fibromyalgia
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Posted by: Jele100 ® 07/30/2003, 09:55:35 Author Profile Mail author

I have suffered from fibromyalgia and chronic undifferiniated autoimmune disease with a positive ra factor for several years. I have tried all kinds of pain medications and have asked my rheumatologist about botox injections. He is having a difficult time finding a doctor here in Arkansas who uses botox for fibromyalgia. Does anyone know of a doctor in AR who does use botox? Thanks and good luck to all.

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Re: fibromyalgia
Re: fibromyalgia -- Jele100		Top of Thread	Archive

Posted by: barbara ® 07/30/2003, 17:15:17 Author Profile Mail author

i have had firo for 4 years now and neever have I heard of Botox being used for pain. Firo's is generally all over in generalized areas and botox is only used for small places. As far as the pain goes I know exactly what y ou mean. Pain medication willl work for only a while and then it doesn't work anymore. My doctor is now getting freaked about prescribing pain meds and now I have to go to a pain clinic. Botox for fibro- I sincerely doubt it.

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Re: fibromyalgia
Re: Re: fibromyalgia -- barbara		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 07/30/2003, 18:12:36 Author Profile Mail author

Even though the pain is generalized many of us have specific spots that are worse and often have big knots in our muscles that really hurt. Mine are at the top of my shoulders. I have received Botox injections there when I was having spasms in neck and pain in shoulders. It did help stop the spasms and gave me relief. My neurologist treats both my BEB and FMS. The Klonopin and Celebrex help both. I get the Botox in my shoulders only when it is really bad.

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Re: fibromyalgia
Re: Re: fibromyalgia -- Delaine Inman in TN		Top of Thread	Archive

Posted by: Ann Doyle ® 08/02/2003, 09:41:08 Author Profile Mail author

One of the men in our local support group has been chosen for DBS surgery. He is very contorted and in a wheel chair and a lot of pain. I know he gets Botox. Ann Doyle

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Re: fibromyalgia
Re: fibromyalgia -- Jele100		Top of Thread	Archive

Posted by: Lynn Yarbrough ® 08/13/2003, 12:31:48 Author Profile Mail author

I just became aware of a very informative article about F'ia that appeared in NewsWeek Magazine on May 18 2003, and I recommend it to anyone who has the condition and to their relatives, friends, and doctors. The article, by Anne Underwood, discusses the origins of the condition and its treatment in great detail. It's on P. 53 of that issue. In a very real sense, suffers from BEB share experiences with sufferers of F'ia: lack of understanding of the pain it causes, lack of knowledge by GP's, inability to do everyday tasks, neurological origin, etc. Perhaps we can learn something from each other. I know that BEB's can learn from the Braille Institute about adaptation and successful living under extreme handicaps. --- Lynn

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Fibromyalgia article
Re: Re: fibromyalgia -- Lynn Yarbrough		Top of Thread	Archive

Posted by: Moderator-JB ® 08/14/2003, 20:00:27 Author Profile Mail author

Thanks Lynn for mentioning the article. My husband has had Fibromyalgia for some years and I'll guarantee you the pain is real. Judy Related link: http://fmaware.org/fminfo/newsweekarticleFP.htm

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Re: Fibromyalgia article
Re: Fibromyalgia article -- Moderator-JB		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 08/18/2003, 22:44:53 Author Profile Mail author

Thanks for that link. I've known in my heart that fibromyalgia was a brain disorder long before doctors started beleiving it. It wasn't accepted as a "real diagnosis" until 1990 and wrongly placed under Arthritis even though it was not a form of arthritis. People in Rhuematoidology and Orthopedics tried to treat it until very recently. I think I had some symptoms all my life, then during my first pregnancy got up one day and couldn't bear weight on one hip and they could find nothing wrong with me. After my second pregnancy I had weird symptoms in my low back that hurt to bend or walk that would come on mysteriously and then leave, it occurred less and less with time, but no one could find anything causing it. I often had epsiodes of creaks in my neck sometimes all the way to the shoulder blades and it would move from one side to the other. Finally in 1991 the soreness in my neck, hips and shoulders never went away and the fatigue became a problem. Now it is all over my body, but moves around and is worse in some areas. In the early 90's the docs just said I needed to do exercises to build my muscles and when I'd try, I'd get worse. I was diagnosed in 1992 and found I had to exercise, but not like I had been told.....very gently and slowly but regularly and to listen to my body. Massage helped and gentle stretches and walking. I could fall asleep but would wake and not be able to go back to sleep. That is why I took the 10 to 20mg of Elavil to help me sleep and to decrease the pain and soreness. I will always believe the FMS and the BEB are coming from the same part of the brain and are related neurological disorders.

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Re: Botox for pain - I had it.
Re: fibromyalgia -- Jele100		Top of Thread	Archive

Posted by: denise mckew ® 08/14/2003, 14:30:30 Author Profile Mail author

Hi, I did have botox for pain once. I have chronic myofascial pain that is basically all over the right side of my head face neck etc. the shots were given to reduce the headaches and the tension. However, because they injected the neck muscles that run from behind your ear to your chest, the muscles in the back of my neck over loaded and flared, and I suffered with that for weeks. I also suffered with the flu-like symptoms. I would not do it again for pain. They just can't inject all the muscles that can flare up. I also have a friend who has been suffering with fibro for about 10 years now. She had botox also, and had the same experience as I did. Please think carefully about botox for pain - especially fibro where one muscle being paralyzed can set off a chain reaction. Take care, Denise

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