Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Tammy3164
As many of us do, I've been struggling to find a doctor that wasn't clueless about fibromyalgia, it's been hell. I've read that Neurologists are starting to get involved with diagnosing and treating it over Rheumotologists because they've discovered it's has nothing to do with inflammation or joint issues, it's a something not working correctly in the brain. I did a search for Neurologists in my area and found one that had Fibromyalgia listed as a special interest on his bio page. I called and was able to get an appt the next morning. He must have had a cancellation. It was amazing, he knew and understood Fibromylgia like the back of his hand, he explained things I didn't know even though I been doing lots of reading since I've been diagnosed. He told me that is is also closely related to Migraines, so you need to do what you can to keep them under control even though you may think it's the least of your problems. He told me I need to remove caffeine from my life as they trigger migraines. He also told me that even though I thought I was doing okay with sleep I probably wasn't because Fibro patients seem to not be able to fall into the deep sleep that we all need to function. He gave me some sleeping pills to help me do this. Said I need to also be consistent with when I go to sleep and wake up. Even 1 hour off can make you feel worse in the morning. Gentle exercise is a must daily, 20 minutes of brisk walking and/or light stretching exercises. Never intensive exercise or even taking stairs rather elevators is going to make you worse the next day. He also warned me that their is a lot of wrong info on the internet. He gave me a list of a couple good book and websites that he recommended. If anyone is interested in knowing what they are send me a message. It was such an awesome appt. I feel like there is some hope for me now. If any of you are still looking for a doctor that will listen to you and not have you leaving there crying please check into seeing a Neurologists. He gave me a hand out that he wrote, I am also willing to scan this and send it to any one that's interested. Don't give up there are some good doctors out there.
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I would be interested in knowing what books he recommended. If you could mention them here for everyone that would be great.
The Fibromyalgia Help Book by Jenny Fransen RN and I. Jon Russell MD, Ph.D., Smith House Press. Comprehensive and scientifically accurate with lots of useful references yet easily readable. Dr. Russell is a FMS researcher and editor of the Journal of Musculoskeletal Pain. Jenny Fransen is a nurse clinician with special expertise in FMS>
The Fibromyalgia Survivor my Mark Pellegrino MD< Anadem Press. Lots of valuable practical advice. Dr. Pellegrino, a physiatrist and FMS researcher who himself has FMS, has written several other books about FMS, all good.
I haven't ordered them yet so I can't tell you anything about them.
Thanks for the list of books.