new to the boards and FMS....what to do now?

Discussion in 'Fibromyalgia Main Forum' started by JILLIE, Jan 11, 2003.


    JILLIE New Member

    Hi Everyone,
    This has been a long exhausting road to diagnosis. I have had symtoms for about 5 years, but have been real ill for about 2 yrs. I think I have had every test that exsists all are normal. Also have seen numerous doctors. One neurologist swore up anddown that I had MS but couldn't find any lesions to prove it. I belong to an HMO an will finally after 18 months of searching for a diagnosis will be seeing a Rheumatologist. All I can think of is what if he doesn't support FMS. I had an Emergency room doctor tell me and my husband that FMS does not exsists, and that it is glorified depression. That was rude. I have learned that doctors seem to be split on this one. Some say it's real and some don't believe it. So what do you do once your diagnosed? I mean my life has been turned upside down with this. I can't plan vacations or anything because I never know when I won't be able to move. Sorry for rambling on but my cup runeth over. Any words of wisdom from the wise??
    Thanks, Jillie
  2. Nana2Andromeda

    Nana2Andromeda New Member

    Hi Jillie

    Happy to have you here.
    When do you see this Rheumatologist doctor? My advise to you is don't give up hope. When you see this this new doctor, start from the beginning. Write down your daily symptoms, leaving nothing out. Even if your little toes hurts, write it down. Also rate your pain from 0 to 10.
    0...No Pain
    2...Slight Pain (you know it's there but hardly notice it)
    4...Mild Pain (a little more pain than slight pain-it does not stop you from doing anything)
    6...Moderate Pain (wakes you from sleep or makes you stop your activity to ease the pain)
    8...Severe Pain (you cannot stand the pain and are unable to do any activity or sleep)
    10...Horrible Pain (the worst pain you can imagine)

    Let me know if this helps.

    (((((Hugs Hugs)))))

  3. jaster45

    jaster45 New Member

    Well I can tell you many of us have suffered tremedously and it is a tedious and long journey.We can empathize with your pain and frustration.Sorry to here about Dr.'s and there lack of compassion and understanding.Most of us have been there done that.I think you will find this board to be quite informative and educational as well as an avenue to complain and vent when necessary.I am somewhat new here as well a few weeks or so.There is a lot of info on the ways people deal with there illness.Whether it be nutritional,conventional,or both together it is here.

    Anyway hang in there and if there is a will there is a way.

    Take care,
  4. selma

    selma New Member

    I want to give you a great big soft hug and welcome you to this board. On weekends many are off . You'll find out that many of us have been thru the same things, unfortunately.
    My last dr. didn't believe in FM either. Sorry no words of wisedom. You need to be strong and I know after you use this board to get info you will be able to tell those ***drs. a thing or two. Many drs. disagree on the grounds that they don't know what to do for it. Look up everything in the Library here. It's one of the choices above. There is a Search Messages box above Put in what you want to look up. Get books from library. You can also look up contributors on this board and see what they've posted and the answers they received.
    Again I want to send my Love and know that we will get to know each other. Huggs, Selma
    [This Message was Edited on 01/11/2003]
  5. Shirl

    Shirl New Member

    Hi Jillie, welcome to our world. Glad to have you with us.

    Do take Donna's advice and list your pain, and where it is and how bad it is. Also if you are having any other problems, list them too.

    That is the very best way to deal with a new doctor. Most of us will forget our names when we get to a new doctor, its best to be prepared, in writing!

    Good to have you join us, and again welcome to the board.

    Shalom, Shirl
  6. marcus1243

    marcus1243 New Member

    I wonder if you could share your symptoms with us? It might help us to shed some light on your illness. Just the main ones would be useful.
    Best wishes,