GBS pain advice needed

    • Anonymous
      September 14, 2006 at 12:27 am

      I’m a 10 month survivor of GBS. After I was released from the hospital I was still very weak but I got better and was feeling good. Now I am in alot of pain and at times my body from my chest down goes either numb or I feel needles. I also wear out very easy and any kind of heavy activity causes nausea and vomiting. My family doctor has me on 6 percocet a day for the pain but he only thinks its muscular. I’ve tried filing for disability but it seems the goverment doesnt recognize GBS as a worthy problem. Both of my hands and feet feel as though Im wearing something thick on them. I also tested positive with Epstien barre virus while in the hospital. Does anyone have any advice for me of what to do?

    • Anonymous
      September 14, 2006 at 7:30 am

      hi troy & welcome,

      you are over doing it, stressing your body, & therefore your gbs residuals are acting up. you must rest much more lying down, totally relaxed. percocet will not do the job plus it constipates. many of us take neurontin, a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorbtion max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 14, 2006 at 9:48 am

      Thank you Gene for your quick responds and advice.
      I will talk to my doctor and try and get my meds changed and hope it helps me as it does you.

    • Anonymous
      September 14, 2006 at 1:19 pm


      There have been threads about disability as it is recognized by SSI. You might try doing a search.

      Gene is one of the best for med advice. My usual advice is REST, REST, and more REST!!! Might as well get into the habit of it now as chances are you may suffer from fatigue the rest of your life. It’s okay – we are here for you.

    • Anonymous
      September 15, 2006 at 4:36 pm

      I am a 10 yr survivor of GBS. I tried neurontin and it never worked for me, I currently take 2 percocet a day which helps me tolerate the pain. Remember, every one is different and responds differently to these drugs. You have to experiment to find what works for you. Good Luck!