Confused & Frustrated

    • Anonymous
      June 1, 2006 at 1:27 am

      Hello to all!
      It had been very interesting and heartwarming to read so many of your postings. It is great to know that there is such a great support network out there!

      I have had two attacks of GBS. My first attack was at the age of 10 months old as a result of a DTP immunization. I suffered paralysis and was on a respirator. It took forever to figure out what was worng woth me, but eventually it was diagnosed as GBS. My second attack was last July at the age of 33. I started with the the numbness and went to an ER. I specifica;;y asked about GBS but was told that was rea;;y not possible becase reoccurrence was virtually nonexostent. They referred me to a neurologist and sent me home. After seeing the neurologist about 3 weeks later I was diagnosed woth GBS. I was very fortunate that I did not have any breathing problems. Just the numbness and foot drop in my legs.

      Here is my current problem. I am still suffereing from numbness, tingling, pain and exhaustion almost a year later. I am taking Lyrica 75mg 2 times per day. It does seem to help slightly but nothing is touching the extreme exhaustion I am feeling. My neurologist seems to feel like I should be better, but I am not. I can walk but can only stand for a few minutes. I sit to do almost everything including dishes, cooking etc. My ankles are extrememly weak and I am prone to turning them almost daily. At this point this nolonger hurts it just makes me stumble and fall! Does anyone have any suggestions? I hate to complain when I know that so many have it so much worse than I do. However I feel like I am loosing my mind and do not know where to turn!

    • Anonymous
      June 1, 2006 at 6:48 am

      Have you gone for PT? I had a difficult time walking for several months without a walker then I went to using a cane since I couldn’t trust the steadiness in my legs. PT helped me with coordination which in tunr helped me walk more building up my leg strength. I was taking 3600mg of gabapentin and tramadol and percocet as needed. I felt less fatigued on the percocet but of course being a narcotic, I couldn’t stay on that. The tramadol isn’t bad for muscle pain and doesn’t make me fatigued, but that also is a mild narcotic, however the neurologists are more apt to dispeense that liberally. T

      The thing that has helped me the most was my husbaand’s common sense. When I am physically active, he has me set a timer and every hour, I must put my feet up and drink a glass of water and rest for 15 minutes minimum. It has worked better than any meds. I am able to last a lot longer and take less medication, I also have less fatigue when I stick to that schedule. We, as a population generally don’t drink enough water, I feel noticeably less tired when I do drink at least 6 glasses of filtered water (tea and coffee don’t count as they are diaretics).

      Hang in there.

    • Anonymous
      June 1, 2006 at 7:21 am

      hi ames & welcome,

      neurontin for pain. for the most part nerves ‘heal’ on their own schedule. pushing yourself will only slo the process. rest much more lying down. use energy management, think it out before doing anything. do i need/want to do this? how is the easiest way? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 1, 2006 at 7:27 am

      Many including myself have had expreience with neuoroligist indicating that we should be better. But we really are not better. Here is an article that gives support to the residual fatigue and pain.

      Residual fatigue & pain is finally documented thx to dr. parry

      here is a link to that article..


    • Anonymous
      June 1, 2006 at 4:17 pm

      I have to say the above link to the article by Dr. Parry is a godsend of information for us. Between fatigue, depression, denial, etc., life sure gets difficult some days. Neurontin wasn’t for me and I am looking at trying the new Cymbalta (if I can afford it).

      Hang in there and visit here often!