THE BIG QUESTION Do the message boards make us feel worse????

Discussion in 'Fibromyalgia Main Forum' started by backporchrags, Mar 16, 2006.

  1. backporchrags

    backporchrags New Member

    I know that some doctors feel that people who go on this type of message board may actualy make themselves feel worse. The thought is that people will start to associate others symptoms and pains to themselves, be them imagined or not.
    So I wondered if there is any validity to this argument. Had I started feeling worse before I found this community or did contacting others with FMS somehow make me feel worse?
    I stopped posting here for a few months to test this theory out. (I also was in a really bad flare) Can you guess the outcome?
    Right, I actually felt worse those months. I missed the comradery and support. I felt more isolated and misunderstood.
    I guess this myth is debunked, at least for me. Next I am going to disprove the "bored housewives syndrome" myth! lol
    Wish me luck!
    A
  2. amymb74

    amymb74 New Member

    up to other activities then I am not on the message board but when I'm in my cfids funk I'm here looking for info. I think it sure beats feeling alone in all this.

    Also, when I started getting pvc's (irregular heartbeats),I was looking for info online on how to help get rid of them and I came across a pvc support site. Well, now when I get them steady for days on end I read a few posts there to remind me I'm not alone - it makes me feel a lot better. AMY
  3. marw

    marw New Member

    Before I found this board, I was in a funk. I also thought no one else was suffering like me, and I thought I might be crazy. This has been a God-send to find out that there are other people like me, and that I'm not crazy.

    I have also found so very much good information here....little tips about how to do things to make life more comfortable. I'm sure a person would never learn this from their doctors. Also, we have a lot of people to learn from, and so learn lots more.

    I think that's a little nuts to think you would adopt someone else's symptoms. Just my opinion.

    Margaret

  4. hartogold

    hartogold New Member

    This sight has saved my life more than once. I actually came tonight to get a little support. Today, it seemed to all hit me. I looked at my box of numerous meds, and realized how much pain I've been for so long, and no doctor seems to be able to find the right mix to deal with the excuciating pain that wakes me up especially in the morning, yada yada, and the pain goes on.

    Yet I have to say it can be a little hurtful when you post doesn't get any responses to your post. But over all, this site has been very helpful.

    Sandy
    [This Message was Edited on 03/16/2006]
  5. jaltair

    jaltair New Member

    The answer to this question depends on each individual person and their objective abilities.

    When I first came to this message board some 2 to 3 years ago, I came to learn about what FMS was, and I definitely learned. I found this site to be the best of the support groups on the internet, and I continued to return.

    Through the time spent, I’ve felt at times pushed aside and had to learn to just let it go and not take things too personally. I have gotten very frustrated at times.

    There have been times that I’ve spent a lot of time on the boards, and other times when I have spent very little time on the Board. I find that when I feel better and am occupied with other things, I tend to spend less time. On the other hand, when I feel worse, I am on the board more. My husband has worried that the board makes me feel worse as he’s observed this phenomena.

    I’ve listed “pros” and “cons” that I’ve found using the board. Like I said, use of the board needs to be balanced with common sense and objectivity. You have to be your own facilitator.

    Pro: The internet gives anonymity through use of “user names” rather that real names and physical identity is protected. This may make some individuals feel better about sharing their problems/concerns.

    Con: Because of the anonymity and physical identity being protected, you could have one person with multiple identities who are just “playing” with the Board for some personal gain.

    Pro: The ProHealth site maintains a really great website with quite a lot of information for those who are looking for more information about their particular problem.

    Con: There is no way of having actual facilitators to promote discussion in an open an unprejudiced manner; information may be provided on message boards and chat that is biased in nature.

    Con: Some people bask in medical problems and actually obtain gratification from illness through some means be it attention or financial, etc. In live support group activity, these people would be quickly weeded out in the process.

    Con: Some people tend to get too involved in other’s problem. Again, in a live process, this would be mitigated by facilitator involvement.

    Looking at this, I seem to see more “cons;” however, when I need to take a break from the message board, I do, and doing that seems to help clarify what I use the board for.
  6. rosemarie

    rosemarie Member

    I came here and just watched and looked and peeked in once and a while and I found out that there is so much more than a forum here , the info you can get is amazing and it helps me so much. But info alone sometimes makes you feel alone. So I started to post and I found that I liked it here and have been here ever since.

