Thank goodness for this forum and everyone on it!

Discussion in 'Fibromyalgia Main Forum' started by kokabean, May 27, 2010.

  1. kokabean

    kokabean New Member

    Hi everyone,

    I just wanted to post a positive note about how great and supportive this site has been!
    I am newly diagnosed with FM but the doctor thinks I have had it for about 2 years. I have no patience left for doctors and mine keep giving me the run around and send me from one doctor to the next. I went to my therapist yesterday and she told me to not go on this site because it will only confuse me! I was shocked that I am trying to be informed and am told by the doctor not to do that. Currently my doctors do not want to put me on any energy meds or pain meds so I am going to go today and get some supplements and be pro-active myself. I want to thank everyone for posting their stories and for all the answers that have been posted by everyone. It has gotten me through each day.
  2. Misfit101

    Misfit101 New Member

    I sooo know how you feel! The ppl here have meant everything and maybe even have started me towards finding out something thats wrong with me unrelated to my fibro. Still working on that one as its likely to be a long journey. Arent they all? I hope you find what will relieve your pain regardless of what it is. Good for you being proactive about your health! Ive recently stepped into those waters myself. Good luck to you!
  3. victoria

    victoria New Member

    pts who are willing to research are likely both a thorn in their sides and sometimes a gift... I guess it depends on the doctor. Most do NOT like pts coming in with printed off research, no matter what it's about. I can understand on one hand, but really hate the fact that too often they then also react by thinking the pt is psychosomatic if they cannot find anything with their regular testing.

    I've always been pro-active - not only in taking supplements if RX'd meds failed or just were not possible - but in finding MDs who actually knew something. The internet has made this SO much easier.

    If you're disgusted with the care, and depending on your insurance, you may be able to network online and find someone who knows more than your current doctor(s).

    all the best,
  4. Janalynn

    Janalynn New Member

    I can somewhat understand a Dr saying beware of all information you find on the internet - if that's what your Dr. was meaning. There is so much out there and so much that is incorrect and can be confusing. BUT...her statement was pretty broad.

    Why are your Dr's giving you the run around? What do your Dr.s suggest you do for your pain? Your Dr.s are obviously not familiar with how bad living with pain actually is ~ both mentally and physically. You have Fibro and you will have it for the rest of your life most likely so what plans do they have for you to deal with this very painful condition?

    Regarding doctors. This is how I look at it or think of it - everytime I leave an office, I ask myself.. Is this person a good person to have on my "team"? Are they going to help me move forward or hold me back (emotionally or otherwise) Am I indifferent to them or they to me? Do they have my best interest at heart? Do I FEEL like they truly care? Would I want to go home and write a heartfelt thank you note?

    I know that sounds kind of silly, but that's kind of how I gage things now. I don't have time/energy/finances to waste on people who are not on a 'winning team'. We're all in this fight -this marathon and we need people to help us get across the finish line. We need coaches, we need people on the sidelines cheering us on, we need people holding us up, carrying us at times, walking or running beside us sometimes just to say "I'm here", we need them to offer us what our bodies need, what our minds need and when they don't know what that is, they'll won't give up on us, they'll stick with us and try something else even if that means a little extra work, a little more research, a little more time spent.

    If I don't get that "gut feeling", then I can't afford to have someone who is going to pull on the back of my shirt and drag me down. There ARE good, GREAT Dr's and people out there. Just like other people in our lives, maybe Dr.'s won't always be there with us forever, sometimes we'll need to make a switch - but that's okay - switch when you need to!

    This site reminds us that we're never alone. It's great to discover that other people actually understand what you're going through, how you're feeling and what you're living with isn't it?? That is something your therapist certainly can't argue with.

    It's great having you here. I know you'll have a lot to offer everyone else here!