TÉMOIGNAGES

  1. I've never taken the time to sign a petition, start a petition or done much of anything that might get the attention of someone or something, whether it be a big corperation or whatever to help make a change in the way things have been done. But I must insist that something be done to help those of us who suffer miserably from fibromyalgia. I was hit with it severly and at a rapid pace after a surgeon who removed my gallbladder and nicked my liver. He knew that I had seepage from that nicked area on my liver but decided to close my incision anyway. My liver ruptured and for three days I laid at home and almost died. Finally after 7 and I repeat 7 rejections of pleas for help from this surgeon, I was fotunate enough that my husband got me to a different hospital were they saved my life. I was so badly filled with infection that I had peritonitis, and they had to leave my incision open so that I could heal from the inside out. Shortly after that I began to feel and experience all these unusual systoms... first of which was paralysis in my arms at night that would awaken me from sleep in a paniced state. I have not had a decent night's sleep in I don't know how long. I'm so fatiged all the time that I can't trust myself to drive any distances for fear that I will "nod-out" while driving. I've become so dependent upon a cane because my knees buckle. My entire body is affected and around my surgical site I have such extreme pain. On a daily basis there's not one part of my body that's not affected. So please, please, please, do the right thing and do the right thing. We need more research. More education. Anything that can be done should be done to help those of us who are strictened with this horrible dibilitating disorder. I'm only 44 years old and I feel like I'm104,...I wonder how much longer can I go on with no hope in sight. This is a real problem, a real disorder, a real disease that needs to be honestly addressed. Even though I have it worst than most it doesn't make their disorder less important than mine. We live in the greatest country in the world, the richest one to I might add, so again please, please, please help us. Sincerely,
  2. We need help with this strange, horrifying disorder. It is really more than a disorder or syndrome--it is an eternity. It is something you wake up with, go through the day with and try to sleep through the night with. It is almost a death, only it's worst- because you feel you can't handle the pain anymore and you can't bear the tiredness, the feelings of total confusion and despair. You life is just the same as being over because you are unable to carry on the day to day things you use to do. It is so painful, you don't even know which part of your body hurts the most. And the misunderstanding you get from those around you makes it even worse. Long term disability insurance that I had been paying on 10 years will not even cover me, I have had to drop my medical insurance because I am unable to work, I am a single mother of 5 children and 2 grand-children (3 children at home) and my days are very hard. I am about to lose everything I worked for my whole life because I have no other resources. I have applied for SSI but nothing at this time. Where do we turn with this?
  3. I was diagnosed with fibromyalgia in Sept 1996, but had suffered with this disease since a motor vehicle accident in which we were rear-ended while stopped at a red light in 1989. At that time I was a communications supervisor with a small police dept and very good at my job. I continued to expand my career in law enforcement, until 1994 when I was forced to quit my job as chief records clerk, 911 liason, warrant clerk, communications supervisor with a midsized sheriff's dept. I had begun to miss to much work and it was hard for my bosses to find a replacement for me at a moment's notice. I went an additional 2 years while my doctor tried to figure out what was wrong and during this time the fibro fogs and the stuttering began making my life a living hell on earth. My husband and my doctor both began to think that I had become addicted to pain medication after I had thyroid surgery in 1995. Finally while in the hospital for intractable headaches in 1996 all the pieces came together and we finally had a diagnoses. Since then it has been a learning experience for both my family, my doctor and myself. Please recognize this disease for what it is. I have been taking Celebrex for the last two months and it has given me my life back. I have had one flare in that time and I was able to function through it. This medication has given me back my life.
  4. Je signe cette pétition avec beaaucoup d'espoir! Je suis victime de la fibromyalgie depuis déjà 4 ans, et je suis mère seule de 4 enfants âgés entre 7 et 15 ans. J'espère que cette maladie sera officiellement reconnue!! Bonne journée à tous ceux et celles qui vivent la même chose que moi...
