Chronic Fatigue Immune Deficiency sufferers!

Discussion in 'Fibromyalgia Main Forum' started by corney, Jun 20, 2003.

  1. corney

    corney New Member

    Is anyone else out there absolutley sick of dealing with this disease?

    I am so frustrated, there is no real name for it, people look at you like you are crazy, lazy, or looking for sympathy.

    The docs won't diagnose you with it, for fear someone may look at them like they are crazy too.

    Anyone experiencing the same frustrations, I would love to hear from you.
  2. Shirl

    Shirl New Member

    Longtime since you have dropped in here.

    Yes, most of us can relate to your frustration. But don't let it get you down. We know we are ill, and for the most part that is what is important. We know we are not lazy, crazy, and surely not looking for sympathy.

    I believe that most doctors are afraid of us, they are simply not educated in these too illnesses, and many would rather say that we are mental cases, then admit that they do not have any knowledge of what is wrong with us.

    I have FM, not CFS, but I get the same reaction from doctors and people. Its the most misunderstood two illnesses around these days.

    I was diagnosed over 20 years ago, with Fibrositis, then they changed the name to Fibromyalgia, as it does not have inflamation in the muscles.

    But all that I was told is that they did not understand much about it, and that I could take pain pills and use heat for relief.

    I learned more from books, research and this board than from any medical doctors.

    Hope you stay around, you will no doubt get a lot of response to your post, but the weekends are slow on the boards.

    There are a few good doctors for these illness around these days, but after awhile we get tired of not getting very much help and just give up on the whole profession.

    I have been treating myself for years now, and even though I am not cured, I at least am able to function so much better.

    Good to see you back,

    Shalom, Shirl
  3. tulip922s

    tulip922s New Member

    When I told people I had Chronic Fatigue Syndrome and Fibromyalgia, I got responses like "know what you mean, I'm tired all the time too" or "fibro,,,what?". It's a tough one to describe to people and most folks really aren't interested.

    The medical profession has trouble with us,,,no cause, no cure. We are difficult patients.

    I just got a diagnosis for lupus this week on top of having CFS/FM for 2 years. The response and concern from my friends and family has been overwhelming,,,nothing like when I told them I had CFS/FM.

    Why I even got flowers delivered yesterday from old co-workers I haven't seen in years but have stayed in contact with. When I was bedridden and required help just to get out of bed to go to the bathroom for the first 10 months of CFS/FM,,,,no flowers. Hhhmmmmmm, do you think it has something to do with the STUPID name?

    Sorry, makes me mad sometimes. Good post, hope you get other responses. Have a great day. Tulip
  4. Lendi

    Lendi New Member

    I get so tired of feeling nasty all the time. I'm in no way suicidal, but I can't say that I would put up much of a fight if death came upon me either. The idea of dealing with this the rest of my life is overwhelming. Thankfully, I do have some good days to help rejuvinate me. It's just that a good day is what a bad day used to be like. If we could just feel as though there was a light at the end of the tunnel..ya know? Even if our feelings and illness's were validated as a disease with no cure. Then we'd feel as though we were struggling towards something, but there is not. We just hang in never, never land. The tunnel just keeps going on and on.....