Posted by TENA/ DIAMOND on 1/2/2009, 4:28 pm, in reply to "Re: Letter to NY Times #6"
Infuriating. My pain is all too real. It makes me feel so awful that I have to go to bed.because it makes me feel too rotten to stay up. My fatigue is all too real. It strikes when I least expect it, putting a sudden end to housework, day trips, and grocery
shopping. I have documentation from a sleep clinic that I have an EEG anomaly, that I never got past stage 1 sleep during my overnight stay. I have been unable to sleep without medications for five years now. I can't think straight, I have trouble remembering where I'm going, when I'm in the car. I used to work as a nurse; my career is history. There is no way I can care for patients due to my cognitive deficits. I have gone completely broke and am now homeless due the cost of the meds that I desperately need to keep my quality of life at an acceptable level. So I don't care if you call it Fibromyalgia, or something else. Whatever you want to call it, it is all too real, and it has basically destroyed my life. If you "Don't believe in it", I hope it happens to you, for a month. Then it won't matter what you want to call it, but I can assure you, you will call it something. If you "Don't believe in it", you need to set aside your ignorance, and get
educated. There is no excuse for any physician being to lazy too get with the program. If you are caring for patients with this disorder but telling them it doesn't exist, you are committing malpractice. ************ ********* ********* ********* ********* ********* ********* ***** I am outraged and saddened by the Fibromyalgia article. I have had FM for about 6 years. FM is not a fake disease. I went from exercising vigorously everyday since I was young to being able to hardly walk one day. Since that day six years ago, it has gotten progressively worse. I do not have a mental disorder and I am not making this up. I am also not lazy. I am a fighter and each day I fight to do as much as I can. It upsets me that someone can think this is not real. Normal, active people do not just wake up one day and suddenly do not have energy to walk into the supermarket from their cars. They also do not magically lose their memory. I was a public speaker years ago who
could remember 6 minute speeches word for word and now I am lucky if I remember a sentence! It is comments like this that hurt the people with FM. We need people to believe us. We need the healthcare systems to listen to our cries. We have a hard enough time having co-workers or even relatives believe us. We also have a hard enough time getting a tiny percentage of things we need covered by insurance. The last thing we need is some man who is clearly ignorant of the disease to display his feelings on the subject where millions (or more) people can read it. People need to realize what a struggle it is for a person with FM to live. Simple household tasks can leave us exhausted and unable to move for long periods of time. I cannot tell you how damaging this article can be to the FM community. I wish that he were able to feel our pain for just one day....then this would never have been written. Thank you for reading my thoughts on this subject. If you need
anything else feel free to email me. Feel free to post anything I have written. Signed, Jessica Masser 3rd Grade Teacher ************ ********* ********* ********* ********* ********* ********* ***** Mr. Berenson, After your flaming attack on fibromyalgia syndrome diagnosis, I only hope you never find yourself diagnosed with a syndrome. To be labeled a syndrome, a disorder must have a group of common symptoms with no known cause, only some vague predisposing factors. Do you have any idea what fibromyalgia is like? It's like walking around with the flu most days - the severe body aches and malaise. Most otherwise healthy grown adults completely cease to function at the point that they get the flu, yet people like you have the unmitigated gall to suggest that we "obsess over aches that other people simply tolerate." Some doctors have a "God" complex which is why some will not believe in the existence of fibromyalgia - they can't do anything to fix it, so
obviously it must not exist. Ask your average, healthy 40-year-old woman what her pain level is on a particular day, and you'll either get funny looks or a comment about a specific injury that causes occasional pain. Ask someone with fibromyalgia that same question, honestly, and they'll give you a straight answer. For me, it's usually a 5 or 6, but rather than complaining, I soldier on - much like the majority of fibromyalgia patients. Drugs like Lyrica offer hope to a population which has had very little to hope for in the past. It helps to bring a better level of living to those afflicted with this disorder. Who are you to try to take that away from us? You may as well tell a cancer patient that you're not going to give them the drugs to save their lives since we're all dying from the day we're born, anyways. Sincerely Yours, Cathleen Vought Springfield, MO ************ ********* ********* ********* ********* ********* ********* ****
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