Papercut and colored pencil art by Sheryl Aronson X 5

Wednesday, March 6, 2013

Fibromyalgia Organizations

Within the past five days, I found out about the demise of one Fibromyalgia organization and about the existence of another one that I did not know about. Since some of you out there in Readersville share this lovely malady with me, I thought I would share this info with you. First, I got a postcard from the Fibromyalgia Network that due to deteriorating health of Kristin Thorson, the editor, they are closing up shop. They have been in existence for 25 years, providing information and support for people with Fibromyalgia.
Their website, http://www.fmnetnews.com   has lots of information about fibro, about coping, and a good number of links to other helpful sites. Kristin dedicated her life to searching out and reading research regarding Fibro, and published it, along with helpful tips, etc., in a quarterly newsletter. I will miss reading it, and I wish Kristin all the best in her coping and quest for healing.
The organization I just learned about- today, as a matter of fact- is the National Fibromyalgia and Chronic Pain Association (NFMCPA).  Their subtitle is A Global Community for Support, Advocacy, Education and Research.  I have just begun to explore this website, but it appears that there is quite a bit there to explore. One area I find especially of interest is a long listing of research projects looking for participants. I have been involved with 3 projects so far, and encourage everyone to get involved. The only way they will learn more about our illnesses and how to treat them is if they do research, and that requires people with these illnesses to participate. The website has a long listing of overlapping conditions (I checked, Sjogren's Syndrome is listed). They also publish a magazine 6 times per year, called Fibromyalgia and Chronic Pain Life.  You can read it online for $2.00 an issue, but I chose to get a print subscription, because I find it easier to read. You can get the print version for $6.95, which includes access to the digital version, as well as a monthly newsletter, and email alerts.
I know there are other Fibro related organizations and websites, but these two have been tossed into my radar this week. If anyone has a Fibro or pain related org. or site they would like to recommend, post a comment, and I will check it out.

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