  5. Je suis très intéressée par ce que vous proposez dans votre association. A quelque part, je m'y retrouve tout à fait en lisant votre document sur la FM, et, je partage votre opinion. Je me sens soulagée de vous connaître. C'est mon médecin psychiatre, établi en Valais/Suisse, qui m'a ouvert les portes de votre association aujourd'hui même en me transmettant les coordonnées concernant votre site Internet. J'aurais bien aimé signer votre pétition, seulement je suis citoyenne helvétique et apparamment il n'existe pas encore, à ma connaissance, un tel engagement et une telle mobilisation en faveur de l'information et d'une prise de conscience du public et du corps médical. Votre prise de position en faveur d'une reconnaissance et d'une prise en compte de la Fibromyalgie de la part des assurances sociales me paraît prioritaire. Beaucoup de patients atteints par cette maladie doivent effectivement faire face à des difficultés d'ordre économiques insurmontables générant un stress supplémentaire qui agrave leur états douloureux et psychologiques. Certains patients n'ont même pas la possibilité (difficultés financières en raison d'un arrêt de travail ou manque de temps en cas d'impossibilité d'obtenir un arrêt ou une diminution du temps de travail de la part de leur médecin) de s'offrir les thérapies pouvant améliorer leur état de santé et leurs souffrances. Je fais partie de ces personnes qui parfois se trouvent au bord du désespoir et je peux vous affirmer que je ne suis pas la seule. Dès l'or, connaissant votre prise de position, votre engagement, votre soutien et votre dynamisme en faveur des FM,je me permets de vous demander si vous pourriez m'indiquer,si, à votre connaissance, il existe en Suisse une association, un organisme ou un groupement, oeuvrant dans le même sens que votre association et qui serait en relation avec vous. Je vous remercie infiniment de toutes les informations et l'aide que vous nous apportez et vous félicite pour votre précieux travail. Meilleures salutations ! A Bientôt j'espère!
  6. I agree with you regarding the petition. I have costochondritis/fibromyalgia/myofacitis/arthralgia after an injury in 1993. This disease has almost destoyed me and I have decided to fight back and am tired of being pushed around. Today, the Mayor of Salinas made a proclamation to declare today, National Fibromyalgia Awareness Day, and was very pleased. It is hard to find the support groups that want to be active in finding a cure. I don`t want to pity myself I want to get better,as well I am sure you do,too. It is hard when you feel like you are fighting the battle by yourself. I was pleased to see your petition, but a little reluctant. Please keep me nformed of anything that comes up and let me know what I can do to help, if I am able.
  7. I was diagnosed with FMA 8 years ago, and have continued to experience worsening symptoms, having to take an indefinite leave from a respiratory therapy position 12/97.
  8. Two months ago, I almost lost my mother to suicide, because she couldn't live with the pain. She's been in a psyciatric hospital since, and she's not getting any better. Last night she was admitted in the intense care unit for chest pain, because she was overmedicated on the weekend. Since she got sick a few years ago, and she had an insurance coverage with the London Life, she was denied because they dont recognize this disease. She also has coverage for a new car to cover the payments if she would get sick but again she was denied. And her latest attempt the Ontario Disability denied again she is on appeal and its the same for CCP. Now she is in a deep depression she diabetic etc... I would like to learn more about this disease, so I could help my mom and people like her. (my neighbor's been trying to get CCP for years and she always denied )
  9. I will sign this petition. This is long overdue and from someone who has suffered with this disease many years it doesn't get any better it gets physically and mentally worse. I understand why people would commit suicide with this disease. Anything is better than living.
  10. Petitions are good, but without recognition or representation in Washington, I'm afraid he will continue to go on suffering in silence....This is a good first step, but there will have to be more mobilized AND have representation in Washington....If we could find a Represenative or a Congressperson who has a family member or close friend who is suffering from Fibro, that would help enormously....Think about the "Gray Panthers" who eventually became AARP..I don't know if I want to donate my brain, I'm only 50 and not thinking of dying now....I did years ago when I believe I first manifested my fibromyalgia....I still have flares and bouts, but I'd much rather live for the good times and not dwell on the present hurtings, confusion and pain....Without sounding smuggle or denergrating, I'd rather see a support group that upbuilds rather than dwelling on a life lived less than "normal".....As for people going the Kervokian route, that I can't agree with unless they are truly terminal....Maybe because I have a great Rheumotologist who has been nothing but encouraging and helpful towards me, that's why I feel this way..... I say take charge of your fibromyalgia and don't let it take charge of you....Let's write our collective represenatives in congress to find out if anyone of them will take up our cause....Statistically there should be someone who know's someone with fibromyalgia in Congress or the Senate....As soon as my computer is fully fuctional again (hopefully with a new hard drive installed this weekend), I can sign the petition AND write my Congressmen and Senators....Let's make the year 2000 a better one for us....I am forwarding this petition regarding National Fibromyalgia Awareness Day for you to read and sign if you wish. I hope you will support me and my fellow Fibromyalgiacs in getting this ignored illness recognized. More research is desperately needed and public awareness will help make this possible. Thank you.
