Do not know what is going on with my body

    • Anonymous
      June 16, 2009 at 7:49 am

      I am writing today because I do not understand what is going on with my body. Someday my body hurts so bad that it make me cry and it hard to do things. Other time just mild pain. Then some days I feel good no problems with my walking and other days have major problems walking. Then the fatigue some days have energy and others none. There are some night that I wake up in pain and I rock on the floor. I came down with GBS 11 years ago and still have problems. And the my doctors sometime says I have CIDP and other time he says GBS. I am confused.:confused:

    • Anonymous
      June 16, 2009 at 8:39 am

      Where are you located? It sounds like you need a new doctor who will do testing and get to the bottom of your diagnoses. There is help out there. Tell us more.

    • Anonymous
      June 16, 2009 at 2:39 pm

      Are you getting any help to deal with the pain and discomfort?

      Have you had any IVIG ?

      What about pain meds?

      Sounds like you need to talk to doctor in more detail.

      Take care

    • Anonymous
      June 16, 2009 at 7:28 pm

      Hi: You could be suffering from residuals related to GBS, or even from Post GBS which is now getting some attention from doctors, or it might be CIDP. I imagine it is GBS residuals or post GBS-in either case I agree you need to see a doctor who will first do tests to determine what is happening, and then give you the medications that will help get your pain under control. Neurologists are the ones who would give the tests but for pain control I recommend a physiatrist. Good luck. Jeff

    • fairly_odd_mother
      June 19, 2009 at 11:50 am

      I go thru the same thing. Some days are so wonderful that I function on a nearly normal level. Feel great, can do all kinds of things, and forget I was so sick. Hours later or the next day or two…BAM! Pain, uncomfortable, weakness, feeling poorly, in bed hating life. I am almost 3 years into this. I do agree with the others, see a different doctor and get tested. There is help, there is relief. You deserve to live as normal a life as is possible!

      We are hear to listen so feel free to talk our ears off. Lots of great advice too!