1. Hi Louise, No doc yet but I did receive a phone call from Senator Dukes office her personal assistant Prudence has Fibromyalgia. She said there is some major legistation reguarding pain management that they are trying to get passed. So please tell everyone can we do have a friend. It would be nice for some others to email them. To show support. I was told to let them know if I can't get a good doc this week. She gave me her doctors name and number to call. I have written to every Senator as of last night. Couldn't sleep as usual. Glad I didn't now. Take care .
  2. I have suffered from Fibromyalgia for over 20 years. Have just recently got some pain relief through a neurologist in the form of Oxycotin 2 x a day. Gentle hugs
  3. I have one of those very intense, long-term cases and have been suffering GREATLY for over 15 years (I am 39 now)....the usual LONG, horrendous, story...and I was only finally diagnosed a couple years ago. Suicidal thoughts were part of the process but so far I have hung on and survived. I am presently disabled after a LONG STRUGGLE to try and maintain being employed; being part of society; and leading some type of normal life. I have almost none now. I have lost most of my friends along the way and was forced into UNWANTED isolation. I have been unable to even CONSIDER having children though I'd like to very much. The only positive point so far is I was one of the LUCKY ones who found a husband who is very sympathetic, supportive, and angelically patient!! Dr. Starlanyl's book's have been the most helpful, supportive, intelligent information out there- and almost a lifesaver (I am still working on getting through them)! Also, for me so far, deep therapy body work (massage and tender and trigger point therapies) has been one of the MOST VITAL components of treatment....to get any relief and improvement in my condition. The kinds of therapies that are hardest to get covered by insurance seems to be the only helpful things out there!! And unfortunately, they NEED to be given long term and of course this is one of the biggest struggles with insurance as well (Again, I am lucky....at least I have insurance!).
  4. it is a SIN...(NO exaggeration)...that doctors- of all disciplines - are not being taught the trigger point manuals and the symptomology! It is an OUTRAGE that we are told "it's all in our heads"- when there IS information available that IS valid and explains so many "weird" pain and physiological symptoms. I didn't learn until recently that I am NOT CRAZY! it is HORRENDOUS that most physicians (and many therapists as well) do not LISTEN to their patient's. It is unbelievable how many doctors I had gone to that bearly even touched me before they pronounced some negative judgement. Some decided even as I WALKED IN THE DOOR (also NO exaggeration)! How do you feel abnormal knots and bands in the muscles; skin and tissue (even breasts) as hard as rock; see screwed up balance and gait, if you don't even TOUCH the patient or understand basic mechanics? My therapists are amazed because they've now SEEN it. I AM the trigger point manual!!! I am learning from them and they are learning from me (thank God). I am now seeing the charts in front of me and find the pains and symptoms I experience are VALIDATED...and so far they are in total concert with my condition! I am now finally learning what a MESS I (and others) have made FIGHTING this for so long in the wrong way...and I am now learning HOW to get improvement in my condition with the HELP of the trigger point information. I hope to one day have EVEN A DAY off from pain!! I hope one day I can help someone else with what I am learning. I hope I'll soon have enough energy to help more directly in the political/advocacy/awareness raising arena. THANKS SO MUCH for listening and BLESS you all out there who are carrying on the struggle of getting the support we need and getting the information out here!! VERY SINCERELY New Jersey
  5. Thank you so much for your compassion,,,and information,,,you are invaluable,,to all those who have this disease,,,I also have a friend who has this but does not have email,,,i will gladly get as many signatures as i can,,, If i am not mistaken ,,,one of my sisters also suffered greatly with this,,,and committed suicide,,,' She died on Sept 19, 1998,,,I will do what ever ican to help. I suffer from a work related injury,,,due to my former employer,,who fired me 2 DAYS BEFORE CHRISTMAS 1998, due to the fact that i am ermanently disabled,,i continue to have severe to massive pain,, I was hurt at work on August 19, 1994, My former employer sat on benefits and treatments ,,At first it was finally determined that I suffered a tramatic tear in the right intercostal area,,,as well as a tear in the ligament of my spine that attatched my ribs to my spine,,, If this story which i can write more about can help others,,i will gladly send the entire story to you,,, update: yesterday, February 23, 1999 , I was diagnosed along with other injuries ,,,with Fibromyalgia, I agree with your story,,,,,and your cause,,Maybe my sister would not have killed herself,,if she had the help also, but she too didnt get the help she desparately needed. Keep fighting!!!!!!!! you have my support 100 % !!! Let me know what else i can do, and may God bless you forever for your faithfulness in this cause,,,I was feeling so upset until i found your site and another like it, THANK YOU!!!