  11. This is very important to me. I have suffered from Chronic Fatigue Immune Dysfunction Syndrome/Fibromyalgia/Myalgic Encephamyelitis for 14 + years. I have been unable to work even part time during the formative years of my life. My life has been destroyed by this/these diseases, and our government chooses to ignore us even though the pain and the exhaustion and the cognitive symptoms have drained my life from me. I am not as sharp as I once was (our IQ's have been demonstrated to drop- most peoples' stay the same or go up in lifetimes), I suffer excrutiating pain throughout my body that is unrelieved by even the strongest narcotics, and I sleep maybe 2 -3 real hours per week, making my emotional life very difficult indeed. I have been an advocate for cfids- I want to sue the government because they ignore us. I have started a drive for us to donate our brains upon death to researchers like Dr. Goldstein who believe that ultimately, something is wrong with our brains that is causing havoc throughout our bodies. I have not one body system that has not been affected by this. Many of you see me use the bathroom too frequently for a young person- FMS symptoms. Many of you have watched me drop out of school repeatedly- I have become clinically unable to read at times and have been dyslexic for short periods in my 20's, and the rigors of school have been too much on my body. I no longer see normally- everything is too bright, too loud- for 14+ years. I throw up several times weekly. I am now suffering extreme arthritic pain for which I have been on 24 mg. of prednisone- enough to melt your bones, because my pain is so bad, and they cannot for sure pin it down to anything but maybe the fms. I have suffered in silence when no one would listen or believe that I was really sick. I was told I was "manic depressive," "slept too much," "hypochondriac"- I have been yelled at by doctors because antibiotics did not work in my body because at the time I had a cdt4/cdt8 immune system profile that looked like an AIDS patient's, and because I still currently have an extremely abnormally low natural killer cell activity, the cells that kill cancer cells that are always growing in our bodies. I have suffered in ways you will never, ever know because I was too ashamed to tell you because people kept telling me this was "all in my head." Please click on this website and add your signature for me. Do this for the 5 people I know last year with fms/cfids/m.e. who killed themselves because the pain was too much and their doctors told them it was all in their heads. I have wanted to die because of this, more than anyone can know. 3 of us nationwide have already been "treated" by Dr. Kervorkian. 25-50 years ago, MS was known as the "faker's illness." Please don't let another year go by with my devastating illness considered today's "hysteria" or "faker's illness." Print out this website and have everyone you know sign it TODAY before another minute of our suffering goes by. Please help. NY.
  12. Having had Fibromyalgia myself for more than 6 years,  I am ecstatic to finally see this disease being taken seriously.  I to have had Doctors, Family, and Friends say that they think "it's all in my head".  Please hear our plea for mercy!  We are in significant pain both physically and emotionally.  We need Fibromyalgia to get recognized!
  13. FÉLICITATION   Pour le site de la fibro et tout ce qui contient il y a beaucoup de travail la dedans super cool ,je sais le temps y es aussi mais ne lâche pas ,moi je demeure à Les Cèdres au sud -ouest de Mlt.et si je peut faire quelque chose fais le moi savoir , cela me ferais un plaisir de me sentir utile pour le groupe et encore merci .
  14. Hi, I too am a person suffering from FMS and CFIDS. I have had this dibilitating for over 5 years. Because of FMS I have been unable to work or even preform the simplist of household duties. Alot of times it makes you feel totally useless. Constant pain that never goes away. Of course I am on many different medications, Paxil,Flexeral,Ultram,Indocin... all of this and the pain is still there. Nothing takes the pain away, the meds. help very little.  More research needs to be done about this disease, and doctors need to realize that patients are not faking the disorder, nor is it all in their head. I too have been told that by doctors, that and " you will have to learn to live with it", Yeah right!! Easy for them to say!! I could go on and on about this disease, but I'll stop here. Hopefully this petition wil help make it so people with FMS can get help as others do with dibilitating diseases.
  15. j'ai ça aussi, dommage que dans ce cas, cela ne se partage pas, je crois plus que cela se multiplie. Merci de faire ce que vous faites. J'ai l'impression que quelqu'un  sait ce que j'ai et que j'existe encore.
  16. I am a 34 year old mother of 4 young boys who has fibromyalgia. I am hoping for greater awareness, and knowledge on the whys and whats of this disease. Signing this Petition in hopes for more awareness and knowledge of what it really is and what are it's causes.
