A newbe here w/ questions

    • Anonymous
      June 6, 2007 at 9:39 pm

      Hi all,
      I’m rapidilly recovering from GBS and thank eveyone in advance for your support and advice. Here are my Questions:
      1. Is there a list of questions I should be reviewing with my doctors about my treatment and recovery (ie PT/ Pain issues etc)
      2. Is it normal to have serve charlie horses in the muscels as the nerves regenerate?
      Thanks Again
      Rochester NY:)

    • Anonymous
      June 6, 2007 at 10:38 pm

      Hi Chris and Welcome!

      I think you will see many that have been in the same situation as you are in now. The cramps have been common. Stretching, nutrition and rest all will play a part with the cramps. Some of the suggestions you might laugh at but putting a bar of Irish Spring Soap under the covers near your feet have been suggested and also rubbing Vicks Vapo Rub on that area. Some have had good results with different types of mineral waters or Qunine Water which they added flavoring to so it was not too unpleasant of a taste. I am sure there will be others to post and give you some of the details.

      If you are having pain after PT discuss this with them. They can change off to other exercises and lessen the amount you do at each time. Also water therapy in a heated pool (94) might help with the cramps and also putting weight on those weak muscles until the tendons and ligaments stretch. If the pain does not stop then it might be necessary to talk to your Neuro. You will learn to speak up and ask more questions. That is what they are there for and so are we! Congratulations on the speedy recovery but make sure you get rest that is what the nerves need to heal. The muscles need the motion. Listen to your body.

    • Anonymous
      June 6, 2007 at 11:14 pm

      Welcome Chris!

      Kitt said it all I think. Regarding pain ….. its not worth trying to suffer through nerve pain, so if it is bad speak to the doctor about medication specifically for nerve pain. Rest at the moment is probably one of the best things you can do. Recovering and wanting to do so much because you havent been able to do so in the past is normal, however when tired you do need to stop as it can be counter productive to push too hard.

      *Edit* Forgot to mention, PT is very important, are you doing that at the moment?

    • Anonymous
      June 7, 2007 at 12:48 am

      Hi Chris and welcome.

      1. No pain no gain is counter-productive in therapy. Hopefully your PT will have had experience with GBS/CIDP or speak with your Neuro. about how your PT should go.

      2. Like was said quinine pills help with those charlie horses. Tonic water has quinine too, you can try that also.

      Are you on Neurontin/Gabapentin or Lyrica for nerve pain?? Sometimes the other pains we go through during recovery need a normal painkiller, I have been taking Tramadol as needed for 3+ years now.

      Welcome to the family, hope to get to know you better.


    • Anonymous
      June 7, 2007 at 8:44 am

      Hi Scott, Welcome to The Family. For cramps and charlie horses, eat bananas, drink alot of filtered water, increase salt intake and try eating pickles(i was just talking to my pt about this yesterday). Please don’t over do things during your recovery. GBS=Getting Better Slowly. Sometimes we tend to push ourselves beyond what our nerves can handle, the downside to this is the chance of relapsing. Limits are needed in recovery. Its the hardest thing to remember and do but its better then going through the paralysis again. A positive attitude is really important also. Just as going through the 5 steps of recovery-depression, anger, denial, acceptance and getting on with your life, not necessarily in that order. Ask all the questions you want, and feel free to vent when you need to-about anything. Keep up the fight for recovery. Take Care.:)