Posted by TENA/ DIAMOND on 1/2/2009, 4:31 pm, in reply to "Re: Letter to NY Times #8"
This article starts out with a very true statement, 'Fibromyalgia is a real disease'. To the millions of us that suffer from this disease this is wonderful that this had made the front page of one of the largest papers in the US. The trouble comes when 2 different doctors who do not
understand and because this disease is so different with each patient and has no cure want nothing to do with it. The damage these quotes do is make family members, friends and employers say even more harmful things and verify their own non belief that this is not a real debilitating disease that we have no control over unless we have an understanding, caring and up to date doctor who works with each individual to find what works best for them to gain control over their lives again. At this point we are unable to return to the lives we knew before fibromyalgia hit us but we can have a fulfilling live with less pain. That is in part due to the drug companies like Pfizer who are finding things to help us such as Lyrica. The research continues on a daily basis to find the causes and a cure for this horrible pain filled disease. This is what should be reported about and praised not the thoughts of neanderthal antiquated doctors.
There are millions of people , not just middle aged women, that suffer daily from this disease. People who can longer work and support their families, children who can not get out of bed for school because they are in so much pain. To say this is all in their heads is so demeaning and cruel. I for one would love to be able to have the doctors who were quoted in this article and any others with the same beliefs as these feel my pain for just one day and then look me in the eye and say it is all in my head. I can guarantee you they would not be able to do it. I thank God everyday that I have a wonderful doctor who listens to me and works with me to get this pain under control, but I know I am one of the lucky ones. Fibromyalgia is one of the leading diseases causing insurance rates and disability rate to sky rocket, but yet it is supposedly all in our heads. Think about how that can be then. It can't because it is real and it is dibilatating and it is
costing millions of dollars a year. So I for one say thank you to Pfizer and the other drug companies and researchers for their commitment to finding the causes and hopefully a cure for this disease. S. J. McKee ************ ********* ********* ********* ********* ********* ********* ** I invite the doctors and others who choose to belittle the millions of us who suffer endlessly with chronic pain and related problems, to live in my body for just one week. It would definitely change his tune! Finally, drug companies and others are doing what they can to help Fibromyalgia sufferers , and then this! I am devastated! In my opinion, these doctors are doing the same thing as most rheumatologists. They can�t cure us and the drugs available only help slightly, so they don�t want to be bothered by patients with "imaginary" symptoms. I understand why this is so, how awful to feel so powerless when so many suffer like I do. However, the New York Times
should really check their sources before printing an article that will definitely have a terrible impact on people with Fibromyalgia. This reminds me of "tabloid" writing! I pray that this letter will do a bit toward correcting this blasphemy. Regards, Linda Edwards Raleigh, NC ************ ********* ********* ********* ********* ********* ********* ***** Regarding Alex Berenson's article dated 1/14/08, Drug Approval: Is Disease Real? I suggest sending him, his family, and loved ones to Iraq (NO ENTRY ALLOWED IN THE GREEN ZONE) to increase the likelihood of getting CFIDS, which is recognized by the Center for Disease Control. Maybe then he will sing a different tune and if he comes to Fibromyalgia Centers for treatment, deny him (tell him it is in his head, scans are all normal) for at least 3 years for he must suffer for these comments. Alex could be associated or paid by the Insurance conglomerates for his mouthpiece. This would be nothing new in
America, rather the norm, saddened to say. So Alex, I hope you get FMS/CFIDS quickly!!! Cheers, Anita Thompson
************ ********* ********* ********* ********* ********* ********* ***** I don't know how long I've had fibro, but I was diagnosed in Jan. 2000. It is very discouraging for people to say this disease does not exist and that it is all in my head. I am not on Lyrica and try not to take any opiates. I lost my job in Jan/2000 because I no longer had the energy to work. The only other medical problem I have is Carpal Tunnel. Yes, I was overweight and while trying numerous medications I gained an additional 50 pounds. Thanks to a wonder Dr and team of Physical Therapists and Psychologists I was able to lose 100 pounds 5 years ago without surgery, or medication and I have kept off 95% of the weight. Everyone says how wonderful it is not to work. I have a Handicap Card that I have to use more often than I want. I very rarely travel, but if I do I have to ask for pre-boarding. When people greet me they want to come up and hug me, and I have to step back,
because a hug hurts. Thanks to the weight loss I'm down to a size 10, but I have to wear size 20 Caftans, because I can't stand clothes touching me. I'm always cold which is driving my friends nuts, because they are going through menopause. My joints always hurt and sometimes I can't raise a cup of coffee to my mouth.
I used to be a very intelligent women that memorized manuals and was always available with the answers. I try not to be in discussions today because of Fibro Fog and I sound like an idiot. This is not all in my head. I would gladly return to work. I'm sick of the looks people give me when I get these additional (?benefits?) , because I've learned how to put on makeup and did I mention I have to go the beauty shop twice a week to get my hair washed and blown out because I don't have the energy to blow it dry nor can I keep my arms up long enough. My disease is real, and the name assigned to this monstrosity is Fibromyalgia. Maybe today there isn't a blood test or x-ray to verify I have a disease. It isn't recognized because you can't see it like MS or Cancer. It's not Life Threatening, but it is a Life Sentence to pain. Yes these Drug Companies are coming out with drugs that they feel may "help" the pain, but it isn't finding the source. I'm sorry to say
that until someone popular like Michael ?, with Parkinson's disease has Fibro, enough money will not be spent on Fibromyalgia research. If these Dr's. don't believe in Fibromyalgia, try living with a spouse or child that has it, or talk to another Dr that has, you will change your mind. Barb Elman ************ ********* ********* ********* ********* ********* ********* **
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