1. I have suffered from FMS/TMJ for over four years. I had to quit my job as I could no longer keep up with my work, not knowing at the time what was wrong with me. I am a classic example of one who spent several thousand dollars on medical expenses and the end result was FMS. I have not even tried for disibility. I have not had the energy to put up with the long term "fight" one must go through. I managed a business and made good money, so it has been hard living on one income. I think something has to be done to help people with FMS/MPS to be able to file for disibility and have a valid claim. It is sad that FMS patients have to go through so much in order to receive disibility, if they are lucky enough to get it. The depression one goes through not being to work when they are willing but unable to do so, as their body just can't keep up,is only compounded by the lack of some not understanding nor willing to realize this is a valid and recognized illness and should not be limited when disibility claims are filed. Can you imagine living with a constant ear ache and jaw/facial pain for over a year? I go to the dentist. He refers me to a specialist, they in turn do a root canal, no help, then they do another....several thousand dollars to these Dr's....also my family Dr. has sent me to a specialist for ear and throat. Yes, many more tests done. One begins to think "one" may be crazy, as all these tests and no relief! Finally a year and a half later my family Dr. refers me to the Rhemutologist. I was fortunate that he finally put a name to ALL my problems! I was "not" crazy!!! It is what they call a syndrome and yet there are so many people who suffer from this. We all have the "trigger points" and when one sets off, it's like a chain reaction. Try living with the worst case of flu you have ever had, except for the actual cold, imagine living with this on and on. It is easy to see how this us up for depression. I think FMS people have a high tolerance for pain, you have to, there is no way out of it, except to accept it and learn to live with it. However, living with the pain from day to day wears you down, it is no wonder why depression sets in. You read of so many trying for SSI and the rejection is almost 100% for these claims. I just don't have the energy to try. Do I deserve it, yes! There are many more out there most likely worse off than I am and they have been turned down. Why? I still haven't figured out why FMS isn't acknowledged as "valid." It is time something is done about this! There are too many people that have these symptoms for it not to be "valid." I have lived my life the best I could. I have givien to the community. I have worked and paid taxes. I have never asked for anything. I still haven't put in for disibility. I know I would be turned down. It's a shame that one lives their life working hard and is just a "common" everyday person, no one special, just an average person and yet feels they would be rejected if they filed a disibility claim. Lets work at funding more research on this "syndrome." There has to be more to it if so many people suffer, I just can't image that it is "all in our head" when there is so many suffering from the same symptoms. There is so much I could go on and on, but then it has all been heard before by many others......you see, we all suffer and each to a different degree. There is so much more to this and it is time that it is recognized and more done to help.

  2. I am 43 years old. I have lived with pain (growing in intensity) for over 20 years now. I was diagnosed with fibromyalgia approx. 3 years ago. Since that time, I have been on every anti-inflammatory med there is. Aside from tearing up my stomach,,,they have done nothing for pain. I finally found a Dr. that treated my fibromyalgia for what it was. A VERY PAINFUL DISEASE!!!! I have been given proper pain med to help live with the pain. I now go to a pain management clinic. The meds.that help me are narcotics. This of course,,,raises red flags to the government. Why? It is available and is the only thing that alleviates some of the pain. (I will never be pain free) I also have a twin sister that has this disease. It is time the government took this disease seriously! If you spent half as much time researching and acknowledging this disease, as you do researching who and what drs. are associated with narcotic pain meds, we just may have some answers. As of today's date,,,,,we know this to be untrue. We have no answers. We have only a government responsible for thousands of victims of fibromyalgia suffering needlessly. Some of these victims have committed suicide. What is it going to take people???? Help we that suffer from this disabling disease. Find us some answers to our questions. STOP making us suffer needlessly.
  3. As I sign, I am barely able to sit up in a chair. I was just diagnosed two weeks ago, though I have suffered for years. The pain continues to increase, only temporarirly relieved by streching and exercise (when I am able to do so). I use pyhsical therapy and anti depressants. It began years ago for me as fatigue, and attention deficit problems. Then increased to specific pain areas. The intensity varies, but never ends. I have 5 children. A few of them also have pain. One is Autistic. All have attention deficit.
