GBS residuals

    • Anonymous
      April 27, 2007 at 12:37 am

      Hello all,

      I’m Don, the husband and caregiver for my wife, Fran Chalfant, who became ill with GBS at the beginning of July last year while on a trip to England. She had a serious case of it, became paralyzed in all four limbs but has been making an encouraging though painful recovery. With a Zimmer frame, she is able to complete a hilly circular four-block walk outside our house that I would guess to be approx. 2/3 mile. Nevertheless, pain continues to be a problem–hands, feet, etc. throughout the body at times like the present. Her neurosurgeon has given her a prescription for neurontin as needed, but she only takes one or at the most two tablets a day (300 mg. tabs) for fear of side effects. Yes, pain and finding an acceptable way of dealing with it is a problem.

      So also is the oujward skewing of her fingers. Splints have helped with the extension of the fingers, but haven’t been effective with the skewing. Does anyone have some advice to give?

      The particular problem at the moment is swelling of her right ankle. I recall someone recently gave some advice about ankle swelling, but now when I need that advice I cannot find it. Please help–at least give some understanding how at difficult moments like this you get through another day.

      You’re all such wonderful and such courageous people.


    • Anonymous
      April 27, 2007 at 6:09 am


      Your wife can take a lot more neurontin than one or two pills a day!!! If she is still having pain, then I would increase the intake of the neurontin. I take 4 (800 mg each), tablets a day ……3200 mg. with no bad side effects, except for making one a little bit sleepy sometimes.:) So, increasing the neurontin wouldn’t be a problem, I wouldn’t think. I also take Vicodin, which Really helps with the pain!!

      You asked for advice, so this is just my “take” on it, as far as my own personal experience with taking all this prescribed medicine for the GBS residuals that we all have to deal with. Good luck and welcome to the forum>:)


    • Anonymous
      April 27, 2007 at 10:13 am

      Hi Don, Welcome to The Family(to Fran, also). as Per said, she can increase her intake of neurontin with her drs approval of course. she needs to find the magic recipe for her own comfort. and she needs to take it religiously everyday, it can take up to a few weeks to build up in the system to be effective, but most people feel the relief earlier. i take 2 doses of 600mg and 1 dose of 900mg at bedtime, and might have to boost it soon. it isn’t one of those type of drugs that you can take only on an as needed basis, it needs to be taken everyday to avoid possible side effects. a larger dose may make her sleepy at first, but if it is raised slowly over a week or 2 it is easy to get use to. pain control is really important to a gbs survivor. its great that Fran can walk up and down hilly walkways, and for that distance, that in itself is a major gain. as for the swollen ankles, put them up higher then her heart as she is resting or sitting with them elevated will help alot. braces for the hands help, the trick i use is always having a spongee in my hands. i do squeezing exercises while i’m sitting around, laying around, i never have idol hands. i have relapsing/remitting cidp, and with every paralysis/weakness event i have i get out my spongees and make sure i have them in my hands while i’m resting. i got mine from my ot person, but they can be easily made at home by buying a pack of spongees and cutting them to the right length to fit in her hands, and if they aren’t thick enough just tie two or more together until a comfortable spongee is made. you can also exercise the hands with playdough, anything to make the fingers work is good, just don’t let her overwork the muscles. pinching exercises using either spongees or playdough will improve flexability and fine motor skills.
      Again Welcome to the Family, and please feel free to ask any questions or just vent if and when you need to. Give Fran a Big Hug for me and tell her to Keep Up The Good Work! take care.:)

    • Anonymous
      April 27, 2007 at 1:54 pm

      I am going to agree with the others here that she needs to take her neurontin on a regular schedule and get a dosage built up in her system and she can take more. When I first started I was told to start with 300mg – 600mg and take that for 2 weeks before increasing beyond 600mg a day. Then increased to 900mg for a week and then from that point on I was ok to increase an addition 300mg every 3-4 days. The main thing for me was I got really tired when I increased but after 3-4 days of that dosage the tiredness wore off and that is how I knew I was ok to increase again if needed. If the tiredness did not wear off after 4 days then that is one way to know you have reached the max your body will allow so you would then decrease by 300mg and stay at that dosage. It needs to stay in your system to so taking 1x a day is not optimum. For me anyways, I take 3600mg a day (1200mg 3x a day) and I have no problems. Also, if she is splitting pills (ie, cutting 600mg pills in half) then she needs to take the split pill with her next dosage as neurontin does not stay good after split for very long.

    • Anonymous
      April 27, 2007 at 2:03 pm

      ditto everyone else. she needs way more neurontin. not perfect, but it is one the safest pills to take.

      gene [not at home]

    • Anonymous
      April 27, 2007 at 10:13 pm

      Hi Don

      Her medication needs to be looked into, it’s always going to be an up and down situation as it will change with her recovery but as long as you both work with her Doctor you hopefully can get a pain mgmt regime that suits her. Side effects may happen, may not, but she has to weigh that up with the pain she is experiencing. I had very bad swollen ankles and lower legs when I initially started sitting in a wheelchair right through to walking and all I was told that could be done was look at how much ‘up’ time I had vs ‘rest’ time and the longer I was up and moving the more that the swelling subsided but it did take time. Hope this helps 🙂

    • Anonymous
      April 28, 2007 at 10:34 am

      Ditto with the neurontin! I have been taking it for 5 years now, the first 2 years at 3600 mg a day, 1800 mg a day since then. I haven’t noticed any side effects, except for fatigue. But I now believe that to be more from my muscles that do work having to work harder for the ones that don’t. I have found that if I can sleep 10 hours per night it also helps with the pain. I used to have swollen feet & lower legs the first 2 years, but that gradually got better. As for her hands, use them in any way possible, after 2 1/2 years my hands came around so much. The are not normal, but I rarely even think about them anymore, & can do just about anything I need to do with them.

    • Anonymous
      April 28, 2007 at 2:51 pm

      Also with regards to the hands, I agree with Pam but its important to find some activities to do. I would suggest trying puzzles. If she cant grip very well there is nothing wrong with doing kids puzzles with the big pieces and has her grip and coordination gets better the you can decrease the piece sizes. This has worked wonders for me.

    • Anonymous
      April 28, 2007 at 9:26 pm

      Neurontin is not a pain killer like you would take for a headache. It is a nerve pain blocker. It works through your nervous system.
      The drug needs to be in your system on a 24 hr basis to be effective.
      Taking 1 or 2 pills a day cannot be very effective.
      Nate takes 1500 mg a day and that is even low compared to what some of the others here take. Sometimes I think he needs more.
      He also takes Vicodin frequently when his back and legs hurt or his head.
      He has not had any noticeable side effects.
      Trudy, Natesmom