Discussion in 'Fibromyalgia Main Forum' started by bluestanglady, Mar 1, 2006.

  1. bluestanglady

    bluestanglady New Member

    Just wondering if any of you attend support groups about FM and CFS and if you do, how are your meetings done. I attended my first one last month and I wasn't impressed at all. The meeting was held at a large church social building. The person in charge of the meeting got there when we did, the building was cold, we met in the middle of the social building (the large area). We had to get our own chairs out of the racks. They were hard and cold. We had to keep our coats on because it was so cold. The lady in charge of it had printed some things off the internet and for one hour basically just read what was on the paper. A few people got up and left before it was over. This month's meeting was the same and on the same topic (Seasonal Affective Disorder). It was so boring. I was attending hoping to get new information and make new friends. There was no socialization. Everyone just got up and left afterwards. I had looked so forward to attending, but I'm not going back. I wish the lady who organizes would ask for feedback (she made a comment the first meeting that if more people would come, we'd probably be able to have doctors and guest speakers, etc.) I would love to tell her if she would make it more comfortable, have the church provide coffee, hot chocolate, make it warm and inviting, then maybe more people would attend. I can see why people drop out after a few meetings. If you attend support groups, what are ways your group makes it inviting and makes people want to leave their warm homes to come to a support group? I travel at least 40 minutes to get to this group. Thanks!

  2. Hope4Sofia

    Hope4Sofia New Member

    I went to one last night for the first time. It was similar to what you described. They were informative but I felt out of place. It was more of a class than a support goup but I guess there's a place for that too.

    I sure would like to find something. I have found a lot of comfort here but was just reading everyone's posts on site details and feel a little uncomfortable now.

    I just want a safe place where I can go to relate with people who understand my struggle.

    I think the ideal setting is in a warm soft place - even someone's home would be nice. I'm wondering if we contacted our Drs if they might know of something.??

    Good luck - sorry not very helpful.

  3. Bambi

    Bambi New Member

    I found out about through the Arthritis people. I called to get the
    general information about it and did NOT like the sound of it.

    First off the majority of people who attend are people who live in the mobile home park where it's held. They are mostly well over 70, neither thing would stop me. BUT, NONE of them have been able to find any sort of pain control from doctors (the old wives tale about older people being too easy to overdose to treat for pain), so they have all been (for a long time) trying Accupunture, Chiro, Supplements etc and none have had any success with any of it. They all
    suffer a great deal (I got this from the lady who runs the group, barely able to speak).

    The group rule number 1 is NO talk about pain, NONE. They don't have speakers except for the occasional
    supplement salesperson.

    In any case it didn't sound like the
    group for me, it would be soo depressing to see a whole group of people suffering and not allowed to even mention it for one thing. So I just thanked the lady for the info and did NOT go. This board is by far
    more in my line of a support group though I have been seeing a lot of
    "opinions" being stated that online
    support groups make people "worse". Yeah right! We just moan and groan and convince each other we are worse
    off than we are and it's catching is
    basically what's being said.
  4. smiffy79

    smiffy79 New Member

    i tell ppl i belong to an online support group and this is exactly that.
    i have made friends chatted about my interests and other ppls, ive tried to provide 'comfort' (my own special brand
    lol) when ppl have been down on their luck or are feeling terrible over whatever it may be.

    i am very happy here and no where will you find such a large and fasinating bunch of ppl all struggling with what you struggle with every day and yet so full of life in our own ways.
    this is the place for me :)
  5. Adl123

    Adl123 New Member

    I'm sorry your group turned out to be a useless one. I wish I had better news for you, but mine did, too.

    It turned out to be a pressure group with people telling me what to do without understanding my situatiohn. The leader let them be amateur psychiatrists, and one day it got so bad, when great significance was given to the way I was holding a piece of paper, that I left and never returned.

    It takes a really good , organized and generous leader to create a good group. Just reading thngs or turning over the dynamics to unimformed people, who are also struggling, is the easy way out. IT takes no effort or creativity, and can be very harmful.

    I'm glad you realized this. Please keep on trying. I hope you find a good one. I'm sure there are some out there.

  6. crumpton

    crumpton New Member

    My doctor kept trying to get me to go to a support group at our hospitsl but I keep telling him that this is my support group.

    Maybe I'll try the other one day but I have a hard time going to see a large group of people or even spilling my life story to a counselor. It takes so much out of me.

