Give a Yiti

Family - If anyone is interested, this is my letter to Dr. Dan and send similar one to Prevention Magazine. Thank you for your recent show highlighting fibromyalgia. Many of us feel your guest was very negative about fibromyalgia and did not really acknowledge this disorder. For the 5% of our population, 80% of who are women, that have fibromyalgia, it is a very real disorder. I am a volunteer for the Ontario Fibromyalgia Society in Toronto, Ontario, Canada and we have over 2500 members. Reports of fibromyalgia date back to the 17th century referring to the disorder as muscular rheumatism, fibrositis, and fibromyositis. It is classified as one of the rheumatic illnesses, which is non-articular in nature. In plain language, it means that it is pain in the soft tissues surrounding the joint, not in it, which is what occurs with osteo or rheumatoid arthritis. One of the consequences of this lack of inflammation of the tissues is that when people with fibromyalgia first begin trying to discover what is wrong with them - usually by approaching their GPs - lab tests and X-rays prove negative, but the pain is very real.=20 As fibromyalgia progresses, symptoms can become more severe and systemic, affecting more and more areas of the body. A variety of things can trigger the syndrome, such as stress or a physical or emotional trauma including a motor vehicle accident, a bad fall, a viral infection or a death in the family. Because fibromyalgia has no known cause and is characterized by symptoms that can be common in other conditions, fibromyalgia can be difficult for patients to explain and doctors to diagnose. To physicians who know little about fibromyalgia we begin to sound like hypochondriacs. To those who have gone many years without a correct diagnosis, and that is a large number, frustration, low self-esteem and often depression can be the result, adding to the already existing symptoms of fibromyalgia. What are these symptoms? Almost all people with fibromyalgia exhibit 5 general characteristics. 1. Profound fatigue - no matter how little or how much we sleep, we wake feeling profoundly tired, as if we have been run over by a truck and more tired than when we went to bed. This can affect the ability to function during the day. 2. Memory loss - not just the type of memory loss associated with losing your keys - confusion, word mix-ups, trouble concentrating or 'memory blanks' can result and again can affect the ability to work effectively e.g. accountant, executive, writer. The result can be job loss, loss of income and loss of self-esteem.=20 3. Overall ache and pain - not just the aches and pains associated with growing older, but pain which is as severe or more so than rheumatoid arthritis - _object_ive tests have shown it can be as severe as cancer pain. Learning to live with constant pain is not easy and puts limitations on every aspect of daily living. 4. Irritable bowel - pretty well speaks for itself and can be very incapacitating to many. 5. Non-restorative sleep - no matter how little or how much we sleep, we seem to miss the deep sleep stage of Level 4, the stage in which the body repairs itself. Dr. Harvey Moldofsky, one of the world's leading researchers in sleep medicine and fibromyalgia, a psychiatrist and head of the Toronto Hospital's Sleep Medicine Clinic, was the founder of this abnormal sleep pattern, which is not the same as insomnia. A lack of deep restorative sleep, known as REM sleep, can be both a symptoms and a trigger (site study with med students). There are additional symptoms of fibromyalgia which can range from morning stiffness, dizziness, severe headaches, vision and hearing problems, jaw pain, severe chest pain and numbness to sensitivities to weather, noise and light, just to name a few. While these symptoms can vary in number and degree of severity from individual to individual, they are identical for all people with fibromyalgia. Researchers feel that this is one of the strongest arguments for the existence of fibromyalgia as a physical disorder, which can be very disabling. worldwide criteria were established in 1990 to help the medical community to correctly and _object_ively diagnose fibromyalgia. They include: =B7 Overall ache and pain =B7 11 or more of 18 tender points, specifically located in all four quadrants of the body. What are 'tender points'? Tender Points are specific areas of the body, which are extremely sensitive to pressure and are identical in all people with fibromyalgia. They were discovered by Dr. Hugh Smythe, a rheumatologist at Wellesley Hospital in Toronto, one the world's leading experts on muscular skeletal disorders and specifically, the rheumatic diseases. For those of us with fibromyalgia, finally having a name and diagnosis is a relief. But then comes the realization that we must live with this disorder for the rest of our lives.=20 Treatment is aimed at reducing symptoms, not curing the underlying condition. Learning to cope with fibromyalgia's debilitating pain can be a lengthy and difficult process. While there is no cure for fibromyalgia, there are things we can do to improve our quality of life and manage the pain.