Posted by TENA/ DIAMOND on 1/2/2009, 4:24 pm, in reply to "Re: Letter to NY Times #4"
mr. alex berenson.... God did not put u on this earth to judge us (fibro sufferers). i kindly ask u to not critize me and any of the other human beings suffering
w/this horrible disease. if u have never experienced this malady i am so happy for u!! but please don't criticize any of us unless u have walked in our shoes. deal? in 1988 my internist blew it off as arthritis. wonder what he thinks of it now? just hold ur tongue (or fingers in this case) until u r a little more familiar with it. it can really knock u on ur tush sometimes!! off to bed u go, armed with rx's u have been given to help and it takes time to get thru that. oh....heating pads and electric blankets also help bunches. thank u so much for taking the time to read this and other letters in re: to fibro take care, be safe and don't get too cold!! u can always come to phoenix for R&R bring ur family and enjoy our winter. have a wonderful and blessed week. yours truly....... ......... .judi rhodes ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ** Hi, I am 57 yrs old and have been living with
chronic pain since I was 21. All the Drs. I saw insisted that there was something wrong, but couldn't say what. I was told I had everything in the book but could be helped by no one at all. Finally I found a rheumotologist in NYC who said I had non-specific vasculitis, even though a biopsy turned out negative. At Mt. Sinai hosp in NY the interns drew the spots where my paid was with marker-trying to understand where and why it was there. I was treated me with steroids (which did no good) and other very dangerous medications like cytoxin and immuran. Nothing helped. The only thing that gave me any relief was plasma Pherisis (a blood transference procedure) that I went through every 2 weeks for 8 yrs. At one point in time I was on 125 mgs on prednisone (because I was told it would keep the disease from getting worse and effecting my organs) and percocet around the clock with no relief at all.
A chance in climate helped immensely and I was able to get off most of the paid medication I was on, but the condition kept getting worse. I developed IBS (probably from all the pain medication) and Chronic fatigue (which may or may not be from living with chronic pain for so many years) In the 90�s I was finally diagnosed with fibromyalgia. I finally had a name and some camaraderie with others who for years had no idea what was wrong with them. But the public wasn�t convinced. My eldest son was in college at the time and mentioned it to his fitness teacher who insisted it was a disease of laziness and exercise would cure me. I wonder if you have any idea how much it hurts when your 18 yr old is convinced your making yourself sick because you�re lazy? Now this article has stated fm doesn�t exist� How much more do we with this disease have to put up with from the medical professionals who are supposed to help us? Mar ************
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To whom it may concern, In August of 2001, I had been diagnosed with numerous health issues one of which was Fibromyalgia. The constant debilitating pain effectively ended my working career at the ripe old age of forty-one. After reading the article in the New York Times titled "Drug Approved. Is Disease Real?", I became outraged by Dr. Frederick Wolfe's statements that I immediately wondered who pressured or paid him to recant his earlier diagnostic guidelines associated with Fibromyalgia. Could it be the health insurance companies not wishing to pay claims of the millions suffering from the disease? Did Dr. Wolfe considered the possibility that depression, social anxiety and the economic anxiety that comes from losing ones ability to earn a living are by-products of the disease rather than the cause? His words are spoken like any other who has never had the displeasure of living with this sort of pain. How much pain does this man consider normal?
How can he deny the disease or a biological cause when brain scans show differences in the way Fibromyalgia sufferers process pain? Why would our brains process pain differently if there was no such cause or disease? I agree there is a certain amount of pain and discomfort associated with the natural aging process, but the constant varying degrees of pain that I have to live with on a daily basis goes far beyond anything considered normal at any age. It is not normal to be in so much pain that you can't sleep, lie, sit, stand or perform daily activities without hurting. It is not normal to be in so much pain that you can't bare to have clothes or human hands touch your body. And...it is not normal to be in so much pain that it makes one crazy enough to consider the relief that suicide would bring. I wish this man could experience for one year, first hand the pain Fibromyalgia suffers have to endure for a lifetime, then come back and give us his
professional opinion as to whether or not the disease exists. Theresa M. Obrecht Farwell, Michigan
************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ** Concerning the article, everyone is entitled to their own opinion, as close-minded as it seems. As a Christian, I cannot see Jesus, but have no doubt that he is there. Sincerely, Karen L. Reyes 12302 Leetown Road Kearneysville, WV 25430 304.728.8231 Home Tabithascloset. com (Ministry to low income and/or teen mothers ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ** What qualifies Alex Berenson to make such statements? I have been diagnosed with conic fibromyalgia by Arthritis Specialist at our main hospital here in the UK as having 16 out of the 18 points used to assess the medical condition. On one occasion I had a server attack that an ambulance was called to take me to hospital, while in the ambulance I was wired up and the gauges went off the scale while registering my pain. People like Mr
Berenson obviously have a prejudice against people with fibromyalgia, until he fully understands our condition, some good advice would be educate himself about fibromyalgia. Until then, in my opinion Mr Berenson is not qualified to make such statements. David Rogers Coventry UK ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ** To ask "Is this disease real?', is an incredible insult to those individuals for whom the suffering of fibromyalgia is all too real. My 22 year old daughter, a suma cum laude graduate of Boston University has had her life stolen from her by this condition. Every day is a day of pain. We are well aware that the medical community does not yet understand this devastating disorder but it is wrong and cruel to say that which we do not understand is not real. Heaping more pain on individuals who suffer everyday ,by spurious and under researched articles such as this one, is truly
inhumane. Jane A.W.S. Shiyah
************ ********* ********* ********* ********* ********* ********* ***** Many people/Doctors refuse to accept Fibromyalgia as a syndrome. Or even accept its existence at all. I too have tried to refuse to accept it in my life as well. I felt that by giving it a name that only gave it power. It may not be "Fibromyalgia" but something in my body is causing this severe pain and fatigue. When a one time very active human being is suddenly stopped in her tracks and made unable to perform in the work-place or even at home, as she once did. Then we want to know what name you non-believers want to put on it? We don't care what you call it. Just come up with an answer for us. An answer that will finally give us the relief from pain, a good nights sleep and the ability to function as we should be able to in our everyday lives. What's in a name anyway? It gives Doctors that already overflowing waste basket of ills to throw another set of symptoms into.
"Perhaps with a diagnosis they
will be happy and leave me alone." You may have thrown a diagnosis at us, but you also say that there is nothing you can do for us. Well, after all of these years don't you think it's time they researched this problem thoroughly enough to come up with some answers and finally give relief to millions of people who share the same set of symptoms? These symptoms are not manufactured in our minds. We don't want to accept Fibromyalgia. But these symptoms are real and they are interrupting the normal flow of living normal, happy,pain-free lives. If "Fibromyalgia" doesn't exist, then will someone please tell me how to rid myself of this Chronic body-wide pain that has robbed me of a normal life? It's affects have a wide range of negative results. Everywhere from interrupting careers to destroying marriages. I am fortunate to have a very patient husband, but I have seen the destruction this has had on others. This "phantom" non-existing condition is destroying
peoples lives and I
think it's time that someone, somewhere gave these poor people the validity they deserve. Not denied by someone like Alex Berenson who has quite obviously been able to dodge the bullet of chronic pain. Good for you Mr. Berenson, but where is your empathy for those of us who are not as fortunate as you? Wishing you and your family the blessings of a pain-free life, Barbara Brindley Des Moines, Iowa ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* **
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