Just diagnosed?

Discussion in 'Fibromyalgia Main Forum' started by anemella, May 21, 2006.

  1. anemella

    anemella New Member

    Hi! I'm Kathleen, 37, live in CT and was just told after 4 years of lots of pain and no "diagnosis" that (these are my dr's words...) "For lack of better terms, we're just going to call this fybromyalgia." She recommended a book and I ran home and jumped on my computer and the lights just started going off in my mind. Everything I read about this disease fit me to a tee. I had never even heard of the disease. My husband was getting upset that I was so tired all the time (we have 4 daughters 10, 8, 3 and 1) who keep us pretty busy so I just blamed that. I received the diagnosis about a month ago and am trying to do all I can to educate myself but I have very little time to research and my dr. isn't very helpful. I am searching for a FM specialist in my area. SO now I'm looking for information, support, understanding, and a place to go where others are in the same boat. Thanks for listening!

    Kathleen
  2. erfula1

    erfula1 New Member

    That is one thing, there is a lot more info and support out there than when I was first diagnosed.

    I recommend you find a rhuematologist. Just make sure they treat FMS cause the first one I went to still thought it was a mental disorder. Needless to say I never went back to him.

    The Dr that diagnosed me and researched it and tried to help me the most was actually a physical medicine DR. I lost my insurance when I lost that job and so I couldn't see him anymore. Now DH is seeing him for his rhuematoid arthritis and he loves him.

    There are good Drs out there but it can be a very frustrating search.

    You might want to try I think it is good doctors.com. Someone else here might know for sure.

    Good luck to you.
  3. mrsjethro

    mrsjethro New Member

    I've just been diagnosed fairly recently myself. I did some extensive research on the internet and came up with a lot of information and bought several books, but the love, support, answers to questions that I thought were stupid (they assured me they weren't) everything that I have needed for so long I have found here. These people are some of the most wonderful people I have known. They all understand what you are dealing with and really are sharing your pain and struggles. Some have found answers that help them and are more than willing to share anything that might help you. Welcome home!!!
    (((((((hugs)))))))
    mrs
  4. KMD90603

    KMD90603 New Member

    However, I'm sorry we are meeting under these terms. I'm Kim, 24, and I was diagnosed with fibro in 2003 and CFS in 2004. My fibro is relatively mild, however, the CFS is out of control these days.

    Research as much as you can, however, don't allow yourself to become so absorbed in the disease that you give up on things you enjoy. Remember, there are many different faces of this illness. You'll meet people who are completely disabled, and then you'll meet others who are fully functioning. It is possible to still live a semi-active life, just in moderation.

    As far as finding a specialist, rheumatologists usually deal with fibro. However, I would strongly recommend screening them before making an appointment. By that, I mean you should call and ask if the doctor sees a lot of patients with fibro, and do they believe it's a real disease. I see a rheumy for my fibro, and an infectious disease doctor for my CFS. However, my fibro was in remission for over a year, so it's been quite a while since I've last seen the rheumy.

    Again, welcome to the board. Gentle healing hugs to you.

    Kim