What makes a Good Support Group

United States
February 24, 2007 9:00pm CST
I am had Fibromyalgia for 14 years. I am in remission. I would like to start a support group for people who struggle with Fibromyalgia and other diseases that cause chronic pain in my area. I live in Plano TX. I also am the webmaster for www.goodnewsnow.com and I want write an article that will give people who struggle with pain encouragement. May I use your suggestions?
2 people like this
5 responses
• Canada
27 Feb 07
I think one of the things to consider with a support group is to meet someplace where people don't have to contend with stairs, and have a comfortable place to sit. It also helps if there is lots of parking so they don't have any great distance to walk. There's nothing worse that being in pain and having to try and walk any distance or climb stairs. Unfortunately going out on a cold winter's evening is really difficult for me, not just with the fibromyalgia, but also being crippled up with arthritis. The cold often increases the pain, and by evening I'm often struggling with the pain already. It doesn't really matter to me if it's an evening with a speaker or not, it's all how I'm feeling.
@AmbiePam (92789)
• United States
8 Apr 07
Those are good suggestions. Stairs are such a part of life for me, I never really thought of making it possible to NOT have them.
• Philippines
5 Mar 07
hi ruthieonart! i haven't had fibromyalgia, but i admire the cause which you have chosen to embrace at this season in your life. Go ahead and do whatever you can to make positive change to other people who are suffering from fibromyalgia. I guess it would help if you would get yourself affiliated with organizations that have the same concern so that they can spur you on with your goals. Good luck!
1 person likes this
@AmbiePam (92789)
• United States
1 Mar 07
Oh, I wish we had a local fibromyalgia group. We may have one in my city, but I don't know about it. I'm 26 and I struggle with fibromyalgia among other things. I had to get a new doctor in January and when I went and he asked me all my medical conditions, I told him fibromyalgia. He then preceded to tell me it is a fake "disease" (he used air quotes, yes he did) and that my pain was not real. After I left and cried alone in my car, I filed a complaint with the Oklahoma Health Care Authority. I couldn't believe the nerve!
@rx4life (1930)
• United States
1 Mar 07
I'm amazed at how cruel some doctors can be...My friend had a similar incident with the same disease...she encountered 3 different doctors that told her they couldn't treat a disease that was in her head...how absolutely cruel!!!! She now sees a doc that she really likes and is attending support meetings...things are better for her now...I hope you are doing well..I know what it is like to struggle with pain and weird symptoms...I have an auto immune disorder that they can't put a name to...they know what it is doing but seems to be 3 disorders in one!!! What a treat...3 for the pain of 1~~~LOL...I am blessed that at this point it has been manageable...I pray that yours is under control and you are doing well...
@AmbiePam (92789)
• United States
8 Apr 07
Thank you. I'm doing OK. Don't you hate it when no one can put a name on it? I mean, if they just had a name somtimes, that's all I want. Well, that and a cure. I don't ask for much now, do I. : )
• United States
8 Apr 07
When I finally got diagnoised my doctor did not have a name for it , he jokingly called it the Ruth disease. It was a group symptoms. They tagged it Fibryomyalgia for insurance purposes, they need a number. But he and the another doctor I had believed me. It important to have a doctor believe you and treat you. There are doctors who know and will treat you with respect and treat your symptoms even if as of now they don't know as much as they could about your condition.
• Philippines
10 Apr 07
I don't know of any support groups going in my country so I don't have any idea how it is being run. However, I would like to share with you the most effective methods which had helped me greatly in coping with the pains. I was introduced by a friend to food supplements. There are two which I have been taking without fail each day. It is Intra and sodium ascorbate. Know more about Intra at www.lifestyles.net and at www.sodiumascorbate.com about sodium ascorbate. I hope you will give this note some attention. I really want to help people cope with their pains as those friends did to me when they introduced these products into my life.
@rx4life (1930)
• United States
1 Mar 07
Working in a retail pharmacy I encounter many people with this horrible condition...I see them struggle daily with the pain and disabling effects...I also hear their stories of looking for good support in the medical world and in their daily lives... Chronic pain is such a crippler...it can consume a person...I applaud you for trying to help others..there can be nothing worse than suffering daily with a disease that is so misunderstood by both the medical community and the layperson...it is depressing enough to be diagnosed with any disease...but to have one that some people won't even recognize as "real" is devastating..you then have to deal with both the daily pain and suffering and the lack of knowledge and understanding of those less informed...Bless you for wanting to help others...My friends with this condition thrive when surrounded by understanding, love, information and compassion...as do we all....
1 person likes this