Anyone run a support group??

Discussion in 'Fibromyalgia Main Forum' started by nktigger99, Jun 4, 2003.

  1. nktigger99

    nktigger99 New Member

    I am thinking of trying to start up a support group in my area. There is nothing in place as of now but I would love if there was. It would not just be for Fibro but also RA and other things like that. I have a good friend with RA. At this point I am just trying to find out how to go about it. I called the local red cross and they are willing to support it...ie train the volunteers but not with funding we would have to do it ourselves.

    So I plan on E-mailing my dr and the dr's at Landsthul (the big army hospital just down the road)to see if they really think there is a need.

    please give me any input you can think of would help me.

    Nichole
  2. AnnG

    AnnG New Member

    Sorry, I don't. But, one of the FM books I checked out from the library had hints on how to start your own support group. I'm sorry I don't remember which book it was! My suggestion when you Email your doctors is not to ask them if they think there is a need (there is!) but if they would refer patients to your meetings. I would think it would be a big help for them too! If the Red Cross is willing to support you, you are more than halfway there! Do you have a YMCA? They may be willing to let you have a room for free to hold your meetings and then it will cost you nothing! Keep us posted!
  3. nktigger99

    nktigger99 New Member

    Just wanted to add I am overseas in Germany....in a military community.

    Nichole
  4. barny

    barny New Member

    i run my own support group its a lot of hard work getting every think together please read mine to get some idea the add is kerrysfibrohugs@msn.com you can open your own web page with msn ,let me now what you think of the site
    [This Message was Edited on 06/05/2003]
  5. Jen F

    Jen F New Member

    that helps coordinate support groups.

    Maybe Germany or a local area near you has an association or Organization for people with your illness.

    They might have some ideas, suggestions, and/or could take your name and contact you if others call looking for support group.

    I am in a CFS support group and I find it helpful. But it did take me more than 6 months initially to get into one.

    Jen F in canada
  6. tiredTina

    tiredTina New Member

    A friend of mine started a group for IC patients(Interstitial Cystitis), and hospitals let them use a room once a month for free. She arranges for guest speakers, which are mostly dr's and others who treat the disease and others related. They all do it for free as well. They are able to have samples of products, and have a sponsor. I don't know exactly how all this was accomplished, but I know she did a lot of research and a lot of calling. Hope this helps give you some ideas!
    ~Tina~
  7. nktigger99

    nktigger99 New Member

    Thanks you guys for the ideas and support!

    I just sent my dr an E-mail about it and left a message at the Rhemuy clinic for one of the dr's to call me back. I talked to my husband yesterday about it and he thinks it is a great idea. He said that he would be willing to use some of our money to fund it at first.

    My husband asked me what I want the goal of the group to be and I said Information shareing. And also a place to be understood.

    Do you know of any orgs in the states that support groups in the states??

    Nichole
  8. klutzo

    klutzo New Member

    You've gotten a lot of good advice already, but I'd just add that you should protect yourself so you don't burn out. There will inevitably be a small group of very needy people who come to your group who will suck out every ounce of emotional energy you have if you let them. I advise being firm about the fact that you are not going to be anyone's free therapist. You will have to repeat this often, as this sort of person is not sensitive and hinting won't work. If you don't, you may end up much sicker, having to end the group, and with no emotional reserve left at all for yourself or your family and friends. This can take years to rebuild, if ever.
    Been there, done that, got the t-shirt and wore it out,
    Klutzo
  9. Sunshyne1027

    Sunshyne1027 New Member

    I keep thinking about starting a support group for FM people.. but then sometimes hesitate. I thought about starting one through the chuch I am a part of. We have a prayer request board.. and what caught my attention when reading it was that there are at least 10 others within the church that also have FM. Recently found out also.. My aunt has it. Always felt alone with it, in my family, that it wasnt hereditary.. then my sister recently was diagnosed with Lupus.

    I would think it over before starting a support group. Like the previous reply... It takes alot of emotional energy. Its why I am hesitant about starting one. Or maybe have a co-leader of the support group, so to ease off some of the responsibility.

    Sunshyne
  10. nktigger99

    nktigger99 New Member

    I will make sure that I do not put to much into it. I do not want to burn out...I am running on empty most of the time already. I will have a person helping me who has RA...but she moves this coming December. I will be moving back to the states in 2 years...or maybe sooner.

    I would like to get something in place that would contunie even after I move.

    Nichole
  11. kredca4

    kredca4 New Member

    I think that is, such a great idea, and if you follow the KISS Method, you could have a lot of fun, meet new Friends and learn from each other.

    I was asked to start one, but I have been dragging my heel's, only because, of the Meeting Time.
    I'm a Morning person, and most are late in the day people that had signed up. So we found someone to take over that group.
    Ten showed up, at first, then it dropped down to 3 and they called it quits.

    If I do one, it'll be through the Hospital, and they will have to be someone to work with me, it's a big job alone.
    We didn't get to the Speaker's yet, had some lined up, but with only 3 or 4, it wasn't worth it I guess.

    I had put togeather a small info pack, made up of Information I got off the Net.
    Then we just sat and talked, we all complained about the usual's and we cried about what used to be, but I got the feeling that this was a good thing.

    Just not too many folks with these Syndromes, can get out and about, so I for one am glad for this board, it's my Information Highway , lol, and a great way to meet other's who are going through similiar problems.

    I hope that this works out for you. How long will you be there? Do you plan on inviting Guest Speaker's? I'll be glad to Fly over, lol, lol. just kidding .

    I wish you good luck and hope that this will work for you, it's a Great Idea, and so nice of you to want to Reachout and help other's. Sounds like you have a Big Heart.
    Just keep some of that Heart for yourself.

    God Bless You,
    kredca4/sharon
  12. nktigger99

    nktigger99 New Member

    I will be doing mine through the Big Army hospital here (Landsthul) with the help on the red cross. If the red cross supports it then I can get a pass to the hospital. And also all the people who would like to help with it could get training through the red cross. And they can do some of the advertising for it.

    we will see over the next few days what pans out. This weekend I plan to write up a perposal(sp?) with what I want to get done things like that. Of course like most weekends I don't get much done so we will see. I can always do it at work if I have too.

    Nichole