  17. I would like to sign the Petition for Fibromyalgia Awareness Day. Since I was diagnosed 2 years ago, I have found "some relief". Before that time, the medical community made an embarrassment of me and the medical condition that I was suffering. I wish that on no one . Fortunately, I had a loving and devoted wife that understood my situation and stood by me. I am a 41 year old male and according to the Rheumatologist, it is his opinion that I have had this condition for 8-10 years. Good luck.
  18. merci pour toute tes traductions sa me donne beaucoup d'information sur la fibro m"aide a tenir le coup a garder l'espoir bravo!!!!!!tout ton travail aide beaucoups de gens
  19. I just found your letter on Internet and the description you made about fibromyalgie is very realist. I was diagnostic last friday & I'm not sure I'm direct correctly, so if maybe it is possible for you to give me more informations, please come back to me. Oh! I'm sorry maybe my english is not so well. Feel free and confortable if you can not write to me. I will not have problem with this.
  20. Thanks so much for the information, how true it is.  If only those that think there isn't anything wrong with us had to walk a mile in our shoes for one bad day, I don't think we would have any problems with the disability problems we all encounter.  Please keep in touch.
  21. Top of the afternoon!   My name is Stormy and I am 46 years old.  I have Myofascial Pain Syndrome and a serious form of Degenerative Disk Disease of the Spine, plus Hepatitis C.  I also have a herniated disk at T7-T8, which is pressing on my spinal cord- (slowly causing paralysis, dropfoot and bladder problems).    Right now they can only control the symptoms, but surgery on the herniated disk is in the near future.  There are no guarantees with this surgery, (without it, I will eventually be paralyzed).  Even with that... I will still have the MPS/Fibromyalgia and a crippling disease of the spine- (my disks are slowly just wasting away to almost a powder).   I was fortunate enough to find a wonderful doctor, familiar with this disease, at a Pain Clinic in Anchorage, Alaska.  I suffered for many years, went to so many doctors who did not have the knowledge... therefore could not find anything wrong with me.  After finally getting completely frustrating and tired of slowly wasting away, I started doing my own research and educating myself.  Then I researched the specialists- to find someone who would listen, understand what I was going through, and offer what relief he could.  It's hard enough to slowly find yourself becoming disabled, and for a long time not understanding why... and have so many doctors tell you- "Oh, it's just another viral or flu bug, sinus infection, stress or perhaps it's in your head".   After two years of going through that, and taking enough antibiotics to kill a horse... I told these MD's that I was not going to play their game anymore.  This is when I decided:  it is my life, my body- I've lived in it long enough to know that something is seriously wrong... and it was time for "ME" to take charge: by that I mean, educate myself, (which is an on-going process each day), and then find the right doctor to work with me- in my efforts to try to have as normal a life as I can, control the pain, and not treat me as an inferior- or just another # on a chart.   I joined the "Fibromyalgia/Myofascial Pain" Network, which is a wonderful source of information.  But, I would love to hear from others who have this disease and perhaps, we can exchange information, education, or just communicate with someone who "REALLY" understands what living with this- is all about.   My email is:  stormy@mtaonline.net  I also have a "Hepatitis C" support group, and anyone with this disease can also contact me.   Hope to hear from you soon, and pass my email address to anyone who might be interested.  Take care and most important..."Keep a Positive Attitude"!  My feelings are that if faced with any obstacle, or disease- remaining positive, (which can be very hard, when you feel like cr-p!)- is one of the most important factors.  When we loose hope... we have already been beaten!  This is the one thing that kept me going when I found out 3 years ago that I had Hepatitis C, with stage 3 liver disease- and was on Interferon injections for 2 years.  I have alot on my plate alone... but when I start to feel sorry for myself- "I just say, Hey- it can always be worse", and I think of others who have serious diseases, or children with cancer- who haven't even had a chance at life yet... but they always seem to have a smile for you!   Cool Runnings,   Stormy
  22. The Government has not handled this issue in any way that I can say has been beneficial. We NEED to be able to research what we already know, not wasting money and time to 'prove' it (Fibromyalgia) exists. I know this sounds repetitive because that is what this petition is all about but it seems to be closed. I have had fibro for about 18 years and I'm only 30. Maybe some of this info (my name, age, Country etc) can be used for another positive purpose.
