Recovery from GBS

    • March 1, 2007 at 3:05 am

      It has been 15 months since I got GBS and I have been recovering since I got out of the hospital last April. I haven’t seen a doctor nor taken any medicine for the past 6 months. I can walk a lot better especially over rough ground and lift my legs higher, etc. The worst thing is that my feet ache really bad at times and they constantly feel very tight. Although they always feel half asleep, sometimes they go completely asleep and I have to move them a lot to wake them up again. I get cramps in my calves very easily and sometimes I have to jump out of bed to put weight on them. My fingers still have pins and needles but don’t ache like my feet do. My neurologist told me I should have recovered by now the last time I went but he was wrong. I think that once nerves are damaged, it is very slow and difficult for them to recover. Luckily for me I don’t notice fatigue like many of you do. I do have to sit down and take off my shoes when my feet hurt really bad. I have an adjustable stool that allows me to sit while I do stuff in the kitchen although about half the time I stand up in the kitchen. I drive quite well and can find the clutch and brake better with my feet than before. GBS is a pretty terrible disease and sometimes I feel very bad that I am not as good physicaslly as I used to be. Sometimes I can completely forget about the GBS and other times it really bothers me. Some of you apparently have had worst luck than myself so I should be grateful I can get around as well as I can.

    • Anonymous
      March 1, 2007 at 7:47 am


      You are right this is a terrible affliction. Many afflictions are over and done after a short period of time and we resume our normal life. Even with GBS this is the case with many people. Doctors will say that you should be well by now and in many cases that is true. Yet, there are those that do not fit that paradigm.
      It has been very hard for me to accept that fact that 6 years post GBS I still have residuals and some healing does still occur. It has been and is a very slow process.
      Like you many do have residuals form GBS or effects that have not had time to complete the healing process. Residuals/healing do improve with time and do have times when they are more pronounced than others. Stress, illness, not allowing time for sufficent rest and in general thinking we can do things like we did before GBS contribute to more pronounced residual effects and in my opinion slow the healing process. Some say GBS means “Getting Better Slowly” which I am sure you have heard before. I am still working on going beyond survival. Much success in your progress. Look forward to hearing more from you.

    • Anonymous
      March 5, 2007 at 7:42 pm

      Yeah, GBS sucks! 😡

    • Anonymous
      March 13, 2007 at 3:22 pm

      I have been blessed with a mild case of GBS as it hit my feet. I have been out of the hospital for less than 3 months and already have seen healing from God.I went from a wheel chair to a walker to a cane and now walk on my own but still use my cane for assitance from time to time.
      The pain I have is in my lower back and with meds it is ok. Yes we are the blessed ones as so many suffer so long. I have been blessed with patience–calminess–faith–and humility. I feel this happen to me for a reason and within I already am seeing changes I have made in my thinking and attitude. May Gods blessing be with all of us and we one day will walk again and be healed.

    • Anonymous
      March 13, 2007 at 4:26 pm

      Hi Robert:
      I too got gbs in april of last year. I am 11 months and counting every day. I have the same foot problems you do. Lots of tingling and pain and my legs are weak. I can walk short distances and if I walk slow, it looks like nothing happened to me. I cannot walk fast or I look like I had one too many. I changed neuroligists recently and he increased the neurotin up to 3600 mgs per day and I take it morning, noon and night. I hope to get off it soon because it tends to make me sleepy. I have had others tell me to give it a year and a half to get better. I still have the fatigue and my age (70) does not help. Just wanted you to know others have the same problems and you explained my problems also.