  6. I, am signing the petition to the government to recognize fibromyalgia as a real chronic illness with lifelong pain greater than rheumatoid arthritis with all the disabilities that resent themselves with the syndrome. Sincerely, With no particular place to go!
  7. I have this illness and want more doctors to learn about it and have some research to find out the cause of this illness. Please!!!!!!! North Carolina
  8. This or these related illnesses have become so political and have gotten away from what in just plainly "humane" for the people suffering from them. Each person needs individual evaluation and treatment, which is not being done due to restrictions by insurance companies. Much more testing should be done on these patients to stabalize their own paticular version of the illness. Doctors can not do this without the complete support of the gov't. and gov't. agencies. Insurance companies DO NOT CARE ABOUT HOW WE HAVE TO LIVE OUR LIVES---they only care about saving money. The only reason we do not get this individual evaluation which would be more through is because of the cost. AS of now---the treatment is a "hit or miss" type of drug experimentation. WE are not specimins for drug companies. Many of the drug we are put on are not for long term use, even though that is exactly what is being done---without the patients knowledge. It is very easy for those of use suffering from these illnesses to get up to date information on research because of the many organizations that have devoted their time to sending it to us via eamil. It is scientific research, not just some idea thought up at a coffee table by people suffering from these illnesses. But unless these finding are made more readily available to doctors in general---they do not go looking for them. The "wish" to believe that this is all rooted in emotional problems,,which make their jobs and responsibility toward those of us as patients not as meaningfull to them. Another big factor-----it is said "we won't die of this". I beg to differ. WE won't die in the way as a patient with a clear proven terminal illness, but we will not live a long or full life. It will be a slow "invisible" death ,,, never acknowledged as "cause of death lack of treatment due to FMs, CFS, Gulf War Syndrome, ect.". The problem, as I see it, is all about money. Each person with these illnesses needs individual testing to see what is going wrong in "their" body. This is not cost effective. Therfore, we are not important as a group of bright, very insightfull people who just happen to have an illness that is not fatal. THIS IS WRONG AND INHUMANE. Those who have no idea, first hand, of what it is like to live with someone with these illnesses or even be a co-worker ((that is if you are allowed to keep your job---which isn't often)) have NO IDEA what it truly does to the ill patient and their family, friends, and co-workers. In my case, FMS was actually brought on through the medical treatment I have received in a HMO. This I can prove. But there is nothing I can do about it. It would be my 15 minutes of fame to be able to sit in front of politicians who really want information and tell them how this happened. I moved to PA in the late 80's a healthy person and then entered a HMO. After problems with allergies, bladder infections, and TMJ problems--------I ended up with FMS. EXcept for the multiple surgeries on the TMJ ,,,the other medical problems were always taken care of with a prescription because it was cheaper then sending me to a specialist to get to the root cause of my allergies. The many TMJ surgeries pushed me over the edge---the follow-up care was horrible. I lost a LOT of weight while the primary care physicain watch and did and said nothing. I was sent back to work one week after having both sides of my face cut open to correct the TMJ--which never should have been done. I needed time to heal and time to be able to "eat" again. After this major surgery it is a good couple of months before you can eat solid food again. Being sent back to work after one week made it impossible for me to get the intake of food that I needed and the rest to recover---I believed in my doctors but I truly made a mistake. Now I can not believe in any doctors associated with HMO's because they have their own agenda,,,,they expect to make X amount of money since they spent eight years, at least, of their lives studying to have "DR" put in front of their name and they are not going to let a HMO system interfer with their goal. Occasionally, you will find a DR who will take the time and try to do the right things, but that doctor will get penalized by the HMO. Politicians--------tell me how you can let this go on. HMO's came about due to greed in the medical world. Now they are the ones filled with greed. It's already a proven fact that if you have a heart condition and you have a HMO you are more likely to die. This is the country of the finest medical facilities, doctors, ect---but only a very small portion of our society is allowed the priviledge of getting truly fair and good treatment. Employers are certainly going to shop around for what is cheapest for them to offer their employees. Their bottom line is their stock price. Twenty years ago, this did not exist. In trying to improve the medical system by making them accountable for what they charged a total mess has been created. Doctors are not going to take pay cuts, they will cut the care they give and the same with hospitals. Once gov't intervened whenever mothers who just gave birth were being sent home the next day because "little defenceless babies made good headlines", plus it WAS the right thing to do. But mostly it occurred because "it made good headlines". Some very serious time and thought needs to go into what is going on in this country with healthcare. I don't know when it will happen. Either the gov't will make improvements or lawyers will finds ways to win cases against HMO's, doctors, hospitals and this will bring about change. It make since to take care of this very serious problem through the gov't and not through law suits. Wonder if nayone will ever read this. If you do feel free to respond to: Elizabeth Shirk I have done my homework for three years on all these illnesses and now many of us with them know more about what is going on then almost any doctors in the country except a very kind handfull who really care to do the investigation----but usually they suffer from it themselves and have access to research being done on themselves in depth. They get better----why don't we, the public, deserve the same respect?????????????????????????????????????????????????????????????? Our we truly a society where only the very rich can get the best of healthcare?? I think so---healthcare if not our right, like freedom of speach, but somebody should start thinking it should be so that we can be a more productive society. PLEASE LISTEN AND HELP US.................................................................... again PA