  23. Bonjour Louise, j'ai 35 ans... A la lecture de ton texte, j'ai éclaté en sanglots... C'est mon histoire que j'ai lu à travers ces lignes...Une triste histoire qui a commencé à la petite enfance à la suite d'une encéphalite vaccinale à 5ans... Depuis ce temps, je ne me souviens pas d'une seule journée où je n'ai ressenti aucune douleur, ni malaise... Pourtant, j'essayais de fonctionner comme tout le monde... Mais depuis 2 ans, à la suite d'un zona à  la tête, ma vie est devenue un véritable enfer....  En dépit de tous les médecins et spécialistes que j'ai vu jusqu'à présent, personne n'a été en mesure de diagnostiquer la cause de mes douleurs et de mes dysfonctionnements de toutes sortes (digestif, hormonal etc...) ... Durant le jour, je suis incapable de fonctionner, je ressens des douleurs musculaires généralisées et j'arrive à peine à m'alimenter car les muscles de mon système digestif ne semblent plus répondre aux commandes de mon cerveau... Les douleurs inflammatoires touchent l'ensemble de mes muscles et ma colonne vertébrale est, quant à elle, de plus en plus rigide comme l'ont constaté bon nombre de chiropraticiens et ostéopathes...  Malgré l'essai de traitements divers (chiro, ostéopathie, acupuncture etc...), mon état n'a cessé de se détériorer au point où l'on a dut me retirer dernièrement les 2 dernières côtes flottantes à droite de la colonne pour cause de calcification (ostéome)  En dépit de l'opération, rien n'a changé....  Mon cas fait dorénavant l'objet d'une véritable  contreverse auprès des médecins qui me classent dans toutes sortes de syndromes  mais toujours sans diagnostic précis... Certains médecins m'ont conseillé de voir un ''psy'' après m'avoir fait prendre toutes sortes de médicaments (antidépresseurs, anxiolytiques, anticonvulsivants, relaxants musculaires  etc...) sans succès... En fait, le seul médicament qui a stabilisé mon métabolisme en réglant à la fois  mes problèmes digestifs et hormonaux ainsi que mes douleurs musculaires fut 10 mg de  cortisone par jour pendant 2 mois. Durant cette période, ma condition s'est nettement améliorée et j'ai pu reprendre espoir...  Toutefois le médecin qui avait consenti à cette prescription a refusé  de la renouveler faute de  diagnostic...Depuis lors, mes douleurs musculaires ainsi que mes problèmes digestifs et hormonaux sont réapparus (hypoglycémie, aménorrhée etc) Pour sa part, le chirurgien qui m'a opéré m'a confié qu'il avait vu des cas similaires au mien et qu'il s'agissait de personnes souffrant de  fibromyalgie, une maladie auto-immune. J'en ai parlé à des médecins mais  de toute évidence,  on ne me prend plus au sérieux... Isolée de ma famille et de mes amis, je suis devenue une véritable loque humaine... Aujourd'hui, ma vie est synonyme de souffrance et de désespoir... Que me reste-il à faire d'autre que...        A l'aide...
  24. Anne-Sophie a été diagnostiquée une deuxième fois par le DR MEIGNIER du centre anti douleur de Nantes( clinique BRETECHE). Le DR cité suit d'autres enfants jeunes atteints de fibro. Nous avons rencontré SANDRINE 9 ans, trés touchée et sa maman qui souffre depuis longtepms. Anne-Sophie a eu les antalgiques par voie veineuse ( TOPALGIC: Morphine) puis par voie orale. Elle en prend trois par jour associés à un quart de comprimé d'anti dépresseur Déroxat. Elle revit. Elle vient de fêter ses 7 ans et depuis 15 jours, " vit". Elle saute, court, fait du vélo et a une la médaille de meilleure volonté d'effort en natation à l'école. Elle n'a plus ses fortes douleurs dans les cuisses, les maux de tête sont brefs et les spasmes vésicaux sont moins nombreux. on a même l'impression qu'elle se fatigue moins vite. Par contre, elle perd quand même l'équilibre en faisant du vélo et trébuche facilement. Un copain a marché sur son pied, elle a eu mal toute la journée aux orteils et ce n'est pas du cinéma. Enfin , nous avonsd fini le parcours du combattant à la recherche d'un diagnostic qui a été tout de suite évident pour le docteur. En sa présence, Anne-SOPHIE a mis les points gâchettes sur une planche de dessin ( !!!) , il l'a précisé dans ses courriers à nos médecins locaux. De temps en temps, elle a mal au menton. Nous lisons régulierement vos messages et nous essayerons le colustrum si les douleurs réaparaissent violemment. Le DR a dit qu'il n'y a pas d'accoutumance à la morphine. bonsoir à tous la maman de la petite puce....