=20 A person with fibromyalgia must become a self-manager and educate themselves, and often their health professionals, about the disorder. Low doses of anti-depressants are often prescribed in order to turn off pain messages to the brain and promote sleep. A regular sleep routine is extremely important. Researchers feel that a physician knowledgeable in fibromyalgia must personalize a therapy program for fibromyalgia to meet the needs of the individual. Although the therapy program will be very subjective and vary from person to person, it does have some common elements. These elements include gentle, low impact aerobic exercise, careful stretching, strengthening of the muscles and increasing stamina. The importance of relaxation, pacing and good nutrition is stressed as well. What works for one person won't help another and may produce intolerable side-effects in yet another. Support groups, which usually meet monthly, exist throughout the world. These groups offer education and emotional support to their members and their families. They share information, invite guest speakers to talk on topics relevant to fibromyalgia, and many have lending libraries with literature and videos on fibromyalgia. As well, many of us with fibromyagia give support to each other on-line through the Internet. Our medical advisors include the two doctors I previously mentioned - Dr. Hugh Smythe and Dr. Harvey Moldofsky - as well as Dr. Jack Reynolds, a rheumatologist from the Toronto Hospital, Western Division, and Dr. Manfred Harth, a rheumatologist from the Health Sciences Centre of University Hospital in London, Ontario and consultant to the Fibromyalgia Daycare Program at that hospital. Since the majority of health professionals know little about fibromyalgia, the Ontario Fibromyalgia Association is very fortunate to have 4 such experts on our medical advisory committee. As you can well imagine, one of the most important mandates of the OFA is to educate the medical community and the general public about this invisible disability. The OFA also operates a hotline; the Arthritis Bell Connection to answer members questions (416 967-5679 or 1-800 321-1433). The majority of questions being fielded are related to fibromyalgia, not arthritis. What is the cost of fibromyalgia to society as a whole? Fibromyalgia is one of the biggest wastes of health care dollars that exists today. (and what an appropriate time to discuss this issue). To begin with, incorrect diagnosing can result in much unnecessary testing and even unnecessary surgery, resulting in delays in treatment and rehabilitation. One of the greatest hidden costs of fibromyalgia to society is long-term disability payments. Many people with fibromyalgia cannot work at paid jobs because their symptoms are so severe. One Canadian insurance firm estimates that 9% of its cases resulting in disability payments are due to fibromyalgia. These payments amount to between $11-12 million yearly for this one company alone. If these figures were extrapolated to include all private disability insurers in Canada, the financial impact on our society becomes staggering - almost $200 million yearly. This does not even take into account other sources of disability payments such as Canada Pension disability or individual, short-term or long-term disability plans. It is worth mentioning that there are several areas that research will be focusing on in the future. 1. Possible chemical imbalances in the brain 2. Studies of muscle tissues even though muscle biopsies seem to be normal 3. Studies of the CNS (central nervous system) as researchers, including our own here in Canada, feel that the CNS is involved in ways that are not yet understood 4. Benefits and problems associated with medication 5. Dr. Moldofsky's sleep studies - these studies mush continue; as well, Dr. Moldofsky has recently begun reproductive hormone studies 6. Dr. Smythe's theory of referred pain from neck and back resulting from evolutionary problems of hyperextension need further study as well May 12 is the birthday of Florence Nightingale, a nurse and hero to thousands of soldiers in the Crimean War. It was her selfless dedication to those less oftunate that inspired William Henry Dunant, a Swiss banker, to found the International Red Cross in her honor. Florence Nightingale is eulogized in history as a fighter. She lived out the latter half of her life battling symptoms reminiscent of CFS, FMS, MCSS and PGS. In memory of Florence Nightingale, May 12 has been selected as the International Awareness Day for these 4 disorders. There are many support grops and individuals from around the world who have worked long and hard to bring the trragic toll of these interrelated illnesses to the attention of the medical community, the
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Jan I think that is a great letter. I'm sure my letter will not sound nearly that good, I'm not a writer, I just barely made throu Comp.Classes. But that won;t matter as long as I send a letter. With yours, and Louise' and others that can write those of us that can't write will at least get the message across. They can't publish all letters anyway, but the more they get the faster they will take this serious. Tahnk you. Neva This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Smile, it's the second best thing you can do with your lips.

