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Old May 11, 2011, 09:29 AM
fearfulfrog's Avatar
fearfulfrog fearfulfrog is offline
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Member Since: Nov 2007
Location: New Hampshire
Posts: 145
Welcome humantouch. I had a support group locally but it met @ night and I am unable to get there, now there is no group in my area. I tend to rely on FMAWARE website/newsletter to get links to info.

I just got back from the pain clinic, I had to stop my Mobic ( anti-inflamatory) because I was unable to take anything for break-through pain while on it ( like aleve for cramps); With Mobic I was a 3 on a pain scale most days, now I live @ 6. I also had to stop taking Lyrica that I had been on for 3 years- my pdoc felt it was contributing to my negative thoughts. Now I only have a muscle relaxer to help with sleep and can take during the day as long as I don't want to do anything that requires too much thought ( too sedating). I inquired about a longer-acting anti-inflamatory such as Enbrel- but alas, this class of drugs isn't approved for Fibro, so unless I find a study that is being done I can't even try it!!

If anyone wants to help further research- please go to patientslikeme.com; it is a site that gathers information and demographics about people with Fibro; CFS etc; researchers can gather information to send out surveys to people who meet specific critiria so that they can try to find new ways to deal with everything. I get e-mails every so often that ask me to take a short survey, it gives researchers feedback and allows them to get grants to further treatment options. So far I haven't found the "magic" combination for my self, but by continuing to share my story more people become aware and new treatments will come.
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