  25. I would like to thank you for the information on fms and Dr.Starlanyl. It is good to know there is help out there and people who care. Thank you
  26. Just would like to say my husband has this diease.  I have seen a man go from a man climbing the ropes with one of the top grocery chains in this country. the last 5 years he has become totally disable by this disease.  He have the time dose not even know who I am.  And can not even get up out of bed. He dose not have the abilty anymore to be able to take care of himself. This disease not only distroys that persons life.  But the life of his family.Thank you for your time.
  27. Please recognize this diease for what it truly is! A painful debilitating, and depressing diease. This really needs to be recognized by the disability community. I work but I'm not sure how I get through it some days. Please help fibro patients, if you had it you would recognize it for what it truly is! I wouldn't wish this on my worst enemy! I would make a deal with the devil for just one day of relief from pain I want my old life back, where I could function like a normal human being. I have counted out the pills I believe would take my life, but I'm scared I fail at that and be left in a worse condition! As if that were possible........  Sincerely
  28. We really need more research done.I agree no money should go to doctors of research that think this is in our head,or that it is depression.We that suffer from fibro,know that it is not.Many are committing suicide because they can not receive meds.that will give them pain relief.This must be changed and quickly.Research has proven that when you are really suffering from pain and are not medicating to the point of feeling no pain,you DO NOT BECOME ADDICTED.You may need strong meds.as the years go on,because of tolerence build up,but this is not the same as been an addict.  
  29. forever aware of my pain.  I am an individual as normal as the rest of the world!  Treat me as such!
  30. recognize it for what it truly is! I wouldn't wish this on my worst enemy! I would make a deal with the devil for just one day of relief from pain I want my old life back, where I could function like a normal human being. I have counted out the pills I believe would take my life, but I'm scared I fail at that and be left in a worse condition! As if that were possible........  Sincerely We really need more research done.I agree no money should go to doctors of research that think this is in our mind.
  31. Je suis très heureuse de signer cette pétition,qui je l'espère sera prise en considération.Il serait temps que les médecins comprennent que nous ne souffrons pas toutes de dépression et que ces douleurs ne sont pas imaginaires. Merci
  32. DEAR LOUISE   I CRIED WHEN I READ YOUR LETTER .......I KNOW FIBROMYALGIA VERY, VERY WELL......I HAVE HAD IT A LONG TIME AND HAD TO GIVE UP MY JOB AFTER 20 YEARS BECAUSE THE DOCTORS DID NOT UNDERSTAND WHAT I WAS TELLING THEM AND THEY TOLD ME I COULD WORK AND MY BODY TOLD ME I COULD NOT.....MY BIRTHDAY IS 8/17/38.....I HAVE 4 WONDERFUL CHILDREN AND9 WONDERFUL GRANDCHILDREN......I WOULD JUST LOVE TO ATTEND MORE OF THEIR ACTIVITIES BUT,FIBRO REALLY DOES NOT ALLOW IT...........
  33. Félicitation pour ton site, je souffre de Fibromyalgie depuis trois ans je ne peux plus travailler pendant les deux premières années j'ai écrit écrit, même avec les douleurs qui m'envahissaient et j'ai fait un livre qui m'a beaucoup aider.Par contre je signe cette pétition avec coeur en espérant dans un avenir rapproché que les médecins nous prendrons au sérieux et feront avancer les recherches.
  34. J'appui pour qu'il y est plus de recherche et de reconnaissance de la fibromyalgie car j'en souffre et on ne la reconnait pas et je n'ai rien pour m'aider.
  35. I am 64 years, female and I have a very disabling fibromyalgia.  I first knew it's pain and spasm at age 5.  My entire life has been very abnormal.
  36. I would like to sign my name to your petition against pain! I am a FMS suffer and wish to help in any way I can, no one should have to suffer as we do, it is horrible! Lets make the world see and understand as best we can.
  37. I have had this syndrome for over 20 years, and just learned in the past two, what it is.   I have been grossly undertreated for my pain and symptoms.     My family, my ex-husband and my doctors in general have believed that I was crazy, a hypochondriac, or both.  I have not been able to work in over 18 years.  Please help me and others with this devastating, life-destroying disease, before we, too, decide to take "the Kevorkian Road".