Jan, I thought your letter was EXCELLENT!!  Thank you so much for saying it so well for us! Michelle I didn't climb all the way to the top of the food chain to eat brussel sprouts!

Family - If anyone is interested, this is my letter to Dr. Dan and send similar one to Prevention Magazine. Thank you for your recent show highlighting fibromyalgia. Many of us feel your guest was very negative about fibromyalgia and did not really acknowledge this disorder. For the 5% of our population, 80% of who are women, that have fibromyalgia, it is a very real disorder. I am a volunteer for the Ontario Fibromyalgia Society in Toronto, Ontario, Canada and we have over 2500 members. Reports of fibromyalgia date back to the 17th century referring to the disorder as muscular rheumatism, fibrositis, and fibromyositis. It is classified as one of the rheumatic illnesses, which is non-articular in nature. In plain language, it means that it is pain in the soft tissues surrounding the joint, not in it, which is what occurs with osteo or rheumatoid arthritis. One of the consequences of this lack of inflammation of the tissues is that when people with fibromyalgia first begin trying to discover what is wrong with them - usually by approaching their GPs - lab tests and X-rays prove negative, but the pain is very real.=20 As fibromyalgia progresses, symptoms can become more severe and systemic, affecting more and more areas of the body. A variety of things can trigger the syndrome, such as stress or a physical or emotional trauma including a motor vehicle accident, a bad fall, a viral infection or a death in the family. Because fibromyalgia has no known cause and is characterized by symptoms that can be common in other conditions, fibromyalgia can be difficult for patients to explain and doctors to diagnose. To physicians who know little about fibromyalgia we begin to sound like hypochondriacs. To those who have gone many years without a correct diagnosis, and that is a large number, frustration, low self-esteem and often depression can be the result, adding to the already existing symptoms of fibromyalgia. What are these symptoms? Almost all people with fibromyalgia exhibit 5 general characteristics. 1. Profound fatigue - no matter how little or how much we sleep, we wake feeling profoundly tired, as if we have been run over by a truck and more tired than when we went to bed. This can affect the ability to function during the day. 2. Memory loss - not just the type of memory loss associated with losing your keys - confusion, word mix-ups, trouble concentrating or 'memory blanks' can result and again can affect the ability to work effectively e.g. accountant, executive, writer. The result can be job loss, loss of income and loss of self-esteem.=20 3. Overall ache and pain - not just the aches and pains associated with growing older, but pain which is as severe or more so than rheumatoid arthritis - _object_ive tests have shown it can be as severe as cancer pain. Learning to live with constant pain is not easy and puts limitations on every aspect of daily living. 4. Irritable bowel - pretty well speaks for itself and can be very incapacitating to many. 5. Non-restorative sleep - no matter how little or how much we sleep, we seem to miss the deep sleep stage of Level 4, the stage in which the body repairs itself. Dr. Harvey Moldofsky, one of the world's leading researchers in sleep medicine and fibromyalgia, a psychiatrist and head of the Toronto Hospital's Sleep Medicine Clinic, was the founder of this abnormal sleep pattern, which is not the same as insomnia. A lack of deep restorative sleep, known as REM sleep, can be both a symptoms and a trigger (site study with med students). There are additional symptoms of fibromyalgia which can range from morning stiffness, dizziness, severe headaches, vision and hearing problems, jaw pain, severe chest pain and numbness to sensitivities to weather, noise and light, just to name a few. While these symptoms can vary in number and degree of severity from individual to individual, they are identical for all people with fibromyalgia. Researchers feel that this is one of the strongest arguments for the existence of fibromyalgia as a physical disorder, which can be very disabling. worldwide criteria were established in 1990 to help the medical community to correctly and _object_ively diagnose fibromyalgia. They include: =B7 Overall ache and pain =B7 11 or more of 18 tender points, specifically located in all four quadrants of the body. What are 'tender points'? Tender Points are specific areas of the body, which are extremely sensitive to pressure and are identical in all people with fibromyalgia. They were discovered by Dr. Hugh Smythe, a rheumatologist at Wellesley Hospital in Toronto, one the world's leading experts on muscular skeletal disorders and specifically, the rheumatic diseases. For those of us with fibromyalgia, finally having a name and diagnosis is a relief. But then comes the realization that we must live with this disorder for the rest of our lives.