Painful Nerve Sensation/Awakening – Help Please

    • Anonymous
      July 10, 2012 at 6:05 pm

      Has anyone out there experienced nerve sensation/ pain during your recovery process? A family member is recovering from GBS and is experiencing what he calls nails, glass, wires in his hands, stomach and starting now in his thigh. It is all consuming to him and we are at our wits end in understanding. He is not hallucinating, or crazy, this is the most amazing man I know and he can clearly recall every day of this 7 month ordeal, except the 12 hours on the respirator. Although he has never been able to see anything in his hands in the places that are bothering him, he at times will even feel that if we move the hospital bedding the wires, glass or nails will get into the bed. Because of the paralysis he is unable to be in a position where he can see nothing is there without help. If you lift his hand to where he can look at it, he agrees nothing is there, but still can feel it for sure.

      Does anyone understand what I am talking about? We are located in a small town and don’t understand it all. He was diagnosed treated and in Seattle by a team of doctors but now is in a rehab facility and things are starting to awaken. It is frustrating to see the CNA or the Nursing aids roll their eyes at him as he is dealing with this pain. I just don’t want them to slap a label on him and say he is getting dimentia. He has the clearest mind I know.

      Is there a GBS/ name for this stage of the recovery that I can look up to find help?

      New to this all and want so badly to reassure him and his wife that things will get better.

      Any help would be great!

    • GH
      July 10, 2012 at 7:21 pm

      There is definitely pain associated with the recovery from GBS/CIDP, although the degree can vary. In my case I was able to off pain meds once I started recovery, but the pain is still there. I still get brief zings which I describe as like being slashed with a knife, but I don’t take anything for it. I am a year and a half out of the hospital and am used to it, which I take (correctly or not) as a sign of healing.

      Moving a patient during the recovery phase can be painful. Even in a metropolitan area, where more such cases will be seen, some caregivers are oblivious to the problem of pain in a recovering GBS patient. You should copies of the guide for therapists available from the Foundation to give to the people who handle the patient. I am ery familiar with clueless CNAs who don’t like to be told by patients how to do things. I suggest you have a talk with the manager of the unit in which the patient is being treated to discuss the pain issues. Go armed with a couple of copies of the pamphlet so you can leave one. I think you can just print it out from this website. I hope it gets worked out!

      Oh, and if you don’t already have Parry and Steinberg, get it.