Touching

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 🙂

Paul

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

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.

Sue

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

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.

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]www.calgarypners.org/info.htm[/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.

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.

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

[url]http://www.calgarypners.org/index.html[/url]

Sue