1. I have read and support the Fibromyalgia syndrome/myofascial pain syndrome petition. I have been with fibromyalgia for about twelve years now, and have been in constant severe pain. I spent several years and several thousand dollars searching for the cause of my pain. I am now living with my parents, unable to work, and have a daily routine that consists of stretching exercise, ice packs, and pain medication. Even walking, standing and sitting are painful. Florida
  2. I was diagnosed with FMS in July of 1977. The disease has changed my life. I have had to relinquish careers as a chef, an academic librarian, and an attorney, even though I fought far beyond what my body could endure to hang on to my financial independence. Each time my body was unable to do the job I had, I retrained so I wouldn't be a burden on anyone. But when the overwhelming fatigue and the fibro-fog hit and hang on sometimes you just have to give in - at least for a while. Please add my name to the petition for recognition and funding of research on FMS and MFS. There also needs to be an awareness of the devistating financial burden of the disease. If you are aware of anyone who is working specifically on that aspect of the disease, or studying the special difficulties of FMS suffers who live alone, I would be interested in assisting them in any way I could. Thank you.
  3. I agree with this petition. every sweet memory and events i have had for many years, is tainted with the agonizing pain of fm and mps (mps- the drs will not document!) i do not wish to live a long life in spite of all the little things i'm still able to enjoy. can't imagine it. i've had fms/mps for nearly 8 yrs after a back injury about 2 yrs before that was never treated. Washington
  4. Louise, I was able to get 4 signed right here in my household last night. I forward it to at least a dozen of family and friends who have computers and can sign by email. I sure hope this will get some attention. We need it! Virginia
  5. I too am suffering with fibromyalgia. There is a great need for people to be educated about this disease. I hear constantly about how everyone aches and it is about growing older. No, it is not. When you are only 37 and have always taken good care of yourself except for a large dose of stress at work it is a constant struggle. The struggle being that you are not the same person that you used to be, despite always hearing you look so good. There is just something about people doubting you and that you are making this disease up or that it is the disease of the 90's There truly needs to be more researched on this.
  6. Thanks for the reply. I checked out your website. You have done a fantastic job! I also signed your guest book (and read some of the previous comments). MD
  7. I gave your petition to some Chiropractors yesterday who will spread it around. This Dr. is wonderful and on every board of everything, even the city chamber of commerce. I have an appointment with another doctor tomorrow and I will pass it on to him. He is also wonderful. I will e-mail the petition to family and friends as well. I will get back to you with some more names and addresses of people who have asked me to include their names. I'm a big mouth, or shall I say, activist and I will do all I can. I hate this disease and people don't want to employ you if you have it and we still need to work or be able to collect disabilty, do research and live a better life. I have my first grandaughter on the way in May and I don't want her to ever get this. My pregnant daughter stands a good chance of getting it, so I fight for them as well. I have a web site as well if you would like to take a look at it.
  8. I would like to make more people understand about this disease. My supervisor does not believe there is anything wrong with me and treats me awful. We need to make people understand about this terrible thing. I would be willing to take this to Washington myself if we had enough support. Thank you for writing and telling me about this. Indiana.
  9. I have suffered with FMS for 20 years now and it has been a nightmare almost leading me to suicide for the lack of knowledge of doctors. The lack of sympathy from family because of the unawareness of the problem (publicity, etc.). BC
  10. La présente a pour but de signer la pétition en qualité de membre du C.A de l'Association internationale «Ensemble contre la douleur» à l'entrée de votre page WEB Bravo!
  11. Grand merci pour votre article sur la fibromyalgie, cela m'a permis de comprendre beaucoup de choses et entre autre pourquoi j'ai ete mal soignee et mal comprise depuis presque 10 ans ...le syndrome a ete diagnostiquer aujourd'hui, mais n'ayant pas eu beaucoup d'explications je voulais en savoir un peu plus...
  12. I was diagnosed just 4 years ago but it took 2.5 years to reach a diagnosis. It is torture. Please don't allow another valuable being to take their own life because of stupidity and hopelessness on the part of those who stand in the way of true, valid reseach and care (therapy). NM
  13. I did send it on to several people around the U.S. They all either have FMS or know how much I have suffered with this. Thank you for being a leader in getting more funding for us. MO
  14. Thank you Louise for letting me know about your web site. I was planning on having my family sign the petition also, but they aren't here right now. Do you have FM/CFS too? If so, how do you find the energy to be so involved in the FM problem? It seems like all my energy is sucked right out of me if I do the lest little thing. You, and the rest of the people involved in the petition drive, have my admiration and heartfelt thanks!!
  15. I would like to add my name to your petition. I currently have been asigned to a doctor who doesnt even believe in this diagnosis. I am not being given any pain meds -
  16. Thanks Louise, I think I received them in the mail today. I will do what I can at this end. I have many children, so maybe I can send them each a copy and ask them to get signatures too. Nothing ventured, nothing gained. Good luck to us all!
  17. Isn't it amazing how many of us have this all over the world? I never evenheard of it until 3 years ago when I was diagnosed. Thanks again for giving me the chance to participate.
  18. I have been suffering from this syndrome since Dec. 1995. It is the most horrible pain I have ever experienced..I am in pain every day 24 hours a day..because of this I have lost my vintage clothing business of 15 years, the last 3 years has seen my business fail because I have been too disabled to run it.. Whatever can be done to erradicate this horrible syndrome I am for. I am in a chat room at aol and 12 people that I know of have this, their lives have changed from useful people to disabled and depressed people in the prime of their lives.
