Guillain-Barre Syndrome

[Zorana_a]

Hello everybody. As on many different forums about this rare and hard condition, i came here to share my story with all of you, and to ask for a piece of advice.
Well, where to start. This is not about me, it is about my friend. She is professional volleyball player and she was playing in Spain at that moment. She was traveling a lot, and she felt more and more exhausting, day by day. Anyway, one day she felt numbness and tingling in her legs and hands, and after that the pain. She was admitted to hospital, and 2 days later she wasn't able even to take a shower by herself. I read that many GBS patients were completely paralyzed to neck, but she wasn't. Anyway, she spent 4 weeks in the hospital, took treatment for lyme disease which probably caused her GBS which was discovered by doing LP. During that whole time she had only 5 days of IVIG treatment. She got out of the hospital, did two lighter trainings but didn't feel well. Anyway, when she came back home from Spain, she was 4 weeks home, getting treatment for lyme disease 4 weeks. After that, we went and had some light walks, she was able to walk normally, she just felt strange, still numbness and tingling and great pain in her legs and arms. That all happen in the end of January, begining of February. Since then, she really progressed a lot. From lighter walks she switched to running and excersises for muscles of her whole body, since being volleyball player. 7 months after that, she started with really heavy trainings and all. At first she had areflexia and after she began to have reflexes again, which is great. Now, the biggest problem is that she feels still great pain in her legs especially, and then in her hands, sometimes feels like her legs are sooo heavy and wants to move but can not do it that fast, her legs and arms are always so cold, she gets very tired lately, even though she is used to doing hard trainings. I mean, it is not like she is out of shape, it is completely opposite, but something is wrong here. I think her recovery was really fast, and she got out of hospital walking on her own two legs, without assistance of anyone or anything. I read that lot of people who have it, get out in wheelchair or something like that. Anyway, now she is taking some medication to help her nerves recover, but.... Something is not ok, as i already told you all. What most concerns me is that pain she feels. Is that normal? I don't know, maybe she started too early, i don't know.
Please, i would be very grateful if you could tell me what to do, how to help her?
Thank you in advance.

[mariono]

Every case of GBS is different, so no-one can really tell you what is going on. I got GBS in January and it took about three months to walk again. I am also very active and wanted badly to get back to my dancing and Gym. I still have times when I get very tired and sore, but I keep on. I know they say you should also rest, but I have a theory that if you don't use it you lose it. But tell your friend to listen to her body and do as much as she can without straining. If the pain is still severe, I think she should go back to the Neurologist.