recovery experience

    • March 16, 2017 at 1:41 pm

      Last September, I had a mild/moderate case of GBS. At the end of October last year, I was able to stand and start walking. Today 5 months later, my left calf is weaker than my right calf and I still experience pain
      in my left calf when I walk. I also experience back pain. I was told these are due to muscle atrophy since I was confined to bed for almost 6 weeks.
      I feel the pain I am experiencing is muscle pain rather than nerve pain I had last September. Has anyone had similar experience during recovery?

    • March 16, 2017 at 5:58 pm

      I have CIDP that hit really hard in December and early January. I still am slowly recovering muscle strength, but maybe I’m at 75% or so. I tire easily and I’ve found that my calf muscles in my right leg are significantly weaker than my left, and that they actually hurt.

      I think it is safe to say GBS/CIDP definitely atrophies the muscles and the rebuilding process is slow undertaking.

    • March 16, 2017 at 6:52 pm

      Hi BryanF,
      Thanks for your reply. I am just wondering are you left-handed? I am puzzled by my right calf much stronger than my left calf. I am speculating that maybe it is because I am right-handed. 🙂
      I read your other posts, specifically about recovering and PT. I too had numerous times pushed myself too hard on PT. Both of my legs felt weaker and I was scared that my nerve problem is back. I should remember to pace myself from now on. I can walk about 30 minutes without feeling too bad. Are you able to run now?
      thanks again

    • March 16, 2017 at 9:41 pm

      I’m right handed. Running, never did it before I became sick ; )

      I’m walking without a cane and back to work where I’m on feet for 8 hours. It still wears me out after a day of work, but I’ve been feeling stronger as the weeks go on. I’d say I’m 75-80% back to normal, but that last 20% is what returns one to “normal”…

      I think GBS/CIDP just weakens the muscles so, the recovery takes time. Add into the equation the time it takes to rebuild the myelin and of course, the possibility that some nerves were damaged in the process.

      My neurologist estimates it might take 5 to 6 more months to see where recovery takes me. At that point, we’ll see if there was actual damage to the nerves themselves.

      And, I feel the same way. As I fatigue, I worry that the immune system is once again attacking the nerves. But my measuring stick is this.

      -can I still feel hot/cold
      -can I pinch myself and feel it
      -can I feel texture
      -can I feel things with my toes

      When I answer yes to these things, it abates my fears of the return of the disease.

      So far, my ability to sense and feel is there and getting more sensitive each day. At this point, I really chalk it up to muscle fatigue and just thank God the numbness and motor control issues aren’t coming back! : )

      I’ve been pacing myself which does help. Definitely too much exertion at once sets us back.

      My goal though is to be back on the golf course by May, even if it means only hitting the ball 150 yards of the tee with a 7 wood.

    • March 17, 2017 at 1:22 pm

      Hi BryanF,
      It seems that you are doing really well. I also have my goal set in May, I hope my left leg would feel normal like right one.
      Good luck to both of us!

    • March 19, 2017 at 8:08 am

      Does cannabis use HELP when dealing with CIDP

    • March 19, 2017 at 12:08 pm

      Jutty, I think the jury is still out on that. You can use a keyword search here in the forums to read other threads on the subject. Try searching for “pot” “marijuana” and many will come up. Here is one of them:

    • April 13, 2017 at 5:53 pm

      Today, almost a week out from my second 5-day cycle of IVIG infusions, I’m feeling a return of some of the strength in my legs. Hallelujah! Because of the extensive nerve damage, especially in my left leg (conduction was down to 20% of normal on my test),I had already accepted that my legs and balance were permanently damaged. But suddenly I can walk halfway across a room without my cane, wobbly to be sure, but without feeling as if I’m going to fall. Fatigued, yes. That short walk was exhausting, and I’m going to be careful not to over do it. But I’m thrilled beyond words! On top of the first cycle of infusions getting rid of the worst of the nerve pains in my legs — well, I never expected this to happen! I hope every one of you will experience this, if you haven’t already. This is a dreadful disease, and I wish it could be wiped from existence.