    For me it is having a place where I can come and write about what & how I feel . And what can I do about it. I always know that someone will be here and will understand what I am feeling so that I don't feel so alone.

    For some forums are not for them , that 's ok too. But this forum works for me and it does make me feel better not worse.

    I have learned so much about fibro and the rest of the chronic pain issues that I have. So when I have days that I just don't feel so great I have a place to come and just let it out and tell someone how I am feeling. It helps me to have someone tell me that I am not nuts .
    Thanks,
    Rosemarie
  7. KelB

    KelB New Member

    I think it depends on your personality and the stage of your own illness.

    When I first arrived, I was scouring the net for any CFS info I could find. Not only did I find useful info here, but I found people who were suffering the same crazy symptoms as me. No metter how many times the docs told me the fog was part of CFS, it was still a relief to find positive proof that I wasn't going completely ga-ga!

    I've had the odd vent here that I couldn't have anywhere else, and it has helped enormously.

    Now that I'm starting to pull out of it a bit, I'd like to think that I can begin to offer others the support and encouragement that I've had.

    If nothing else - and my sincere apologies if this sounds ghoulish and voyeuristic - there is always someone here who is many times worse off than me. I always come away understanding that no matter how cruddy I happen to feel, my life could be an awful lot worse. It's a pretty poor way to feel better, but sometimes small mercies have to be hunted down.

    I certainly haven't mysteriously developed new symptoms since I've been here. It's not like I see other people's illnesses and have suddenly picked up on them. My symptoms are actually reducing.
  8. lease79

    lease79 New Member

    I feel that this board has helped me immensely. I don't manifest other symptoms into my conditions purely because I read them here. If they don't concern me, I don't read them ;)
    Honestly I don't know what I would do if I couldn't come here for advice. I think that I would be worse off, not better ;)
  9. lizritchey

    lizritchey New Member

    We don't assume someone elses symptoms just because we've read about them. That's like saying "it's all in your head" isn't it? I mostly come here to find out how different treatments that I might be concidering have worked for others. It's helpful to be reminded that I'm not alone in this struggle and that there are others who empathize. I don't like to spend too much time here though (many days in a row) or I get depressed about all the suffering. Sometimes I need to stay away so I can try to distract myself from this DD.
  10. Cromwell

    Cromwell New Member

    If I did not come here, then I would go for days without speaking with a soul except DH and child. I have two friends in the world, and I hear from them about once every two weeks, plus my MIL and FIL, but that is no place I can go for health issues. My DH is head injured my son autistic, so I feel I have the friends here that I can chat and listen to. I do also keep busy. Exercise, remodel houses, work as consultant from home when I feel well enough.

    This board makes my day. It is the best thing that happened to me. Plus I feel it has given me great advice. Maybe docs are thinking about boards that are very negative. Or knock doctors?????

    Gosh, when I am low, I only have to post and get several replies that make me feel BETTER not worse.

    Docs are wrong on this one, except maybe, the computer can hurt my neck, but those same docs would not say don't work.


    Love Anne C
  11. Rosiebud

    Rosiebud New Member

    but came to conclusion I have improved - I have more insight into my illness, I dont feel so isolated.

    It's okay to say that it's better to keep real friendships, but when you are mostly housebound then it's pretty difficult to do that. I had a terrible sense of isolation before I found boards.

    love
    Rosie
  12. Jane_Canuck

    Jane_Canuck New Member

    INteresting post.

    I would agree with most at the beginning when I first found the board I needed it!

    I have been attacked personally on the board which did make me quit and in the time I left the board I got much better in overcomming alot.

    It was about 7 months before I came back and now I pick and choose carefully what I read from others as I do not want to drain my energy reading alot of things that may take emotional energy, I find it is harder to replace that energy when it is gone.

    I have seen a change in the board over the last almost 3 years it has matured and more thought provocing things have come up and that is a great challenge. I love thinking and making my mind work because it shows that I can have control over the fog and that is important to me.

    If I can help someone that is a great feeling, I think that now that a few rules have also changed on the boards it has made it more enjoyable to help again.

    Over all if you know how to limit yourself and learn your own boundaries you can get great help here! I thank everyone that I have had help from you are all invaulable to me.

    Blessings Brenda
  13. mahx

    mahx New Member

    although I don't mean that literally....I do mean that at the time I found this board and the chat room..

    I was emotionally bankrupted. I was almost convinced I was a crazy hypochondriac.