  4. I too suffer from fibro and was diagnosed in oct of 97. it has totally changed my life. i pray that people, esp., those with the power to make laws and change the outlook on this condition will begin to recognize the validity of our pain and suffering
  5. Nous sommes parents d'une fille de 7 ans souffrant tous les jours de troubles à rapprocher de la fibromyalgie ( et trouble neuro-végétatif: spasmes vésicaux douloureux). Un médecin a examiné les points gâchettes et à déclaré que si Anne-Sophie était adulte, il pourrait confirmer le diagnostic de fibro. Nous souhaitons communiquer avec des parents qui ont des enfants touchés par ce syndrome. Merci beaucoup. Nous voulons entrer en contact avec des parents qui ont ou pensent avoir des enfants fibromyalgiques. Est-ce possible. merci de réponse même si c'est négatif. Avons besoin d'établir des contacts. MEILLEURES SALUTATIONS marc.waltriny@wanadoo.fr
  6. Hello. Thank you for sharing your story with me. I have found I am not alone. I can not beleive their are so many people effected with this disease. I got up some courage to write how I feel for the first time. please read my letter. Do I sound pathetic?? I have always felt embarresed to feel so sick. Did you ever feel that way?/I am on 100mg of Amitriptyline at bedtime( I find I have several bedtimes because I can only sleep a few hours at a time) I also take Naproxen(375mg) 3 times a day and alot of advil.. I have been on many medications for the last 12 years. So many I can not remember them. 2 years ago I had a feeding tube put in because I could no longer keep any thing down. I was being followed be the private investagators for the state of mass. I feel like I have to always fight to make people understand that even when I am smiling I hurt.
  7. Well thank you again for talking with me. I am very scared. I am suppose to sign my name on the document to settle my case soon. If I sign I will get $70,000. if I dont I have to start the trial all over and prove that I am really disabled. How can you prove this "invisable disease" is real and not in your head to people who only concerned in getting rid of you as fast as they can.
  8. I am writing to you to ask for your support on the issue of Fibromyalgia and CFS. I do not want your pity. I do not blame the world for what I suffer. Please do not feel sorry for me. Just let me tell you my story. My families story. My life. On February 1987, while working at Wrenthem State School for the mentally challenged I was struck in the face with a chair by a Mentally challenged person. I feel no illwill towards this individual. I enjoyed my job. I loved the people there. They were like family. I met my husband there. For last 12 years I have seen doctor after doctor. I was diagnosed with TMJ. I have gone through these years not understanding what was going on with my body. I have been told "it is all in your head" and sent for pyhcactric help. I have had physical therapy, a Tens unit, had mouth guards made, injections into my joints and have been on MANY medications. Last year I had to have a feeding tube put in due to the fact that I could no longer keep any thing down. I was upset that I was being followed by private investigators hired by the state to check to see if I was disabled or not. I understand that is a common procedure. (I since have had the tube removed and am on a liquid and eat soft foods). You can't see my pain. I know it is here and it is not in my head. It is in my body. It takes hold of your soul. The pain does not know your limits. The only way to "see" my pain is to have Fibromyalgia. Then and only then can you fully understand Imagine if you can what it is like to feel as though you are never going to be that person you were 12 years ago. I look in the mirror and see the reflection of some one else. I am to turn 40 years old this July and I feel much older. Each year that passes I see the changes. I feel the changes. I am not the person I was last year or the year before that or the year before that. That most everyday you feel like you have the flu. Your hands ache and burn when you are trying to tie your children's shoes or button their dress or shirt. That when you wake up (not that you really sleep much) you know that once you put your feet down to stand up you will feel this razor sharp pain in your feet and up your legs. Your hips burn and ache. You have to hold on to the wall and banister to come down the stairs. Then a whole new day begins. A day of stiffness, muscle twitches, burning feeling in your shoulders, headaches, dizzy spells and memory loss. It feels like having a paper cut all over. Your skin stings. Your chest aches. Your husband loses days at work because you can no longer take care of yourself. You need help with the beautiful children you brought into your life. The children we adopted, (Two are drug exposed babies and one is a child born to a mildly retarded 16 year old mother) eight years ago are the light of my life. Without the