Where the heck are all the FM/CFS Support Groups?!!!

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 12, 2005.

  1. orachel

    orachel New Member

    Seriously...I've been looking for a support group in my area (don't live in backwoods, or anything...I'm outside Toledo) and have called everyone from library, to my docs (all of them) to the arthritis foundation, to my aquatic therapy place. Clearly there are a lot of people out there suffering with this, as average wait for appt with rheumatologist in my area is 3-4 months! What I'm looking for is a group of people who meet weekly or biweekly to come together in support and encouragement. Seems logical, right?

    I mean, come on! In my local paper, there's groups who meet for everything from quilting to caretakers of aging people. There's groups to talk about vintage hot rods and parenting. Why the heck aren't there support groups out there for us? Any ideas?
  2. justlikemom

    justlikemom New Member

    Our local hospital hosts lots of support groups. Perhaps if you contacted yours they could help you start a group.
  3. lvjesus

    lvjesus Member

    it sounds like you know where to find members, perhaps you could think of starting one or brainstorm with others to start one.

  4. LittleBluestem

    LittleBluestem New Member

    I do live in a backwoods (or backprairie) area. The closest CFS support group is a 2 hour drive away and meets at night. But then the nearest fiber guild also meets 2 hours away, in a different direction.

    Starting a group has crossed my mind, but I don't really have the energy. Since there is so little medical awareness/support in this area, I suspect many of the sufferers are undiagnosed and do not realize what they have. As the price of gas goes up, I think it would be more difficult to find people to come to the meetings either as group members or speakers. So I muddle on alone.
  5. orachel

    orachel New Member

    But just don't even have my symptoms even slightly managed yet. And absolutely don't have the energy. You'd have to Tie me Down literally to get me to let strangers into my home at this point...housework gone all to h***, and as houseproud as I used to be, I could never hold a meeting here! lol....Will keep looking, in meantime, you guys here make me feel a little less alone. Thanks!
  6. lvjesus

    lvjesus Member

    you could use the hospital or one of the meeting rooms at the library. You would not necessarily have to "run" the support group to start it. If you are searching for one then you must think you have the energy to GO at least.

    Just a thought. I found one that is about an hour away from me here in VA but that is too far also. This is actually a fantastic support group in my opinion.

  7. ldbgcoleman

    ldbgcoleman New Member

    The group I went to were just sitting around complaining which is fine I went through that stage too (Ask my husband) but at that point I was looking for answers. It was not uplifting becaus many were much worse off than I was and at the time I was going downhill and very scared. The dynamics of the group were just not for me.

    I like this board because I can chose the posts I want to read depending on how I feel. I hope this doesn't hurt anyones feelings but I just can't take the negative posts some days. Of course it is great to post the negative and be able to vent here. There is something for everyone! Take Care Lynn
  8. in my area, but after going a couple times it closed. I think you may have to start one yourself, I bet you would be surprised how many came. I would have one at the local library or someplace other than your home. JMO
  9. EllenComstock

    EllenComstock New Member

    Where exactly do you live? I go to a support group which meets the last Monday of each month. One month we meet in Adrian, MI and the next month Tecumseh, MI. This would probably be too long of a drive for you, but let me know if you are interested. We meet at Carter Rehabilitation Center, which is located in both Adrian and Tecumseh. Our group is small. Some months we have guest speakers, other months it is just an open meeting.

    I'm surprised that Toledo doesn't have a support group. I used to live in Sylvania. Such a large area should have something.

  10. joanierav

    joanierav Member

    jan; i liked what you said, agreed with you. i found the same things happening in the support group i was in. but i have to be honest with you. the main reason i went was to find a friend that i could share with one on one. it took me several months , but i found three all in my area. and 6 years later we are all very close. when you have this bond you dont need a group. we phone each other, we socialize etc. in fact i couldnt handle this illness without a cfs fibro friend. no one understands where we are coming from: family , friends no one, but a person who is suffering with this disease also. but having said this, i recently moved, and i miss them so much, even tho we phone often , it is not the same. and now orachell, i am searching also, there are no support groups here in south jersey. and i am getting depressed. the reason i believe that there is a shortage of support groups all over is that plainly WE ARE TOO SICK AND TIRED to start one or to participate in one. i heard that there was a very good one in the area, but shortly after i moved here it fell apart. this is what frequently happens, they fall apart. thanks for listening and god bless us all joanierav
  11. FM58

    FM58 New Member

    Joanieray-I'm in northern Jersey, there is nothing around here. I've tried calling the ones that are referred to on this site's Support Group section - I never hear back from the people I've contacted.

    I have taken a class at the local hospital, but that you had to pay for & was only 6 weeks. My fibro doc also provides an ongoing class of 4 sessions that repeat themselves. However he charges $20 to attend the session, free if you have an appt with him w/in certain hours that day. I signed up for 3 classes last spring - each one was cancelled at the last minute, due to lack of enrollment!

    orachel, I keep searching in my local newspaper too. I just don't have the energy to start one up on my one either. I guess that's why there isn't one, nobody really has the energy~ugh!

  12. NyroFan

    NyroFan New Member

    Nothing in my area either. I even called the
    'Self Help Clearinghouse' that they have in the phone book here. Absolutely nothing. I guess we are few and far between, but reaching all across the country.
  13. orachel

    orachel New Member

    close friends who wouldn't look at me like a weenie when FM interfered in my life (as it does everyday unfortunately in my case...hoping it gets better, but all this is really new to me!

    Lady at Arthritis Assoc in Toledo said people kept starting them in the area, but could never keep members coming due to pain and fatigue. I can certainly understand that, but was looking more to meet a few likeminded friends.

    Don't get me wrong, finding these boards has been a godsend of information and support, and ya'll are kinda literally keeping me propped up at this point! But would be great to have someone to do coffee/antique shows with when we were both up to it. My husband works like 70-80 hrs per week, literally, and its the only $ coming in right now so I sure can't complain about it! But would love a close friend who kinda knows what I'm going thru.

    Oh, and I'm in Maumee. Will mapquest to check out the distance on that MI group. Thanks!!!!

  14. Scoobsmom

    Scoobsmom New Member

    of Cleveland and would love to find a group...but the ones in the Cleveland area are in the evenings. I would love to find a few people who like to do things in the daytimes....any ideas?
  15. rbecca47

    rbecca47 New Member

    i live in toledo, would love a support group, in the future. right now, i have doc's, therapist,physical therapy, and a group for my depression. i get so exhausted and the pain is awful. but it would be nice to talk with others with fm and cfs. instead of people who have no clue on what you are going through.
  16. orachel

    orachel New Member

    I just saw this...days later. We also have a free "city paper" thingie...I'll be sure to check it and get some free adds out there.