frost bite like pain and gbs

    • Anonymous
      July 29, 2009 at 2:07 am

      I had GBS 7 years ago and am a possible cidper. the first symptom of gbs for me was extreme aching pain all over my body from the tips of my fingers down to my toes. I remember describing it as if my body was thawing from frost bite. it was the worst pain I have felt in my life. I went to the hospital and they just said I had the flu but gave me a shot of demoral and when that didnt touch it they gave me a shot of toradol and that fixed it instantly and then I went home. until the next day it began again and then the ascending paralysis began. I keep hearing that pain is not a factor in GBS but that was unmistakably correlated with it. did anyone else experience that? just curious.

    • Anonymous
      July 29, 2009 at 3:25 pm

      My pain didn’t start until 1 1/2 months after my first paralysis. It has stuck around ever since and increases during relapses. Everyone is different with this stuff. Just like fingerprints-no 2 are alike but they are still fingerprints none the less. Take care.

    • Anonymous
      July 29, 2009 at 11:30 pm

      heres a funny one for abnormal pain. I was just at my daughters friends house picking her up and I went to the door. all of sudden i felt something sting me and I frantically asked can I come into your house, something in my pants just bit me. I need to take my pants off. I ran to one bathroom and it was locked and then I was jumping around saying hurry hurry wheres your bathroom something bit me and its shooting down my leg. I need to get it out I think its a spider or bee or something. I was frantic. I went to the bathroom and there was nothing there. no bee, no bite mark. it was some crazy nerve sensation I guess. I came out of the bathroom and said I think I shook it out and lied and said that there was a bite mark. i was soo embarrassed. ill get over it but that was a new sensation for me. I am sure that grace is not an all around attribute for gbs and cidp.

    • Anonymous
      July 30, 2009 at 5:25 am

      My boyfriend had the same thing happen to his back. He asked a neighbor to get the stinger from his back because of the bee that stung him but there wasn’t any bee that bit him.
      He has major back problems that is affecting his nerves.


    • Anonymous
      July 30, 2009 at 11:39 am


      I am 26 years post GBS and I still get the “stingers” It is like something bit me or sometimes as if I just got a needle shoved in me. It hurts! I find if I rib the spot right away it will help somewhat.