=20 Treatment is aimed at reducing symptoms, not curing the underlying condition. Learning to cope with fibromyalgia's debilitating pain can be a lengthy and difficult process. While there is no cure for fibromyalgia, there are things we can do to improve our quality of life and manage the pain.=20 A person with fibromyalgia must become a self-manager and educate themselves, and often their health professionals, about the disorder. Low doses of anti-depressants are often prescribed in order to turn off pain messages to the brain and promote sleep. A regular sleep routine is extremely important. Researchers feel that a physician knowledgeable in fibromyalgia must personalize a therapy program for fibromyalgia to meet the needs of the individual. Although the therapy program will be very subjective and vary from person to person, it does have some common elements. These elements include gentle, low impact aerobic exercise, careful stretching, strengthening of the muscles and increasing stamina. The importance of relaxation, pacing and good nutrition is stressed as well. What works for one person won't help another and may produce intolerable side-effects in yet another. Support groups, which usually meet monthly, exist throughout the world. These groups offer education and emotional support to their members and their families. They share information, invite guest speakers to talk on topics relevant to fibromyalgia, and many have lending libraries with literature and videos on fibromyalgia. As well, many of us with fibromyagia give support to each other on-line through the Internet. Our medical advisors include the two doctors I previously mentioned - Dr. Hugh Smythe and Dr. Harvey Moldofsky - as well as Dr. Jack Reynolds, a rheumatologist from the Toronto Hospital, Western Division, and Dr. Manfred Harth, a rheumatologist from the Health Sciences Centre of University Hospital in London, Ontario and consultant to the Fibromyalgia Daycare Program at that hospital. Since the majority of health professionals know little about fibromyalgia, the Ontario Fibromyalgia Association is very fortunate to have 4 such experts on our medical advisory committee. As you can well imagine, one of the most important mandates of the OFA is to educate the medical community and the general public about this invisible disability. The OFA also operates a hotline; the Arthritis Bell Connection to answer members questions (416 967-5679 or 1-800 321-1433). The majority of questions being fielded are related to fibromyalgia, not arthritis. What is the cost of fibromyalgia to society as a whole? Fibromyalgia is one of the biggest wastes of health care dollars that exists today. (and what an appropriate time to discuss this issue). To begin with, incorrect diagnosing can result in much unnecessary testing and even unnecessary surgery, resulting in delays in treatment and rehabilitation. One of the greatest hidden costs of fibromyalgia to society is long-term disability payments. Many people with fibromyalgia cannot work at paid jobs because their symptoms are so severe. One Canadian insurance firm estimates that 9% of its cases resulting in disability payments are due to fibromyalgia. These payments amount to between $11-12 million yearly for this one company alone. If these figures were extrapolated to include all private disability insurers in Canada, the financial impact on our society becomes staggering - almost $200 million yearly. This does not even take into account other sources of disability payments such as Canada Pension disability or individual, short-term or long-term disability plans. It is worth mentioning that there are several areas that research will be focusing on in the future. 1. Possible chemical imbalances in the brain 2. Studies of muscle tissues even though muscle biopsies seem to be normal 3. Studies of the CNS (central nervous system) as researchers, including our own here in Canada, feel that the CNS is involved in ways that are not yet understood 4. Benefits and problems associated with medication 5. Dr. Moldofsky's sleep studies - these studies mush continue; as well, Dr. Moldofsky has recently begun reproductive hormone studies 6. Dr. Smythe's theory of referred pain from neck and back resulting from evolutionary problems of hyperextension need further study as well May 12 is the birthday of Florence Nightingale, a nurse and hero to thousands of soldiers in the Crimean War. It was her selfless dedication to those less oftunate that inspired William Henry Dunant,
... read more »

5. Non-restorative sleep - no matter how little or how much we sleep, we seem to miss the deep sleep stage of Level 4, the stage in which the body repairs itself.  A lack of deep restorative sleep, known as REM sleep, can be both a symptoms and a trigger (site study with med students). <big snip

Great letter Jan !!!! Lettin 'em have it !!! But with tolerance and finesse!!! Thanks for the advocacy. Warm Analgesic thoughts, Tamara