  19. This e-mail hereby acknowledges that I have read the attached Petition for Fibromyalgia to petition for more research and heightened awareness and education on this currently understudied and widely misunderstood subject so that the millions of people who suffer from it around the world can go on to lead quality lives and so that the medical profession will be able to treat patients in the most effective manner and so that patients will be treated with integrity rather than skepticism, and with compassion rather than skepticism. The pain is a killer and is definitely not in anyone's head. The pain is atypical and moves around the body in varying degrees of pain, unexplainably. It causes great stress and interferes with daily activities. It is a debilitator and can be compared to the chinese torture treatment, like one small drop of water on the head at a time, every second of the day, for years. One drop itself won't kill you, but over time, the pain causes burn-out and deterioration of the mind, spirit, and body. CA
  20. I have been suffering from Fibromyalgia for four years. It's the worst thing that's ever happened to me. NC
  21. I checked out your web site and you have a lot of good links on the subject of Fibromyalgia. It's good to see that this disease is being brought to the attention of people who may be able to do something to help. I was in constant pain for years until I was able to get Disability based on my Arthritis. People shouldn't have to go through that. It was so bad that I considered suicide on almost a daily basis when I was sitting at my desk and really hurting so I couldn't think of anything else.
  22. Count me IN!! My sister suffers from this debilitating disorder and we are constantly frustrated by the medical community and SSI disability. It just ISN'T recognized. More needs to be done to help the people with this disease by insurance companies and doctors. It SHOULD be recognized as a disability. This disease is NOT "in the hypochondriac minds" of those who suffer. Those who do not think that it is should live with a FMS person for a few months. That MIGHT give them an idea!! My sister and her family now live with me and my family. Because of FMS she cannot work. Because she cannot work, she and her family do not have an income that will allow them to support themselves. Would you be willing to give up YOUR freedom due to a physical problem that everyone thinks is "only in your head"? Could you live with family? How about not being able to make plans for the future (even the next day) because you don't know how you're going to feel?? Hopefully this symposium will be an eye opener for many professionals that will be dealing with FMS in the future and give them a greater understanding of the issues before the people with FMS. Sincerely NH
  23. I have had symptoms of FM/MPS since 1967 or before. I was finally diagnosed in April 1998. PA
  24. I would like to sign the petition. This horrific disease has stolen my life and everything and everyone I cared about. My entire family thinks I'm insane because I look fine. I guess they think I like spending my life in the house, losing a great career, and living on pain medication. My friends? are all gone because they can't be tied into visiting a shut in who used to do everything for everybody. I'm not usefeul enough for anybody to want to associate with me. If your friends and family have stood by you then you are blessed. NJ
  25. Fibromyalgia is real. Please hear our pain. FL
  26. I have suffered with FM for 10 years now.....     it has impaired me to the point that on some days I can hardly get up.I hurt so bad .I can not sleep at night witout medication..I miss so much work time I can not keep a job.     I went from management to clerical work and still the effort was to much    My quality of life has diminished so much that I feel at time s it is not even worth living..I get extremly depressed. Thank You for making a difference! FL
  27. Hi girl, my dad had this thing when he was in his mid sixties, admittedly he tought of jumping off a bridge. The suggested cure was to open up the back of his head and sever the facial muscles, trigeminal or trifacial if I have the terms right. He went for it, rightly or wrongly, was his choice, that or the bridge. Awful. Result was that the whole side of his face became paralyzed, became deaf and blind on that side, mouth pulled down and insensitive. Terrible, and aesthetic surgery later came, failed, and worsened the situation. It could be in my genetics so I signed, all my sympathy to all sufferers. R&D is indeed required.
  28. I hope that those fortunate enough to not have endured FMS symptoms are able to accept that the symptoms do exist, and support research to treat the disease. I suspect that a complete cure is possible but one must believe there is a problem in order to solve it. CA
  29. I am especially concerned about the undue pain and suffering imposed upon persons with this disorder by physicians and government harassment regarding the underuse of appropriate painkillers.
  30. Both myself and my father have Fibromayalgia & Myofascial Pain Syndrom. I feel that there is enough evidence to suggest that this disease process is directly related to the assimalation of food into our bodies. I feel more research needs to be done to determine if it is a malabsorption by the body or if it stems from our modern food supply being tainted with additives and pesticide use. Please know that this and other autoimmune diseases are on the rise. I suggest that this, like other "new" diseases of the 90(s) (ie. ADD in children) is due to our food consumption. Let's not ignore the relationship between nutrition and disease any longer.
  31. I would like to add three names to the petition for Fibromyalgia and Myofacial Pain Syndrome. I have been diagnosed with Fibromyalgia and my mom and sister also suffer as well as all three of us having the Myofacial Pain Syndrome (undiagnosed because medical profession is not knowledgeable). Florida
  32. I've suffered from fibromyalgia for 5 years since an auto accident. I also have 3 herniated disks 4-5c 5-6c has been fused and 4-5L and degenerate disk in 3 areas the dr. says was caused by the auto accident He also says so is the fibromyalgia words can't explain what my life is like. I have been fighting disability they say im not disabled for the first 3 years i never got over 2 hours of sleep at one time .we all need help PLEASE. my life isnt worth living NE
  33. Nous sommes favorables entièrement avec le contenu et la démarche entreprise pour la reconnaissance du handicap que subisse les gens affligés de Fibromyalgie. Cette reconnaissance devrait aussi s'appliquer pour les gens atteints du Diabète de Type I communément appelé, Diabète Juvénile. Cette mention vaut d'autant plus pour les diabétiques insulino-dépendants affectés par cette maladie ici en cause, la Fibromyalgie. Faisons tout pour avoir légitimement gain de cause dans ces dossiers !

Adapté pour une pétition par Louise Rochette Louise
Email: LouiseRochette@gmail.com