,000 are diagnosed with this condition? How many have incomes over $60,000? Are lower income people- the working poor and the public assistance-dependent more likely to be given this diagnosis? What about health insurance coverage and policies? Is it a case of: “the better health insurance coverage you have, the less likely you'll be diagnosed with fibromyalgia?” Are the underinsured more likely to be told they have fibromyalgia versus those with more comprehensive health coverage? Are uninsured clinic patients, those reliant on Medicaid or Charity Care, given this diagnosis at much higher rates then those with health insurance coverage? What about education levels and fields of employment, or lack thereof? Are high school drop-outs and those with just a high school diploma more likely to be diagnosed with fibromyalgia than someone with multiple or advanced college degrees? Are people who work in low-income jobs, the unemployed, and housewives more likely to be diagnosed with fibromyalgia than people with higher paying white collar jobs, financially successful business owners, or people who have good civilian jobs working for State Government, or the Federal government? If a doctor thinks a patient is stupid, or whiny or flaky or neurotic or a pest does that make her a more likely candidate for receiving the fibromyalgia diagnosis? Are patients judged by their appearance? Are patients who appears to be lesser educated and lower income through their mannerisms, speech, and physical appearance (such as the quality of clothing and accessories they wear) more likely to be viewed with less credibility and have their symptoms taken less seriously versus patients who comes across as better educated and more affluent? Can such distinctions lead some doctors to casually slap the Fibromyalgia diagnosis label on patients from lower educational and financially modest backgrounds? Is a female patient who is either shy, timid and hesitant to speak; or who comes across as nervous, anxious, and easily excitable; or who uses a lot of emotion-laden words to describe her physical symptoms more likely to have her ailments diagnosed as fibromyalgia than a female patient who comes across as calm, cool, and collected? Are women who are overweight more likely to be hastily given the fibromyalgia diagnosis versus women who aren't overweight? If a doctor knows the patient has, or did at one time suffer from depression or anxiety, does this increase the likelihood the patient will be automatically told her (or his) symptoms are caused by fibromyalgia, with little or no diagnostic testing done to rule out other medical conditions with similar symptoms? Does the same hold true if the patient responds with a “yes” when questioned about whether or not she was ever in a car accident, or ever had surgery, or was abused as child, or had beaten by a boyfriend or husband, or if she was ever raped, or if her parents ever consumed alcohol during her childhood, or if she smokes, drinks or had ever used illegal drugs? From “Bone health in patients with fibromyalgia” by A. W. Al-Allaf, P. A. Mole, C. R. Paterson and T. Pullar1: Patients with FMS were more likely to be smokers compared with controls (52.5 and 18.9% respectively,P¼0.006). Patients were found to have a higher BMI compared with controls (28.9 and 25.8 respectively, P¼0.016). FMS patients were found to be more likely to have had previous steroid therapy compared with controls (42.5 and 8.1% respectively, P¼0.001). However, FMS patients were significantly less likely to take alcohol on a regular basis (27.5 and 78.4% respectively, P<0.001). www.fibromynet.nl/pdf/voedingssupplementen-vitamined.pdf From Rx AlterativeMedicine.com “Fibromyalgia Syndrome, Chronic Fatigue Immunodeficiency Syndrome FMS”: The causal factors that most frequently contribute to FMS/CFIDS are addressed in an online Comprehensive Health Assessment found on the link listed below. The assessment, all easily accomplished from the convenience of your computer, will give you good insight into whether you are experiencing any of the common causes of FMS/CFIDS. Those factors include: Candidiasis , a common yeast problem frequently associated with FMS/CFS. Food allergy is usually associated with Candidiasis and undetected in most cases, especially the delayed onset type. Gastrointestinal disorders including the "leaky gut" and microbial parasites, among others, are often a factor. Toxic metals including lead, mercury, cadmium and aluminum are unsuspected culprits and should be considered in persons who have been exposed to them. Hormonal imbalances including thyroid, adrenal and progesterone insufficiencies as well as others may be a problem. Poor diet, junk food, smoking, obesity, and alcohol should always be considered. In our clinic, every FMS/CFS patient completes the Comprehensive Health Assessment mentioned above. We consider it to be a required part of every patient's program. It is very easy to complete in spite of being extensive and global in its evaluation of your potential for these FMS/CFIDS causal factors. It is done at your convenience and time table, all online. The Contributing Factors to Fibromyalgia and Chronic Fatigue Syndrome As you have read above, FMS/CFIDS are caused by a variety of different conditions which on the surface would seem to be unrelated to fibromyalgia. There is a tremendous amount of literature available on FMS/CFIDS and your challenge is to sort through it all to see what applies to you. http://www.rxalternativemedicine.com/articles/fibromyalgia.html Quote from the abstract for Characteristics of patients with fibromyalgia syndrome assisted in a hospital of