  9. J'appuie la pétition pour faire reconnaître la fibromyalgie. C'est pas vrai que c'est dans la tête.
  10. I'm writing to sign your fibromyalgia petition. I am a victim of fms and suffer pain daily. I've gotten to the point now that I don't feel comfortable going to the doctor any more to ask for a change in medications. I feel like an inconvenience. Help is needed and understanding is so very important. Bless you for your believing in your wife and being there for her. My husband is there for me too, but I don't like to let him know of the pain all the time either as he has rhemitoid arthritis and is in pain a lot too. Lucky for him, there is medication to help him go through days occassionally with feeling no pain. My prayer is that I along with every other fibromyalgia patient will experience more pain free days soon!
  11. I'm a person with fibromyalgia. iIt's effecting my entire life. I need help & support. someone to understand how hard it is.
  12. Thank you for contacting me. I will go to your web site and check it out. FMS is the silent illness that is not recognized by physicians, family and the sufferer themselves. So many of us live in a world of unrecognized pain with no one to relate to. Finding a way to become recognized and to relieve suffering should be a priority for all of us. Unfortunately, the medical profession is now taking the stand that they have been too soft on us and we are to tough it out. If they are too sympathetic, we do less and suffer more. I do wish I could remember the article where I found this information. I was horrified as it was in a medical journal or from a medical conference. Can you imagine...being too sympathetic....even my physician is taking the new stance. He does not discuss the FM any more and the most that I can get for pain relief is a NSAID which does absolutely nothing. I do not like medication and basically refuse to take all but the essentials.. but sometimes it would be nice to just have something that would take care of those days when the world is just agony.
  13. Received your e-mail and went to your site. I am signing the petition and it is a very good thing. Thank you for sending this to me. Hope the rest of your weekend goes well,
  14. Je suis atteinte de cette terrible maladie depuis l'âge de 26 ans j'en ai maintenant 39, déjà 13 ans, j'ai des rechutes régulières et ca empoisonne ma vie. Je travaille à temps plein et je manque souvent du travail à cause de ma fibromyalgie. Je prends des elavils, morgesic, et ce matin mon médecin m'a prescrit du zoloft en plus pour m'aider. Si vous pouvez faire avancer la recherche, je serais vraiment ravie car avoir mal partout ce n'est pas une vie, mes douleurs et mes muscles endolories sont du bassin au cou et me donnent mal aux jambes Svp faites avancer la recherche car je suis une femme qui est bien fatiguée de souffrir dans un corps rempli de douleur musculaire. Chicoutimi
  15. Please accept this as my signing the petetion. I support this all the way. Doctors are not educated enough about FMS. In fact the doctor I work for said when he sees FMS on a new patient's chart he just wants to though his hands up and go in the room and tell them to get a life. I asked him why. He seem to think that all FMS people are lazy and do not want to take care of themselves. I said does that include me? "I am at work every day with a great deal of pain, I guess I do not understand why you but everyone in the same group." I felt like he thought people made this up. I can assure you I do not want to feel this way and it hurts sooooooo bad when people and doctors take such a ligth view of my disease. I just would like for some of these people to live in my body for just one week and then I bet they would sing a different tune!! Sign Me Up!

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