Question regarding GBS & pain medication

    • Anonymous
      October 18, 2006 at 12:50 pm

      Hi everybody, this is my first post, so I will give some very quick background information. I contacted GBS in August 1995 at age 25 after having a stomach virus and losing almost 45 lbs in 2 weeks. I had total paralysis from my legs up to my waist, and weakness above. After leaving the hospital I re-habbed for 2 weeks, and then continued rehab at home. I eventually totally regained the ability to walk. I had the same neurologist from 1995 until this year, when my insurance changed to one he does not take.
      I’ve had constant pain in my legs since 1995–it’s worse when I get a cold, but it’s always there. Although I mentioned this to my neurologist several times over the years, he did not really believe in pain medication except motirn, which didnt help, so he tried several “nerve” treatment type drugs–topamax, nortriptalyne (sp?), etc. I always had a bad reaction to these and had to stop taking them.
      Recently I had a bad bout of asthma (was on a respirator, ec) and because I get severe headaches from Prednisone, was prescribed 2 weeks worth of Percocet (taking 2 a day). After a few days the difference in my leg pain and my quality of life was tremendous. After 11 years I finally remembered what it felt like to not be in pain. And I was able to care for my 1-year old daughter much better.
      My question is, I have a visit with my primary care physician next week, and I’d like to raise this issue with her. But how do I mention this without sounding like I just want “pain medication” for the heck of it? Some doctors do not even believe that there is residual pain from GBS, and some don’t like to prescribe pain medication due to the fear of addiction.
      I’m sorry for the lentgh of my post! If anybody could give any advice I would be really grateful.:D
      Thank you very much!

    • Anonymous
      October 18, 2006 at 1:41 pm

      Hi Bill and welcome,

      You mention you had reactions to several drugs, you didn’t mention Neurontin/Gabapentin or Lyrica/Pregablin which are for neuropathic pain. Those are the two primary drugs we all take for our nerve pain. I take Lyrica and Tramadol for my pain and this combination has worked the best for me. Maybe you can ask about thos two for Neuropathic pain?? Good luck and keep coming back.


    • Anonymous
      October 18, 2006 at 3:28 pm

      hi bill. maybe you should print out some of the postings from this website, including jerimy’s medication suggestions and it will prove to your primary that most of us have moderate to severe pain from our residual gbs. i take vicadin when i can’t stand it anymore and i am 5 years post gbs. let us know what your primary gives you for the pain. stay well. 🙂

    • Anonymous
      October 18, 2006 at 9:52 pm

      hi guppy & welcome,

      many of us take neurontin [gabapentin], 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
      October 22, 2006 at 8:59 pm


      You said you were afraid of what to say to a doctor about pain to get pain relievers.

      I went to a neurologist and he was afraid to give me medication on a regular basis so he said I had to go to a pain clinic. I was so mad but there was no choice. So I dragged my heels and went. ( I had gone to a pain clinic about17 years before for something else and it was so much work and frustration).

      I am so happy I went. I was on Vicodine and she mentioned methodone and I was in a panic. I wasn’t an addic. After explaining back and forth, I found that methodone is a stronger pain reliever and she would leave me on 4 Vicodine a day. I would call in for script each month and every 3 months I had to come in. No problems, so far.

      My regular GP didn’t want to give me pain relievers on a regular basis either.

      I hope you have good luck on getting some relief.

    • Anonymous
      October 22, 2006 at 11:19 pm


      This is such a difficult one ….. As you said, some doctors are willing to listen and try to understand and maybe act on what you’ve said, however others are the opposite, and its that attitude I think you are trying to ‘avoid’. Going to the doctor and trying to explain is such a hard thing, well, at least I find it that way. I have left doctors offices feeling beaten, despondent and depressed. I think what I’m trying to say is, that if this does happen, keep trying somehow – maybe it is going to someone else or, as Judy mentioned, perhaps asking if you could be referred to a pain clinic. You have seen first had the wonderful quality of life that can be had when you aren’t in such pain, its worth a [B]passionate[/B] plea to your doc.;)

    • Anonymous
      October 23, 2006 at 12:16 pm

      Hi again everybody—Thanks so much for all of your advice and help, I really appreciate it. I have my appointment with my primary care physician this Thursday. I’ll try and be assertive with her and hopefully we can take a few minutes and discuss it (you know how doctor’s visits are nowadays)– and I’ll let you know how it goes~~
      Thanks again! 🙂