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Don't be led down the so-called garden path!

© Cynthia Webber (Jausten)

When I first was diagnosed with fibromyalgia, I did my own research into this baffling syndrome. After I broke out of my 5 years of denial, I joined a FMS support group in my community, took a 10 week program from the Arthritis Society, and also subscribed to the B.C. Fibromyalgia Society's newsletter. Through the support groups and the newsletter, I gained a vast amount of knowledge.

When I got on-line in January, 1997 the first word that I placed into a search engine was "fibromyalgia". I discovered a newsgroup, and found others who also were struggling with understanding fibromyalgia. I phoned the editor of the B.C. Fibromyalgia Society's newsletter, and she told me of a couple of good web sites to look at to gain even more information. From there, I discovered a FMS chat room, where I met people from all over the world who also had FMS.

Meeting people via a FMS newsgroup, a chat room, and developing my own web site with information, links, and an on-line daily journal of living with FMS, generated a great deal of email for me.

I was suddenly bombarded with email from people giving me medical and alternative ways to "cure" fibromyalgia. Being a nurse, I do not give out medical advice, but I do teach others to do their own research, and then take it to their own physicians. Because I've been blessed with doctors who understand this syndrome, I haven't had the difficulties that some people have had with unbelieving doctors. I have repeatedly stated via email, in my on-line journal, and in the chat room that since no cause for fibromyalgia has been discovered, then there is no cure.

I began to realize that some people only believed in one theory about FMS, and tended to dismiss all other theories. I also discovered that they couldn't quote any double-blind experiments, or recent studies which are being researched by some of the top FMS specialists.

I also received email, read on the message boards, and heard in the chat room about certain vitamins and herbs which would "cure" fibromyalgia. This bothered me because some people who hear about a "cure" will spend any amount of money, travel any distance, and just blindly follow anyone who professes to know the "cure" for FMS.

I also discovered that when I went to my FMS support group, a lot of the people there were doing the same thing, plus there were others, both in the support group and on-line, who whined and complained about their symptoms, and seemed to expect an instant cure. I can whine and complain very well just by myself, but I've learned that it doesn't help me either physically or emotionally.

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