Salvador, BA, Brazil. COSTA, Sergio Ricardo Matos Rodrigues da et al.: We found a significant association of low family income, sleeping disturbances and smoking habit with a larger amount of tender points. http://www.scielo.br/scielo.php?pid=S0482-50042005000200004&script=sci_abstract Quote from the abstract “Quality of life, functional disability and lifestyle among subgroups of fibromyalgia patients : The significance of anxiety and depression”: Anxiety and depression interacted to yield relatively high consumption of coffee and cigarettes among the anxious and depressed subgroup, and this effect emerged only after the elimination of confounding effects of age and duration of the fibromyalgia disease. http://cat.inist.fr/?aModele=afficheN&cpsidt=1216145 Has Fibromyalgia become a diagnostic label which is largely based upon behavioral stereotypes both here in the United States and abroad? The Double-Edged Sword of Alcohol Use Some doctors ask their fibromyalgia patients about their personal backgrounds and childhood and this can potentially include the loaded question: “Did your parents drink when you were a child?” Alcohol use has different connotations when related to socioeconomic factors, race and ethnicity. Obviously both non-abuse related alcohol consumption and alcoholism exists across the socioeconomic spectrum, and in all racial and ethnic groups. But, when it comes to social class, social standing, education, career and income, race and ethnicity there are societal-based stereotypes which can effect how a “yes” answer to the above question will be perceived. In our society, for middle and upper income adults, (particularly for white middle and upper income adults) with higher levels of education and well paying white collar jobs, alcohol consumption, especially in social or romantic settings, bears far less of a negative perception. Drinking quality wines with meals; or choosing champaign for special occasions; drinking liqueurs, mixed drinks and microbrewery beers; being knowledgeable about wine; attending wine tastings; going on 'wine country tours' and the like is considered sophisticated and chic. But when it comes to societal perceptions regarding alcohol consumption, even just occasional consumption in social settings, by lower-income workers, and the poor, by anyone who has recently developed a chronic health problem, as well as by members of racial and ethnic minority groups, negative societal stereotyping can come into play. If a white, middle class or wealthy patient is asked whether or not her parents consumed alcohol during her childhood, and she answers “yes”, the likelihood her questioner may or will automatically assume the alcohol consumption equated with alcoholism and domestic violence can differ somewhat than if that question is posed to a low-income white, or low or middle income black, Hispanic or American Indian patient. The same socioeconomic and racial/ethnic based stereotypes may very well influence how the medical or social support caregiver views the patient if the patient answered “yes” when asked if she or he ever consumes alcohol. With efforts being made to blame many medical problems on “bad personal behaviors” like consuming alcohol, even when that behavior have nothing to do with the development of the patient's medical condition, negative and erroneous assumptions can still be made about any patient who isn't a teetotaler. With efforts made to blame various illnesses and diseases in adults, including musculoskeletal and autoimmune diseases on childhood domestic abuse at the hands of parents and other caregivers, the question of “Did your parents drink when you were a child” becomes a loaded question particularly in light of societal biases and stereotypes against lower income whites and those from racial and ethnic minority group, and this factor needs to be considered. Can a lower income/poor white, or non-white patient with minimal or no health insurance coverage who presents with chronic fatigue and pain, who answers “yes” to parental alcohol consumption have that “yes” used in part by her medical caregiver to reach a hasty diagnosis of fibromyalgia, based upon the stereotypes, biases and perceptions that exist in our society? Is Fibromyalgia Partly a Socioeconomic and Social Stereotype Based Diagnosis? A wide variety illnesses, diseases and medical conditions have symptoms that are similar to fibromyalgia, yet Fibromyalgia is currently a popular “fad” diagnosis for all that ails many people, particularly women; so what roles do socioeconomics, medical care coverage or lack thereof, and social class, gender, racial and ethnic stereotypes play within the medical community which effects physician diagnostic decision making? How do these factors help determine which patients will quickly receive the Fibromyalgia label with little or no medical testing to rule out other conditions, and which patients' doctors will look elsewhere for an answer through thorough diagnostic testing? On average, how many medical tests are run on a patient with good to excellent health insurance coverage before her doctor even considers the fibromyalgia diagnosis? How many medical tests are run on an underinsured or uninsured patient before her doctor ever considers the fibromyalgia diagnosis? It would be interesting to see studies run by Sociologists (academic Sociologists, not social workers) which strictly focused on socioeconomic and educational backgrounds, racial and ethnic factors, and levels of health insurance coverage or non-coverage regarding who is more likely to receive the Fibromyalgia diagnosis, particularly in situations where either few or no laboratory or hospital-based