support from family and friends and our 21-year-old daughter and 19 year old son I don't know how we would have made it through these past few years. This illness didn't just happen. The trauma I suffered that day in February caused the domino effect. It has slowly taken over my life. I did not ask for this disease. I had dreams. On April 16th, 1999 at the Fall River office of Workmen compensation I stopped fighting. My lawyer, William Murray represented me. We went before Judge Daniel O'Shea. The State was represented be Terreance Buckley. The Judge began saying how the state does not compensate for "pain and suffering" but what if it is the pain that is keeping you from being that person that you were before. I can not work again. I have my days where I am feeling "normal" if you call not feeling up to par normal. That day in February changed my life. It didn't happen all at once. It took the last 12 years to fall in place. This isn't about winning there are no winners. Or about how much money I was offered to walk away from the States responsibility. To give up the fight because you are told that you have to start the case all over again because this was the 4th Judge to hear the case. You would have to prove you were Totally disabled. If not, you will have to pay the money back. The judge told us a tale of a man that had that happen. So my husband and myself decided to give up. He didn't want me to go through the IMEs again and to have to prove I was disabled because of the accident. We know I am. This is not about how much the state offered so that I would go away. It isn't about money. Money can not bring back the person I was before I was hit in the head with the chair 12 years ago. It is about the disease. FIBROMYALGIA. The "invisible illness". You don't get better. You can have good days or good hours or minutes or seconds but it does not go away. You can be happy and depressed at the same time. You smile and try to hide it. If you get a chance look to look at the "lump sum settlement information pamphlet. Read the section on "What should I consider when determining if I should lump sum my case? You will find questions to ask your self. One is "are you ready to return to work?" NO Do you still have unresolved medical problems resulting from your injury? YES And the one you must consider with all we have gone through is "Will you be able to prove your injury is work-related? Can I? We feel we can but what if the impartial Doctor I go to dose not feel Fibromyalgia is a real illness?? A real disease. Should fight the state of Massachusetts or give up. Hopefully other people that go through what I have will have the support they need The person in my life who has been my soul mate is my husband. He gives me the strength when I do not think I have any. He walks beside me and helps me to stand. He supports me and is my best friend. I love him with all my heart. Without him I would have given up on life years ago.I Thank you for taking the time to read this. I hope that I have given you a better understanding of Fibromayalgia and what it can do to a person and their family. I have my family and friends help me make it through each day. I hope you will support me on May 18th. Remember I am not alone. Fibromalgia and CFS are painful diseases and an unresolved issue. There is no cure. I am new at learning about FMS. I learn more and more and I find more hope by listening to others who have this disease. I understand that there is an estimated 3 million people effected in the USASincerely yours.
  9. My wife has been strictened with this terrible disorder they call fibromyalgia. I've watched in a period of less than 2 years rob her of her energy and enthusiasim of life. It's like she has the flu all the time, and she's so fatigued that she can't do the simplest of things that was never even given her a single thought before. It has taken over her entire body. She might have a couple days of the week where she can at least function mimamally. She use to take such care of her looks, such as putting on her make-up, and getting dressed. But now that seems to be such an effort for her. I love her with all my heart but it breaks my heart to see her in such pain. OK we have a diagnosis but what good is it when there seems to be such a lack of doctors that don't understand it,...or treat you like you've lost your marbles and don't want to hear about this disorder that has no evidence to substanciate a treatment with someone who actually cares and doesn't believe you've gone mad. We need help!!! My wife is not the type of person who would be like this if nothing were actually wrong. I'm demanding that something be done about this disorder. We need research and understanding. We need to know why. We need respect and proper treatment. We're going into the 21st century with so much already, so how about if we add a dedication to those who suffer from this little known disease? Sincerely.

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