  38. I very much appreciate your website and all the info on chronic pain disease. We are a four generation family with Fibromyalgia and I suspect the line of illness goes way back further. Pity those who never had a name or acceptance of Fibro as my horribl first 45 years of suffering was this secret hell. Now we ARE REAL. I still resent Doctors who ignore our symptoms so we are still quite isolated but maybe our day will come...
  39. I GREATLY PETITION AGAINST CHRONIC PAIN. I DEAL WITH IT EVERYDAY. I DISAGREE ABOUT ON THE STATEMENT PEOPLE MAKE THAT FIBROMYALGIA IS NON-PROGRESSIVE. THAT STATEMENT IS FALSE. I HAVE BEEN HAVING FMS FOR 13 YEARS, BUT HAVE PROGRESSED OVER THE LAST 5 YEARS. NOW I HURT (A LOT) EVERYDAY. I AM SO TIRED OF PAIN..
  40. Je me joins avec un grand plaisir à votre chaîne humaine des fibromyalgiques afin que ce syndrome soit reconnu et que nous soyons enfin entendus mais surtout compris. Je souffre de la fibromyalgie depuis des années, le diagnostic a été prononcé en 1993 suite à un long processus de rencontres médicales plus décevantes les unes que les autres. Je vous félicite pour votre initiative d'un site internet français sur ce syndrome, je sais que vous y avez mis beaucoup de temps mais aussi plein d'énergie. En attendant que cette démarche porte fruit, le plus tôt possible j'espère, je vous souhaite bonne chance et bon courage! (du Québec)
  41. Ayant à vivre avec la fibromyalgie tous les jours, je ne peux que me réjouir de pouvoir signer cette pétition. Ce syndrome est très invalidant. Il est grand temps que les gouvernements, les médecins et les compagnies d'assurances reconnaissent qu'il y a différents degrés d'affectation de cette maladie. Quand la fibromyalgie est diagnostiquée comme étant sévère, il est impossible de continuer un travail rémunérateur. S'il y avait plus de compréhension, peut-être que les personnes atteintes pourraient reprendre avec le temps un peu plus d'autonomie sociale et financière. Nier un fait réel, c'est faire l'autruche devant ce que l'on ne connaìt pas. C'est ce qui se passe présentement dans le monde médical. Il y a des physiciens et des rhumatologues qui sont payés par des compagnies d'assurance afin de contredire un diagnostic de fibromyalgie. Qu'est-ce que ces médecins ont fait de leur code d'éthique? Aider financièrement des compagnies d'assurance ou la Régie des Rentes au détriment de la douleur physique et morale des patients, c'est quasiment TUER des malades!!! Il faut que la médecine revienne à ce qu'elle doit être, c'est-à-dire soulager la douleur des personnes!!!
  42. Bonjour!  je désire signer la pétition  sur la fibromyalgie.souffrant moi-même de la fibromyalgie depuis plusieurs année,mais cela fait deux ans que je sui traité pour cette maladie. Les médecins croyaient que J'étais atteins de la scléros en plaque.  C`est avec plaisir que je soutiens votre pétition.
  43. Merci pour les articles.... C'est très apprécié car on se sent bien seule avec cette maladie....
  44. je suis declarer invalide par le medecin de l'expertisede la régie des rentes un raiglement or cour j'ai fais ma demande 1993 Jai du suspendre la procédure 3 ans a cause de quelques problemes tecnique et repri en 1996 je fu refuser  et revenu en1999 pour etre enfin accepter tout cela pour dire qu'il faut toujour percévérer une grande victoire pour la fribro et pour nous  touts granby repender la bonne nouvelle
  45. I wish to add my name to the petition to increase awareness of the intense pain caused by having fibromyalgia.  I was diagnosed with FM about 10 years ago, although I think I've had it for much longer, as I have been taking a lot of aspirin or acetominaphen for about 20 years.  I am unable to work because the pain is too intense, and if I take adequate pain medication, I am unable to concentrate on even "easy" tasks.  I was a legal secretary for nine years and had to quit when the symptoms from the FM got to the point where I used all my sick days in the first three months of every year, and got docked thereafter.  I ended up actually losing money from working, as all of my expenses, especially medical, had to be put on my credit card.  The pension fund that I accumulated on that job was converted into an IRA, and I had to withdraw $8,000 of it under the disability provision to pay it down so my family would not be burdened with the debt.  That was in 1996. As it is, Social Security has denied my claim and my credit card is back up over $5,000 because I can't afford prescription insurance, yet I need the medication, so we charge it.  This causes me great despair, as I am being supported by my mother's pension and we are getting poorer and further in debt by the month.  I have an attorney who has asked me to see physicians who will work with him to continue my Social Security claim.  