    Since, I have found it very useful and informative...I have also been able to help others.

    My doctor, strongly encourages this. She knows how different everyone is with this dd...the best thing we can do is take control of our own health. This board helps us do that.

    Some days I come on here..or in the chat room...feeling terrible..I get much needed support that only others with the same condition can give.

    Also, it allows us to help others and not always focus on ourselves...which in turn makes us feel good .

    Sorry for the long post...this subject really touches me. I have had well meaning people tell me this board has prolonged and encouraged my illness. They just don't get it.

    Ma
  14. Cromwell

    Cromwell New Member

    I just wanted to say that was awful that you got attacked via the board. Someone got a little iffy with me a while back but she has since left the boards.

    I do think most people come here to either help or receive validation support but as in life there always willbe the MY way or no way brigade.

    LOve Anne C
  15. halo52208

    halo52208 New Member

    I can't tell you how much this board has helped me. I have learned so many new things to try that will ease my pain. I feel better after changing to those new things.

    You even helped my son with his wart problem. I will never give up this board because it helps me to much.

    I just want to thank all of you for being so kind and helpful even when your hurting, you still post answers to peoples questions.

    My hats off to all of you.

    Hugs Halo
  16. Adl123

    Adl123 New Member

    Hi,
    Actually, I think that if someoone feels worse when reading posts a lot, it is becaue they are becoming conscious of how they have been feeling all the time, but they had not been paying atention to it. I know that is the case with me. The idea is not to become obsessed.

    I've found the information and support I get from this message board to be invaluable. I realized that forcefully yesterday when the board and my posts could not be found. I really got upset. It was like losing my friends. I felt all alone, again.

    I think the danger of becoming too introverted is more than balanced by the benefits. Many of us have absolutely no one else who understands or who supports us, or who helps bear the burden of the physical things we all have to do, like bathing and cleaning.

    The information and support we receive helps us go out into the world and deal with people like doctors from a position of strength and knowledge. That can be very intimidating to doctors, especially the insecure ones. I can understand why some doctors would not approve of the boards. They don't want any challenges. They are protecting themselves, so they can stay in their comfort zone.

    I don't think one can speak too forcefully about the benefits of these boards. I, for one, am really grateful that they are here.

    Peace,
    Terry
    [This Message was Edited on 03/17/2006]
  17. NyroFan

    NyroFan New Member

    backporchrags:
    I find that the group helps with useful information and kindness of spirit.

    Hugs,
    NyroFan
  18. RockiAZ

    RockiAZ New Member

    Great post!

    I think that could possibly happen for some people if they get consumed in it, but I don't know - I'm not a doctor. Besides, isn't this board considered a "support group"? Are we not recommended to GO to support groups? Hmmm. Sums it up for me.

    I feel like I actually have FRIENDS now. Friends that will be there when I need them and don't have to worry about saying how I'm feeling. Friends that understand if I don't call all the time. Friends that actually care about me. Friends that understand if I'm unable to go with them to ANY social event(you get the idea)...I'll stop for now.

    Will this board make me feel worse? Not a chance!

    Live, Laugh, Love,
    Rocki
  19. rockyjs

    rockyjs Member

    I feel that the moderators do an excellent job of keeping out the posters who just want to inflame and cause problems. And I think the focus has been how to stay integrated with society and functioning as normally as possible in spite of our conditions.

    On the other hand many support groups become isolationists and the members can take on an "us versus them" mentality (kind of a persecution complex). I think that can destroy relationships and harm our cause when we're trying to educate people around us.

    When negative issues are brought up, everything from mean SSD judges to stupid doctors, the topic always seems to be balanced out by those who have had good experiences.

    Also I don't see the "I'm sicker than you are" competitions that I have found in many support groups. That never helps build community. Posters with minimal symptoms are supported just as enthusiastically as those who can barely function.

    You're all a great bunch - thanks for keeping this board an exception.

    Jan
  20. caperkat

    caperkat New Member

    I just came to this board about 2 weeks ago. I was already preoccupied with pain & fatigue every day anyway. The message board is so valuable because I now know there are others like me out there, most with very similar experiences, some more serious, & some less serious. It makes me thankful for what I do have in my life, and helps me to prioritize taking better care of myself. I can also share ideas & advice with my hubby.

    The best value of this board is the awareness which I think is empowering. And of course, the support and encouragement from people who understand, when much of the world (including health professionals) do not understand.

    kat