medical tests are performed to first rule out other medical conditions with similar symptoms. It would also be interesting to read some Criminolgists' opinions on linking Fibromyalgia and CFS to child beating and child molestation, as an emotional symptom of suffering physical or sexual abuse. Have those criminologists who've interviewed the offspring of violent criminals (whose victims included family members) ever noticed any tendencies in these offspring to suffer from fibromyalgic and chronic fatigue-like medical problems? Fibromyalgia and Gender, Race , Ethnicity and Occupation From the “Fibromyalgia Pain in African Americans” webapge: An estimated three to six million people suffer from fibromaylgia in the United States...African-American women account for a good portion of those diagnosed. Studies have shown that African-American women with fibromyalgia suffer more widespread severe pain than Caucasian women.. Treatment for fibromyalgia pain has varied for African-Americans.. A study published in 2003 discussed the lack of referrals for specialized pain management for African-Americans. Fast Facts: A study revealed that African-Americans have a higher severity of chronic pain and an increased sensitivity to pain.. Until recently, there were few studies on African-Americans and fibromyalgia.. Trials are being conducted to study fibromyalgia pain in African-Americans. http://organizedwisdom.com/Fibromyalgia_Pain_in_African_Americans
Excerpts from “Patients of Color” by Sabrina Dudley Johnson: Why is it important to discuss race and fibromyalgia? Many minority fibromyalgia patients have recounted incidents with physicians who believed, “Since there are no minorities discussed in fibromyalgia research, they must not have it.” Members of FACES (Fibromyalgia Association Created for Education and Self-help), including African American, Latina, and white people, males and females, civilians and law enforcement officers, drove three hours to a seminar. During the Q&A session, one member asked, "When are researchers going to do studies on people of color, and police officers with fibromyalgia?" The researcher replied "Never! They don't exist!".. Marcellus Walker, MD, and Kenneth Singleton, MD, address race and healthcare, stating: “In the current climate of ‘political correctness,’ many people consider it inappropriate to separate people on the basis of race, but, when it comes to health, race really does matter. African Americans . . . will soon experience an epidemic of cancer, fibromyalgia, chronic fatigue, and other degenerative diseases.”.. A University of Alabama study revealed that African Americans have a higher severity of chronic pain, an increased sensitivity to pain, and a lower pain tolerance threshold than their white counterparts. The study went on to relate that coping styles, cultural responses to stress, and biases towards/from healthcare providers may be contributing factors. Patrick*; an African American law enforcement officer with fibromyalgia, was given a referral for massage therapy. The physician called the therapist and asked if she had an opening for a male patient. She replied yes. The officer was ushered into a treatment room. The therapist entered and, upon seeing her new patient, ran from the room. "He didn't tell me you were black!" she snapped... FACES was founded by people of color and public safety workers with fibromyalgia. We wanted to ensure that the diversity of people affected by this condition receive equal recognition in research and awareness projects. We also realize that the special issues of pain management disparities and cultural competency must be addressed on multiple fronts. Therefore, FACES concentrates on partnerships with other fibromyalgia organizations, government agencies, members of academia, disability organizations, members of law enforcement, and various community-based organizations... http://www.fmaware.org/site/News2?page=NewsArticle&id=6282 Unfortunately FACES was forced to shut down because its founder Sabrina Dudley Johnson has been struggling with worsening health issues. You can read more about Sabrina Johnson and FACES here: http://fmsglobalnews.wordpress.com/2008/01/06/the-demise-of-fibromyalgia%E2%80%99s-faces-inc/ Beyond medical discriminatory issues faced by members of racial and ethnic minority groups; when it comes to the fibromyalgia diagnosis, the fact that men too are diagnosed with fibromyalgia is often ignored in favor of painting it as a “woman's illness”. Also occupation seems to play a role for some patients. First responders of both genders- police, firefighters and EMTs- along with members of the healthcare profession- nurses, and even some doctors- are being diagnosed with fibromyalgia and CFS. Musculoskeletal and autoimmune illnesses are on the rise among first responders in general. First responders and healthcare providers come into contact with a lot of people as part of their profession- a lot of injured and ill people- so they are frequently exposed to various bacteria and viruses. Also with first responders, particularly firefighters, they are exposed to hazardous materials, toxic fumes/toxic smoke and such as part of their everyday jobs. But, unfortunately “job stress” has become the convenient medical excuse for the rise in such illnesses in healthcare workers and first responders. Several doctors who are involved with Fibromyalgia and CFS research and advocacy suffer from these conditions themselves. They are: Drs. Mark Pellegrino, Daniel Dantini, and Devin Starlanyl.
Posted by juncohyemalis
at 6:20 PM EDT
Updated: Friday, 24 April 2009 12:53 PM EDT
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