Residual Pain, Numbness, Aches, etc.

    • Anonymous
      December 21, 2007 at 9:14 am

      Returning member. GBS diagnosed in 1993, CIDP diagnosed 1998. presently not under treatment.

      My questions:

      1. I have heard that there is a “life” to this disease. That it will eventually end, true?
      2. I presently have numbness in feet, hands, and occasional sharp pain, flare ups, and general aches. How do most deal with these issues? Does anything help?
      3. I try to be physically active and work out, but I find it increasingly difficult (sore, aches). What works for most?

      Appreciate the information. Thanks!

    • Anonymous
      December 21, 2007 at 3:54 pm

      i live with legs to feet, numb, burning, pain, tingling, and a tight band around my toes, or feels like one. i have the same feelings from the elbows down to the finger tips.
      also, am very weak, tired, and unable to do much of anything expect shower, dress, and use walker to get to bathroom.
      I was totally independent in NOv 2007, so have went down a lot. got the dx of cidp in nov 2007
      I do not know if there is an end to this disease, but i sure hope so, it was totally changed our lives and my husband of 46 years is now total caregiver.
      after doing some reading i think i will be living with some of thee symptoms for the rest of my life, just different intensities.
      will be praying for you and keep us posted.
      i will look forward to the other responses from the people that have lived with this for a longer period of time.
      my neuro tells me to exercise each day.

    • Anonymous
      December 21, 2007 at 4:37 pm

      Sorry to hear that both of you have cidp. It SUCKS BIG TIME!!! I have had this disease for 16 years now and hate everything about it.

    • Anonymous
      December 21, 2007 at 10:37 pm

      We are not lab rats in a controlled environment…so what works for one person, may not be the same for another.
      I for one, can very cautiously say, that I might-after 3+ years of IVIG treatment may be having some improvements.
      To speak any more would be complicating, as I have several other medical issues that overlap symptoms. I will say that I’ve learned as much as I can about each issue and am trying to get my diverse doctors work in concert. That may or may not happen.
      Thing is, after many years of numbness, there’s a bit of extra ‘sense’ in both my feet and my hands!
      I have to tell you, that I was beginning to despair of anything concrete in terms of healing or progress. I am more surprised than ever imagined that it’s happening! There is hope. I plan to keep on hoping. No matter what.