Fibromyalgia?
Does anyone know of good organizations that are working towards research and coping? What about research that is being done? What are your FM stories? No whiners please...I was diagnosed with FM 3 years ago, and I can't seem to find any activism going on towards finding relief/cures for this illness...every support group ends up being a bunch of people who can't stop complaining. I suffer from this debilitating illness just as much as the next person, but don't want to complain...I want to hear about success stories, treatments, people doing something to advance public education and get more research performed....this illness has progressed quietly long enough and it is time to get it out there in the public eye, like AIDS, MS, cancer...even asthma and arthritis have more public education and understanding. Anyone feel the same?
Public Comments
1. relax you sound as if you have cancer. try to find a good physical therapist. try this sight www. fibroandfatigue.com. or mail me any question you may have patsakir@yahoo.gr2. This clinic might be helpful
http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/
3. It was one of the many things I got before all the pieces of Acromegaly were put together. My pain has moved to my bones now.I learned I had to take it easy when my body hurt and spend the time reading good books on the heating pads. a friend of mine read a book. Everything you want to know about Fibromyalgia. She is now taking daily doses of a cough drug and using all natural foods and make up and says it has really helped. I wake up everyday and thank God I woke up and thank him I can walk, talk, see, hear, etc.
I have seen Jacob Teitelbaum, MD on good TV health shows and People say he really understands and has a lot of people say they have been cured. He has a book and Fibromyalgia & Fatigue Centers. https://www.endfatigue.com/home.nsf
4. I was diagnosed about 10 years ago and I, like you, am not the complaining type of FMS person. So what if I have a disease that shall influence me all the days of my life?! At least I am not terminal. It is all in the attitude. I simply cope. On those days when I cannot lift both arms to wash my hair in the shower, I have learned to brace on elbow on the wall and place my head near the hand sticking out. Then I only have to lift and hold up one arm. It seems contortionary, but it works!
As far as the other end of your question, I know of no active legislation to advance the knowledge of FMS. I just changed doctors, quite frankly, because my last one was convinced it wasn't a true medical condition. He thought I was depressed. Give me a break- I am the lady who smiles and laughs all the time, and tries to make life a bit better for everyone. Depressed my arse! I do my own education for those in my world. If all sufferers do this, wham! We have community education based on personal experiences. What a concept.
