need feedback

    • Anonymous
      October 7, 2006 at 11:55 pm

      I was at pt on friday and she asked me if my endurence will get better as i get stronger???????????????

    • Anonymous
      October 8, 2006 at 1:25 am

      its hard to answer that one. it could in the long run, but be very careful on how hard you push it to get it up there. rest is very important, endurance is not as important as rest. if you push to hard and wear yourself out you could go backwards in recovery instead of gaining any ground. in time, who knows what will and can happen. just keep a positive attitude and stop to smell the roses along the way! take care.:)

    • Anonymous
      October 8, 2006 at 2:35 am


      Remember as well, If your nerves are healing (remyelinating) and are doing their job again, then yes you shoud see improvement in both strength and endurance. If your damage is permanent, and regeneration is not and will not occur, then you will only have so much nerve support for your muscle. That would limit your ability for a lot of strength/endurance gains.

      It is however important to keep what you have, and not lose any more due to inactivity. So keep on doing what you can, and when you get tired, stop.

      Take care

    • Anonymous
      October 8, 2006 at 7:45 pm

      Thanks for your feedback, i was in med rehab for a month and now that i am home, i am going to pt 3 x a week and getting IVIG every 3 weeks. Iam trying to get my lifeback after 14 months of this, but this CIDP just keeps pulling me back down. It seems that i take 1 step foward and then 3 back.
      I try to go to the beauty shop after my pt on mon, wed, and fri. just to answer the phone and be out of the house. and some times my friends just dont understand how tired i get. They say come to the shop and be with us, you cant just sit home and do nothing. I know they mean well, but they just dont get it some times

    • Anonymous
      October 8, 2006 at 10:19 pm

      I know what you mean. Those that don’t have CIDP can’t understand how tired we get and everything else we go through on a daily basis. I am sorry that you are going through this but I was glad to see that there are people that understand. I needed to see that today. I had a meltdown today because I can’t do what I normally do around the house. I am in a wheelchair (not due to the CIDP) and now my arms aren’t strong enough to do anything I normally do. So anyway, I am glad that we have a place to vent. Take care.:)

    • Anonymous
      October 9, 2006 at 7:36 pm

      I am not sure how do post or ask a question on here?

    • Anonymous
      October 12, 2006 at 4:23 am

      I think most of us can relate. My own family doesn’t understand. When I was on a family camping weekend I was resting with my feet up because this seems to help with the pain (not much, but a little) and my aunt made a comment that it must be nice for me to be able to relax with my feet up. People who live without cronic pain will NEVER fully understand. They may relate, but won’t understand. I have decided to send my aunt a link to this forum so she can see what other people with CIDP live and deal with daily. This forum might also help your freinds and family understand.

    • Anonymous
      October 17, 2006 at 5:23 pm

      It’s good to be able to see that we are so alike in so many ways. With kids, school, activities for the kids and house work it is so hard to find time or energy for anything else. Talking on the phone when people always ask “how are you doing” I don’t even want to awnser the phone anymore, they expect that you should be better by now, “why don’t you call if your at home all the time?” I’ve had some family say that I must not like them anymore because I don’t call. How do you explain all that is going on when you yourself don’t understand.

      I am thinking of checking out some type of mobility unit. I am walking with a cane, but now my arms are going numb more often, not to mention the pain and the cane is difficult too. Do you just stay home and not do.

      I’m going for my next IVIG thursday and friday. Does anyone get worse the week of their IVIG? Do you all feel like it wears off?

      thanks for a place to vent! 🙁