Recovering from GBS, highs, lows and confusion

Posted , 7 users are following.

I was diagnosed with GBS on July 19 and spent a week in the hospital.  I had a mild case, only affecting my lower extrmities.  By August 10, I was walking pretty independently.  My gait has improved with PT, but the sensations in my legs seems to change.  Some days they feel like they're getting better, some days they are worse.  They often feel large and swollen, but they aren't.  My ankles feel like there are rubber bands on them.  My doctors think my recovery is "remarkable" and this feeling will gradually subside.  I'm going back to work Tuesday, excited and anxious.  Has anyone else had these sensations? 

0 likes, 20 replies

20 Replies

Prev
  • Posted

    How is your return to work going? It was tough for me at first but got better with time.
    • Posted

      It was a little fought the first week but this week is a little better. I had to catch up on 4 weeks of school but it's coming. Im able to sit and stand when I need to. I don't know how you ever stood all day! I am almost 2 months since the onset and I see a little progress everyday. I did realize I can't step over things. I told the kids they better stay out of my way when they're sitting on the floor or I just trip and fall on them, lol! Thanks for checking in.

    • Posted

      Tarhealing,

      Hello again I hope you are still doing good. I have another question if you don't mind. My legs have been improving slowly I am almost to 3 months and the burning/tingling is no longer constant and my strength is better than last month I can lightly jog again. I still have muscle twitching but doesn't bother me as much. My qustion is did you have fatigue. For the past week the fatigue has been crazy. I am tired throughout the day like I have never experienced before. Did you have this and did it get better?

    • Posted

      I did get fatigue. It would really tank me. That part will get better and better with time. But when I would over do things (and that was hard to gauge at times) my body would respond with extreme fatigue and sometimes increased muscle twitching then it would get better again. Sometimes it would only last for two or three days but sometimes I would feel kind of decrepid for a couple of weeks. For instance, let's say I had done a little yard and lightly jogged. I might be able to do that on some days but sometimes my body would respond later with extreme fatigue where it felt shaky inside (so fatigued) and exhausted. Sometimes after work I would just want to come home and collapse on the couch and get take out. I wouldn't even feel like I could go out to eat or stand up to fix dinner. Everyone feels tired some days but I would feel fatigued and exhausted and not feel like I could push thru it. It sounds like you are doing so much better! Isn't it weird when you feel so much stronger, keep moving forward then your body sidelines you by not just being tired but being overwhelmingly fatigued? I learned to listen to my body and back off a little even when I didn't really want to then I would still mess up when I felt better. As an athlete, I think I was always used to building back and pushing myself. My fatigue response did get better with time and my body got where it would just be the normal tired again after activity. It can still happen to me now but it's less likely and takes more to cause it. Lighter twitching too. I would like to run another longer race. Last time I tried to up my miles, I was experiencing that fatigue again. I can do 3 miles fine (4 days a week) with weight workouts so I've been sticking with that and I work 30 hours a week. When I work more hours, I don't work out as much. I ran 3 miles yesterday outside with my daughter which was harder but I have no fatigue just extra twitching but still not bad. Hope your fatigue gets better! I know it's frustrating but I believe with time it will take more and more to reach that fatigue point. The people around me never really understood but it's hard to explain if you haven't experienced this. I was ready to put it all behind me and move on but it's not that fast.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.