Posted by TENA/ DIAMOND on 1/2/2009, 4:26 pm, in reply to "Re: Letter to NY Times #5"
WHAT'S IN THE NAME? My wife has been diagnosed with Fibromyalgia and I CAN TELL YOU IT' HELL! "The Real Estate Professionals That You Can Count On" Joe and Irene Roman 15702 North Dale Mabry Hwy. Tampa, Florida 33618 (813) 574 6285 ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ** How I wish Mr. Berenson could spend a week in my FMS body with my IBS bowel. I believe he would change his tune rather
quickly! The sad thing is that there is a
modicum of truth in what he says. It is just totally...and deliberately. ..misconstrued. Are there patients with FMS who "obsess over aches that other people simply tolerate", who are encouraged to "think of themselves as sick, and catalog their pain", who are people who "do not adapt", who "tend to cycle among different painkillers. .."? Most assuredly, there are patients such as these. They are unable to deal emotionally or mentally with their health condition, and may become sicker as a result. They would have similar reactions to any diagnosis. But does this describe the majority of FMS sufferers? It most decidedly does not! Would that Mr. Berenson had put his considerable journalistic skills to work actually looking at the work being done by Dr. Clauw and others. With each new research, the ideas I've had for years about what FMS really is are being validated! Since day one, I've said that my pain signals are skewed. Now, it turns out, research says
they truly are! I've
joked about my "fibro fog" and getting old, only to see that brain scans can prove that my brain really does work differently! Had the current research been available 14 years ago when I was first diagnosed, I would have had no need to search for doctors or remedies. What we know today is not perfect, but it gives me great hope! I challenge you, Mr. Alex Berenson: Look at the other side! Mary in California ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* . I HAVE TO SAY FIBRO IS DEFINATELY REAL!!!!!! IT CAN BE A LIVING NIGHTMARE FOR ALOT OF US. IT ANGERS ME SO MUCH EVERYDAY HEARING THAT SOME DR.S THINK IT IS NOT. I AM FORTUNATE TO HAVE A WONDERFUL DR. WHO WORKS WITH ME ON THE MANY PROBLEMS THAT HAVE HIT ME. HOW CAN THIS NOT BE REAL? THEY SAY IMAGINE THE WORST FLU YOU HAVE EVER HAD AND TRY TO LIVE WITH IT EVERYDAY. SOME OF THESE DOCTORS NEED TO DO JUST THAT. FOR A WEEK THEY WOULD BE BELIEVERS. I AM
REALLY UPSET WITH ALL I HAVE BEEN
READING ABOUT THIS. WHEN I WAS FIRST DIAGNOSED I WENT THROUGH ALL THIS AND NOW IT IS STARTING ALL OVER. JUST WHEN I THOUGHT IT WAS ESTABLISHED. I KNOW WHAT I GO THROUGH EVERYDAY AND HAVE TO COPE WITH IS REAL!!!!! JUST TO GET THROUGH ONE DAY IS EXHAUSTING FOR ME. I HOPE THAT ALL OUR WORDS ARE READ. YES WE REALLY LOOK GOOD, DON'T WE??? JENNYE ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* * I want to say that I have had Fibromyalgia for a good many years and they have finally told me what it was in 1997. I have been through every test you can think of and and I still had constant pain. I believe I had this since I was younger in my teens but then I have been in many accidents and falls so it triggered my chronic pains. I have excruciating burning pains to the point that I it feels like 10 torches are lit inside my body and I am on fire. This made me bed ridden for 4 months because even if I got up to
use the washroom I was on fire. I had to stay laying down all the time. I have lost my jobs over the years because i could not go to work,stand up, sit, kneel,squat, lift anything,push, pull, or even smile, yes that is right I could't even have a smile because my face even hurt. I will tell you that I have been on many different pain medications and not one of them has helped me because I have severe multiple chemical sensitivities so I am not able to take many medications due to this and also many have not even helped my pain either. I have tried lyrica "that FDA has approved" I tried this BEFORE it was approved and no it did not work for me. I have had to turn to altenative ways, dietary supplements, herbals, all to help my widespread pain or I have had to deal with it the best I can. There are many drugs out there that do help others , which is great.
But you have to remember that this illness - every one is different on how they preceive pain or how they deal with it. I also would like to say
that I am not 5'4 and overweight, I am 5'10 and my weight goes up and down and that is depending on if I am hungry or not due to the pain that I feel. There is days that I can't eat because I can't move out of bed let alone. You don't have to be overweight to have Fibromyalgia, anyone can get it Women,Men, Teens, and Children. There are MANY doctors and specialists that DON'T believe in Fibro, Chronic Fatigue or even Chronic Pain which I believe they should and why? Because there is reasons why I am in pain and as well as others. Yes I believe that some are probally misdiagnosed but there are many of us that aren't! When I went to a specialist in Duluth MN one of my doctors said that it is now a manditory class that ALL doctors have to take which is about "Fibromyalgia, & Chronic Fatigue" I think this should be all over the USA. Why because this is epidemic and just like all the other illnesses/diseases out there that were epidemics once like
depression,anxiety,
altzheimers, high blood pressure, and etc. Doctors had to take classes on them too and look at all the drugs that have helped all those and you are upset that Lyrica and many others are to be approved for Fibromyalgia? Do you know that docotors don't know exactly why people get high blood pressure? Do you know why your loved ones can't remember your name if they have Dementia/Alzthemier s?
Do you know why people are sad and can't get a grip on their life and that call that many suffer from Depression/BiPolar? You know there is a new illness/disease everyday out there and I am sorry there are many Doctors/Specialists that DO BELIEVE in Fibromyalgia. Fibromyalgia should be reconized in the social sercurity views also. If they can reconize someone with Bipolar/Depression and give them disability (SSI/SSDI) then they should allow Fibromyalgia to be reconized to get the benefits. Is BiPolar a disease? But Doctors will treat them with all sorts of medications and some help and some do not. Same goes for Fibromyalgia some medications help and some do not. I have been told that I can NEVER work again and I have been fighting for my disability for 3 years now, yet I have been told by 4 different specialists and also my M.D. that I can never work again and to keep fighting for my right to my social sercurity because I am one of the ones that they
cannot find any pain medications for to help relieve pain. I am still waiting for my answer from Social Security and my pain is not any better and I still cannot work. Just to let you know EVERYONE with Fibromyalgia is different!! FIBROMYALGIA IS REAL! Lauri Rice Lake, Wi. ************ ********* ********* ********* ********* ********* ********* ********* ********* *********
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