• Anonymous
      August 8, 2007 at 11:07 pm

      Hi all I need help badly I just don’t know what to do. I can’t be touched my wife of 20 years this year cant touch or hold Hug etc. its killing us I so much want, need a hug ,hold hands etc But I just cant the Pain is so severe. My Darling wife Jen puts such a brave face on I know it hurts her so much I know she cries in quiet I Love We Love each other so much but this bloody cidp is stuffing everything the whole life thing has gone to crap.Even in Bed if jen just moves the blankets just a smidge the pain just goes bang.Back to square one.This bloody thing I have got or Jen says the both of us have is like a poison slowly coming and pushing us apart and I certanly don’t want that. Any advice, comments , greatly recieved

      Kind Regards


    • Anonymous
      August 9, 2007 at 12:23 am

      Paul ~ I am so sorry for you and your wife. This is such a tough issue to deal with. I have GBS but I well remember the horrific pain those first years . . . I can’t begin to give you an accurate number of times that hubby and I could only touch the outside of the little finger or little toe. And I hated it when I had to say “enough” because it was to much. You will have to trust Jen when she says it’s OK. Of course she misses the touching to but after 20 years of sharing life she is just glad that you are still here! When we say “in sickness and in health” we only expect the health part but most of us truly meant that and will stand by to help. That is love.

      What are you taking for the pain? Neurontin or Lyrica? There are others who have CIDP that will be along with advice.

      I just wanted to say that I care for you both. Your lives have been irreversibly changed but you can do this together ~ one moment at a time. My husband and I are 12.5 yrs out from our “change”. No, it hasn’t been easy for alot of the time but hey, it’s “do-able”. Remember the song “Lean On Me”? Well, that’s what Jen needs from you; to lean on her. She is the strong one right now.

      I wish you well, for both of you. Hugs 🙂

    • Anonymous
      August 9, 2007 at 1:17 am


      I am deeply sorry that you and your wife are going through this…yes, love
      is deep and you both have each other. I agree, your wife is alright, knowing
      that you are here, even next to her.

      In my case of CIDP, I d not have any pain, so I can’t suggest anything to
      help you physically. However, I can tell you, we all empathize, knowing how
      frustrating this is to you and your wife.

      Please hang in there, keep positive thoughts in the fact that your wife loves
      you or she wouldn’t be there…that is real love.

      Miami Girl

    • Anonymous
      August 9, 2007 at 2:16 am

      Dear Judi Z
      Thank you for your kind reply and thoughts. I am on Neurontin I was on the Lyrica as well but being in a chair I would be coming back from the Bathroom and I would fall asleep half way back and theey thought I would fall out and do more damage so they took me off it

    • Anonymous
      August 9, 2007 at 5:00 am

      Paul how much Neurontin are you taking? Some people take up to 3600+ a day for the pain and there is Cymbalta that help the pain also. There are other drugs that might work also. I take Lyrica and it does make a person tired. How much were you taking of the Lyrica? Maybe you needed to lower the dose slightly?

      Hang in there we will try to help you.


    • Anonymous
      August 9, 2007 at 5:02 am

      Thanks for your reply
      The Neurontin is 4 x 1000 per day
      The Lyrica 2 x 75 per day
      They then changed that to 1 x 75 buy it still happened real weired feeling waking up and thinking how did I get here
      Thankyou for your Kindness

      Kind regards


    • Anonymous
      August 9, 2007 at 7:14 am

      Paul – seems to me I recall the British version of the GBS/CIDP Foundation organization has a pamphlet on intimacy issues dealing with situations like yours

    • Anonymous
      August 9, 2007 at 1:33 pm

      I’m so sorry that you are having such a tough time of it! I dont have any advice or suggestions unfortunately, only that my heart goes out to the both of you. By the way, Lyrica did the same number on me.

    • Anonymous
      August 9, 2007 at 2:31 pm

      Hello Paul,
      I did a google search and you might want to try this group of CIDP people. You may be able to join their forum and find someone who can relate. On this site they mention EXTREME SENSITIVITY TO TOUCH as part of CIDP. Their web is [url][/url] If I got the web wrong just try going to google and putting in CIDP AND EXTREME PAIN like I did or PM me and I will find again.

    • Anonymous
      August 9, 2007 at 3:48 pm

      Hello again,
      I thought I was providing helpful information in my previous post, but I went back to the site I posted about and the support group is no longer there. Maybe you can still get ahold of someone if you click on CONTACT INFORMATION
      But the extreme sensitivity to touch is CIDP and maybe there’s a way to control that much pain.

    • Anonymous
      August 9, 2007 at 5:03 pm

      Hi Liz the links home page works but some of the links are screwed up.
      Only use the links directly from the home page because once you leave the home page the other links don’t work very well