Phantom Limb feelings?

    • Anonymous
      September 11, 2008 at 5:33 pm

      My sister has been in Fla Hospital since June and is still on the Respirator and had a pacemaker install last week because her heart would stop for up to 10 seconds while trying to wein her off the Respirator.
      She wants to know why her hands feel as if they are floating about 4″ off the bed. She also says sometimes she thinks she is doing things, like gripping something, with her hands. It really confuses her.
      She is in her 60’s and is very scarced.
      Has anybody else had this side effect from Phantom Limb movement or had any conformation from a doctor that this is normal?

    • Anonymous
      September 11, 2008 at 6:36 pm

      It’s called proprioception. It is something I also have and is worse when I am worse. It is an odd sensation that your brain does not know where your arms or legs or whatever part of your body is affected. When I am bad, I can go in front of a mirror and not know that my arms or hand for example, are moving, even so they are. Or as your sister says, she is laying flat in bed and her brain is thinking her hands are somewhere else. Sometimes just tapping on her hands will re orient her brain. I had to do that with my feet so I could drive. If I tapped a few times, my brain said “oh there you are”. Your poor sister, ask her if she has any other questions that the group here can help with. I am also in Florida. Take care, Gabrielle

    • Anonymous
      September 11, 2008 at 7:35 pm

      When I first got GBS, I had two phantom legs. Being drugged up, I never thought to look under the sheet at my legs but I thought I had four legs. Every time I reached under the sheet to feel for my legs I could never find four of them, only two. I even went so far as to ask a nurse if humans had four legs. I thought I was asking a reasonable question. It wasn’t funny at the time but later as I remembered the look on that nurses face, she stopped in her tracks, her eyes got big, her mouth came open, she stood and looked at me as if to say ( are you serious ). After a few seconds as she regained her composure, she said “animals have four legs and humans have two”. I would not tell her that I thought I had four legs after she said that. My phantom legs went away within a week, about three weeks later I got a phantom foot. The foot was not attached to my body but lay on the bed between my thighs. The phantom foot went away within a short time. During rehab, my therapist said others with GBS had talked of phantom parts.
      Hope your sister gets better.

    • Anonymous
      September 11, 2008 at 11:05 pm

      Hi Bill, I Got Gbs Last May 2007. I Remember Having The Same Feelings. I Would Always Have To Ask Where My Arms Were And Legs Were. My Physical Therapist Said It Had To Do With Different Nerve Receipt0ers. It’s Very Normal. God Bless Your Family,

    • Anonymous
      September 12, 2008 at 7:29 am

      Hi Bill! Pleasure to meet you on the forum. I don’t have GBS but have CIDP and the only thing I get while laying in bed is not feeling my legs. I get like parylized when my legs stop moving. More noticible when I am in bed asleep. When I wake up, I have to take my hands and start trying to wake them up again and that takes a good 30 minutes to do. Weird feeling! Strange what the nerves can do to a persons body!

    • Anonymous
      September 12, 2008 at 4:10 pm

      Thank you all for your comments and input. We are trying to learn as much as we can to support Carole, she has been dealing with this since the end of June and is still on the Respirator.
      She does NOT seem to be getting any better with the arms, elbows, fingers etc. She has the ability to move her legs and they somehow seemed to have survived the GBS attack. We think maybe because she was being treated for several months with Neuropathy of her legs prior to coming down with GBS.
      They have tested her last week to see if she can swallow soft food, and she passed with flying colors. But they obviously have to deflate the balloon gasket in the trek. She is being moved to a skilled Nursing home equipped to handle Respirators today.
      We surely appreciate any tips, timetables, and what to expect in the future.