From the article: Find a Support Group for Fibromyalgia or Chronic Fatigue Syndrome
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
