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Readers Respond: Chronic Fatigue Syndrome & Fibromyalgia Support Groups
Responses: 4

By , About.com Guide

Updated September 28, 2009

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Support can be an important part of living with a chronic illness. Share your tips for finding a local chronic fatigue syndrome or fibromyalgia support group or starting a new support group. Also, what has your involvement in support groups, online or in your community, meant to you? Share Your Experience

not always supportive

I attended a support group meeting that is held during the afternoons, so after I got work I was unable to go back. But unfortunately I would not have returned anyways. Often what I've found is that in an attempt to be 'positive,' sometimes other ppl with this illness can get a bit judgmental with others who are having a hard time (newly diagnosed and/or lacking support). When a new member expressed their grief over the losses in their life, he got jumped on and shut down. It's easy to forget that there is a grieving process, and that not everyone has support and will always struggle. They need real solutions, not platitudes and lectures.
—Guest taliba

Proceed with Caution

I find my best support online. I wanted to share my experience about a local "support group." I learned that the person organizing the group had multiple sclerosis, not fibro. She said she wanted to help other people and I felt very touched and thought the sentiment was sincere. When I attended a "health seminar" put on at a local massage school, I was surprised to be sitting and watching a colon cleanse video. Products were passed around the table and there was enthusiastic (planted?) discussion about the benefits of similar products and other natural products. I felt very, very sad. I had come in the hopes of meeting others who were trying to cope with the illness. I felt mislead and frustrated. I believe this was someone who was trying to make a living because the MS might have prevented her from other types of work. In that sense, I feel badly, but I wanted to let other people know what happened. There are also (gimmick) doctors who try to suck people in, in similar ways.
—greybeh

Pain Fatigue

My sympathy to everyone with this malady. I've had it, I feel sure, for over 30 years. I'm now 66. Finally got a diagnosis about 13 years ago. Prior to that my doctor thought I should just have therapy because I was depressed! I have a lot of pain in my legs, the back of my thighs is the worst. In church I cannot stand still due to the pain. I have ringing & itching in my ears. I have stopped taking Zocor for cholesterol and think maybe the muscle pain is slightly better. I know my doctor will not be happy about this choice. The fatigue gets me down more than the pain. My husband doesn't understand at all. He seems to think I should be able to do everything I did when I was 35. I take quite a lot of Rx: Neurontin, Ultracet, Cymbalta, trazadone. I hope some good will come from this new virus information. God bless you all.
—Guest SewJudi

Support Groups

Personally, I love support groups... I've attended several and I started one for the East side of our Valley! I get so much from everyone in the group... caring, sharing, loving people who have a lot on their mind. They are men and women, all ages and at different stages of their syndrome... some have just been diagnosed and others have had Fibromyalgia for 10-20 years. I absolutely recommend going to a support group because it always seems to help to talk about your concerns with someone who REALLY understands. Maybe their spouse 'doesn't quite understand' or they've got a 'wierd' symptom (only to find out that the majority of the people in the group also have that symptom) and find out that it is common for someone with Fibromyalgia. I learn something from the others every time I go to a meeting!
—dkennelly2000

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