• Anonymous
      August 23, 2010 at 9:46 am

      It’s funny about the need for rest. Being a chronic procrastinator, I excel at resting. But don’t we have to build back our muscles as well?

      Also I experience a quiver/vibration inside my legs sometimes when I walk. I used to feel it all the way up my torso. Does anyone else feel that? One time when it was very strong my wife asked me why I was shaking. I said I had to lie down.

    • Anonymous
      August 23, 2010 at 1:13 pm

      You do need to rebuild your muscles also. But it is vitally important that fatique is the big factor. If you overdo it can set back your progression.
      Just remember baby steps. Each one gets you closer.

    • Anonymous
      August 23, 2010 at 4:29 pm

      In my case rest is much more important then strength building. Get your rest and your body will tell you when you are ready to strenghten.. Strength does return. I find I must rest or I begin getting numb and also get spasms and quivers. And my brain just shuts down.

    • Anonymous
      August 24, 2010 at 1:40 am

      I wanted to spend some time catching up with all of you this evening, but I keep falling asleep as I read and post. Tired doesn’t even come close. We all need our rest. At 5 months I was able to stop the 2 naps a day, graduating to 1. Now I “power nap” in my classroom during lunch, and sleep when I get home. Hubby is not complaining about “cereal nights”, or those frozen dinners you heat up in the microwave. Take it easy – sleep, and then sleep some more. I hope it will have good results.

    • August 24, 2010 at 8:58 am

      I agree with all the posts. However, i found at physio that my exercises were getting too easy as i healed. I started to push myself a bit harder, adding more weight, reps, time, etc. It hasn’t killed me (yet).

      The benefits have been really good. I feel mentally like I am working at a better pace and I have been sleeping wonderfully at night.

      I understand this is what works for me and that your case is different. I just found that my mental state was dictating how hard I could work rather than my body. Once I realized I was capable of more I went for it and I feel that I am doing better this way.

      I hope you can all find your strength today and forever

    • Anonymous
      August 25, 2010 at 12:23 am

      I do find that if I do my PT early in the morning I do not fall asleep as often as if I do not do my pt early in the morning.

      Today was a bad day emotionaly so the fatigue was stronger on me as well. Without getting emotional about it now, it all comes down to again I just want my life back. Please someone give me my life back

    • August 25, 2010 at 7:43 am

      [QUOTE=jasonscamera]I do find that if I do my PT early in the morning I do not fall asleep as often as if I do not do my pt early in the morning.

      Today was a bad day emotionaly so the fatigue was stronger on me as well. Without getting emotional about it now, it all comes down to again I just want my life back. Please someone give me my life back[/QUOTE]

      I hear ya jason! I have days when I feel very emotional too. Have you had any progress yet? I hope so. If you are on to PT then I think that you must be. Please count every step as a giant leap; sometimes little steps are all we get.

      I’m sending you my wishes for a better day today:)

    • Anonymous
      August 26, 2010 at 10:00 pm

      Hi Mark and all: As I understand it, muscles cannot be rebuilt until the nerve damage heals. We get better and stronger to the extent that our nerves regenerate-for those of us with significant nerve damage excercise and PT will not regain what was lost. If you are fortunate in the amount of nerve repair your body creates you can work at rebuilding strength. But until the nerves heal excercise will not create the strength you are looking for. The residuals, pain, fatigue, tingling etc. come from the damaged nerves and are signs that you need rest more than anything. Patience is important in recovery from GBS because there is little anyone can do to speed up the nerve regeneration. Nerves typically take two years to heal, which is why many docs say what you have after two years is what you have forever. I have seen exceptions to this, but it is based on the need to give the nerves time to heal. So-be patient and don’t push past your comfort zone-for GBS that is simply counterproductive. Jeff

    • Anonymous
      August 27, 2010 at 5:46 pm

      My nerve tests show no sign of increased activity. But I am still on a PT strenghtening program. You just have to very careful of the exercises you do. You don’t have feelings and to hold something tight is dangerous. I do weights and leg lifts etc. Can’t us my bowflex tension bars because of fear of injury.

    • Anonymous
      August 31, 2010 at 12:22 pm

      I had another milestone at my last appt. with my Neuro August 12th. He tested my reflexes and they have returned. That happily surprised him. He had been telling me all along that they would likely not return. He has me set to go back to work now for Sept. 14th, which is the extent of my sick leave. I wasn’t sure why he put me on two more weeks, but after reading Jeff’s post above, I guess he wanted me to get the maximum rest possible, for me 90 days. He also gave me a schedule to get off of Neurontin (gabapentin). So I’m off that now too. I was up to 900mg /3 times a day with a 12 hour time release 10 mg oxycodone. The 12 hour time release oxy was great for pain except it gave me hemroidal bleeding. I would have to take two Colaces, 4 Senne’s and have 3 fruits a day or I’d have to use a suppository. And still it could hurt and bleed.

      So I’m glad to be off all meds. I only have had some pain in my joints and muscles. Especially if I put pressure on them. When I had to crawl under the bed to get some boxes. Being on my elbow’s, knees and bending my knees all the way was quite painful. If I just take it easy, I don’t miss the paid meds.

      I have also been able to walk further. I have walked the dog up to two miles, but then I would take it easy the rest of the day (couch potato style). I have gotten really good at using the cable box DVR. By the 14th I’m going to be sick of TV and need to work.

    • August 31, 2010 at 8:12 pm

      Hi Mark

      Thanks for the call and the update. I’m glad that you snagged some more rest time. I have been given the green-light until at least january. I hope I wont need that long but who knows?

      I am looking forward to next week when the boys go back to school. The house will be quieter, so will the town. I should have my home studio up and running (still waiting for one part) and will have the time to mess around with it to get past the learning curve. Still waiting for my left hand to loosen up so I can play a little. I haven’t had the heart to practice because it sounds so bloody awful.

      Good for you for getting the pharmaceuticals out of your system. I’m not sure if my meds are actually helping, but I take them anyway. A couple of beers seems to be a better fix if it weren’t for the big belly that comes from brewskis.

      I still say that distraction has been the best medicine. I’m glad that I can be easily amused:p

    • Anonymous
      September 1, 2010 at 11:24 am

      When I got off of Oxycodone I actually did it by mistake. I forgot to take it two separate times and didn’t notice a difference in pain level. The extreme disconfort in bm’s was extra motivation to try without.

      Getting of the gabapentin was much more planned.