• Anonymous
      October 26, 2008 at 6:44 pm

      I got GBS about 2 months ago. I am still suffering with terrible pain in my legs. They tingle and feel crushed at times. My Dr. has me on Methadone which does not help and it scares me to have to take it. I am sooo scared of contracting this again. I do not drive so I have to have a friend or do the mass transist thing. I am glad there is a site like this so I can have a “sounding board.

    • Anonymous
      October 26, 2008 at 6:58 pm

      Sherry, did you get any treatments for your GBS? Lyrica is what I take, there are other drugs that others will tell you about. I also am scared of contracting it again but that fear has lessoned over time from what I have learn from people on these forums. Ask questions and they will try to help.
      Nice to meet you

    • Anonymous
      October 26, 2008 at 7:49 pm

      Hi Sherry,
      Welcome to our site. I’m sorry you are suffering with GBS, and I hope you will find answers and support, and see improvements in your condition.

      My greatest pain was in the first few months–mostly my legs, feet and back, but as the months passed the pain lessened. I’m glad your doctor is helpful, and that you have some relief from the pain; we all know how bad it gets. 🙁

      I have found a few other coping strategies which help to lessen the pain. I use a foam mattress to sleep on now, which warms my body and bones and lessens the icy chill I get in my feet, legs and bones. It also cushions my muscles better, so there is less pressure on them and therefore, less pain.
      I often sit on a cushion to help minimize back and leg pain, and use a soft foam footrest to keep my feet warm and lesson the chill and tingling. I use foam insoles in all my footwear to cushion the impact on my feet and lessen the foot cramps and burning, tingling pain. I use acetaminophen for my GBS pain in general.

      It helps to keep my routine as normal as possible, so I don’t atrophy my muscles and add to the cramping, or worsen the sciatica effect in my lower spine. I don’t drive anymore either, so I have only my medical rollator to go places and do my errands, etc. ; I understand how difficult this is and how limiting it is. :rolleyes:

      Just a bit of advice: Don’t overdo, because that makes things worse, and the pain gets worse. You will get better, but it takes time to heal. Some things have to change in order to cope with what has happened, but as you adjust, life can get better again. 🙂
      I pray for your ongoing recovery; God Bless You!

    • Anonymous
      October 26, 2008 at 8:35 pm

      I agree that we should not overdo exercises or activities of daily living. We need to space our tasks regularly. In order for us to cope what happened, we need to accept what happened. The mechanism of ” denial” doesn’ t work as part of recovery. – – Eden;)

    • Anonymous
      October 26, 2008 at 8:53 pm

      Welcome to this site and this on-line family. There are many discussions of pain medications on this site. the most important point is that neuropathic chronic pain is different that surgery or trauma associated acute pain and that sometimes it needs a different approach including different medicines. the ones most used are gabapentin (Neurontin) or its newer, fancier, and more expensive version Lyrica. These help the burning, crushing pain sometimes better than methadone or other narcotics. Sometimes people need both, but it is definitely worth asking your doctor about neurontin or Lyrica.
      WithHope for a cure of these diseases

    • Anonymous
      October 26, 2008 at 9:09 pm

      Sherry Welcome! Are you at home already? Sounds like you are doing very well. I agree with the others to work with your Doctor and share your findings with them. Keep the communication lines open. I did have the pain as you did and it slowly gets better but you will notice changes along the road to recovery. I have the burning now and it does not last long. I have back pain but I have found how to get around that by resting often and then getting up and doing more things. REST is the KEY! My pain changed from day to day and even morning to afternoon. I always have had the needles and pins in my hands and feet but not bad enough to have to take any meds. I do notice that many many people here are not as fortunate as I have been. But we all share so many similarities. I felt changes all the time and I kept a Journal to see how I was really progressing. The muscle cramps, the zings and zaps, I took all those things as good indicators of change and healing. Hopefully you can get some relief and then start to see how you progress not week by week but maybe month to month or season to season. November 6th will be 3 years for me and I still have more healing to do but I am glad I found this group! They have kept me thinking very possitive! Hope they continue to do that for you too!


    • Anonymous
      October 3, 2006 at 12:03 pm

      Thank you to the people who worked so hard to fix the problem with the Forums.

    • Anonymous
      October 3, 2006 at 1:47 pm

      Yes thank you for the minimal downtime too. May we inquire about the two weeks+ of threads that are missing?????

    • Anonymous
      October 4, 2006 at 10:10 am

      During routine maintenance by the server company we experienced a corruption of @ two weeks of threads. We appolgize for the loss.

      Thank you,

    • Anonymous
      October 4, 2006 at 5:21 pm

      Thanks for your prompt reply 🙂