We cannot afford any doctor's visits, so I am unable to comply. In the meantime, the plumbing in our house is over 50 years old, and we don't even have a flushable toilet.  My 78-year-old mother has to pour buckets of water down the stool and use a plunger every time someone goes to the bathroom.  The water pump is near collapse and taking a shower takes 3 times longer than it should because we have to shut the water off and wait from 5 to 7 minutes for the pump to shut off before we can turn the water back on, otherwise the pump will quit and we cannot afford to have it fixed.  I would like us to have 20th century plumbing before the 21st century, but that doesn't look as if it is going to happen. Recently, UPS "lost" my shipment of pain medication and it didn't arrive until 3 days after I had used up all of the pain medication.  Even taking over 15 extra-strength acetominaphen a day and 2 or 3 times as much Ultram (left over from another prescription) as recommended didn't make the torture bearable, and the stress it put me under for those 3 days left me sick for a week.  I wouldn't wish that pain on my worst enemy. I would so appreciate if Congress took this illness seriously and would allow the Social Security Administration to include fibromyalgia on its list of disabilities.  Maybe then our lives would get back to something resembling normal, and my elderly mother would no longer have to aggravate her arthritis by plunging the toilet several times every day.
  46. I am signing this petition because for the last 10 years I have suffered from chronic pain, which as of this date, my physician believes is a result of fibromyalgia/myofascial pain syndrome. Although, he doesn't really know how to treat it, at least he gave me something to start researching myself. I am suffering needlessly because of the lack of expertise or willingness to admit that these conditions can be so debilitating. My pain is so bad that I can't concentrate at work and I have no quality of life.  I am sick of being sick and doctors treating me like I am some kind of hypochondriac. I beg of the medical profession to open their eyes and really help people like myself.
  47. I've had it 9 years. I was a superisor at Bell Atlantic.  After, 24 years i had to take a long term disability and fighting for social security. It limits my walking. Ihad too much pain, sleepness nights, fibro fog.  This is a very depressing .  I can no longer clean my house or do grocery shopping, etc. Please help this be recognized and be accepted. Thank you
  48. I ahve had FM for 9 year Lost my job due to it. And have been denied 3 times with SS.  Tried going to work part time and could not do the work. We all look healthy but we are not.  I walk now at times with a cane and can not even change the linen on my bed. Simple chores have become major work for me and others.
  49. Je suis du Québec.  J'ai été diagnostiquée fibromyalgique depuis près de huit ans mais je sais que j'en souffre depuis plus de dix ans.  Mes douleurs ont commencé sur des endroits très spécifiques mais, avec les années, non seulement je ressens beaucoup de douleurs aux points spécifiques, mais aussi, je ressens des brûlures partout dans le corps.  Je n'ai pas vraiment de répit; toutes les nuits se suivent et se ressemblent. Les douleurs ressenties durant le jour diffèrent un peu d'un jour à l'autre, la fatigue aussi sans toutefois qu"elles me laissent tranquille. J'ai eu beau essayer la physiothérapie, l'acupuncture, ... il n'y a que la massothérapie qui m'a légèrement soulagée.  On m'a fait essayer depuis dix ans des infiltrations de cortisone, des anti-inflammatoires de toutes sortes (pendant trois ans) qui ne menaient à rien; j'ai l'impression que la médecine n'est pas beaucoup plus avancée.  Il faudrait beaucoup plus de programmes de recherches..........  Je me dis qu'une opération au coeur (qui représente une période difficile mais temporaire) ou un cancer (celui qui présente un haut taux de réussite) est plus facile à accepter, même si le spectre de la mort est présent. Car la maladie chronique, ce n'est pas évident à supporter, surtout lorsque ça dure depuis des années et qu'il n'y a pas espoir d'en sortir un jour; de plus, il est très difficile pour les personnes non atteintes de comprendre vraiment ce qui se passe en nous; il faut leur pardonner car même plusieurs professionnels de la santé ne le comprennent pas non plus.  On ne veut pas passer pour des paresseux, alors on fait bien des petits gestes (comme transporter des paquets) qui nous donnent de la douleur mais on les fait quand même.  J'ai quand même compris qu'il fallait que je pense un peu à moi et je me repose de temps en temps. Merci pour la diffusion de cette information et pour l'énergie que vous mettez à cette pétition.

 

 





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