    This site doesn't take so much out of me -just read if that's is all I want to do or respond or post a topic with a question - plus I can come every day sometimes more than once a day.

    This is a support for me.
  7. tngirl

    tngirl New Member

    The room is comfortable, coffee, tea and hot chocolate available. Plenty of socialization. No guest speakers yet, but I have hope that we will be able to get some.
  8. Hope4Sofia

    Hope4Sofia New Member

    Where are you. I'd like that kind of group.

  9. marw

    marw New Member

    HI there,

    I(marw) am trying along with Nancy (getfitat40) to start one in Chicago. We are meeting this coming week-end at a near-by restaurant. Anyone in Chicago is welcome to come! Post here so we know who you are, and can tell you where we are.

    I think it will work. I've organized groups before, although not an FMS/CFS group. They should be whatever the people in them want them to be, in my view! The idea is to provide information, support, a friendly environment, and so on.

  10. Bambi

    Bambi New Member

    12th step program. I went with my friend to one a few times and it was really nice. It got so big by the time I went they had to pass out chips to see who could talk that night about problems or anything..but they did make exceptions. It was in a church also. It was very open and friendly with a set of things they did every week but then had a lot of other time for just chatting also.

    Afterward they all went to a local cofee shop for coffee and just associating. I almost wished I had my friend's issue so I could go all the time. LOL!
  11. PVLady

    PVLady New Member

    I don't belong to a group but I would like to. What you are describing of your meeting does not sound good at all.

    Today in our local newspaper a doctor wrote a article about CFS and fibromyalgia. She said if anyone is interested in starting a support group, to contact her.

    I am tempted to call her and see if she wants to start a group. I would probably let them have a meeting at my house. My husband can wear a apron and serve us goodies, ha ha!!

    I think it would be much better in a warm home, in soft chairs, with low lights, etc.

    Your post gave me a good idea. What I like is a doctor wants to participate in the support group (maybe she has fibro or cfs?)

  12. rockgor

    rockgor Well-Known Member

    Do not know of any support groups for FM of CFS. I have had good luck w/ a 12 step group called Emotions Anonymous.

    The meetings are 90 min long. There is a format, a group leader and rules. The members take turns being the leader. You are not allowed to interrupt the speaker. No one is allowed to tell you what you did wrong or what you should do now. But people can share on the same of similar problem and what worked for them.

    There is a free will offering to buy coffee. Sometimes people bring cookies, etc. Many members of the group go out after the meeting to have coffee, lunch etc.

    The meetings have always been in rooms w/ a comfotable temperature, but the general rule is metal folding chairs. (Some people bring their own cushion.)

    There are some EA message boards.
  13. Leaknits

    Leaknits New Member

    Couldn't help but chuckle, Blues...
    Years ago I phoned around Lake County here in North CA to find out if there were any fibro/cfs support groups.
    Finally got the home number of a lady who headed up a cfs group. She told me there were around half a dozen members but most of them were too tired most of the time to make the meetings.
    NO, I wasn't chuckling because it was funny. Ironic is more like it.
    As another replier said, right here you will find a great support group.
  14. tngirl

    tngirl New Member

    I am in Tennessee, I wish you were here to join our group!
  15. lighthouselady

    lighthouselady New Member

    I have been in a support group for about 4 years now. Our leader lets us all speak for a few minutes, telling how we are, what's been happening with us and those such things. At times we have speakers and other times it's just us. They have been a great help to me and others. When my husband recently went through 2 surgeries in 3 months they called and checked on us, prayed for us and offered to help. These are people who already are sick themselves. I really look forward to our meetings. Sometimes it sounds like all we do is complain but that's when no one is feeling very well. Other times we laugh the whole time. I wish everyone could have the experience I have had with our support group.

  16. ldbgcoleman

    ldbgcoleman New Member

    I think it depends on the group and who's running it. My experience is everyone sitting around complaining about the DD which is helpful for some but it just depressed me. I went looking for answers but the members had pretty much given in and given up.

    I do think you go through stages with these chronic health problems. Once I accepted what I had and became determined to get better I started findinf the answers I was looking for.

    I think you need to start your own so you can set the adgenda. They have some Arthritis/FM swimming classes here that my Dr recommended. Maybe you would meet others that way and do something good for yourself at the same time.

    Take Care Lynn

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