Post GBS injuries

    • Anonymous
      April 4, 2007 at 1:51 pm

      Is it common to keep injuring yourself after GBS?
      Nate has pulled muscles in his arms, sprained ankles, injured his knees when they go out from under him and it continues.
      He stood up sunday and both knees went out, causing him to sit back down, just making it back into the edge of his chair.
      His right knee swelled and is very painful still. I keep icing it and its down some today but still very painful.
      Its very frustrating to him just when his leg muscles are starting to make some progress. He doesn’t even want to stand it hurts so much.
      I hope this doesn’t keep happening, but I’m afraid it might.
      Trudy, natesmom
      Nate, GBS diagnosed 1-06

    • Anonymous
      April 4, 2007 at 4:00 pm

      trudy, i agree its very frustrating, just when you thought everything was coming along. i have had many problems like nate is experiencing, with me its because i have weak muscles now, the nerves are not firing the muscles correctly all the time, thats how i see it anyway. i don’t seem to be able to feel the positions of my feet, i hit the foot of the couch alot! the painful part is the annoying shooting pains when i take a step. too bad they haven’t come out with super soft, lightweight, strong, slippers that won’t irritate the feet and will protect the toes from smashing things. as for the knees, it could be because the hamstrings are too weak yet, thats what my physio dr told me about my knee problems, thats why i’m in aquatic therapy, because i can’t do the landbased physical therapy to keep my muscles from atrophying anymore. nate is making great strides, don’t let these setbacks get him down. Big Hugs to you both.

    • Anonymous
      April 4, 2007 at 4:57 pm

      trudy. i’m 5 1/2 yrs. post gbs and still have almost constant accidents. since being diagnosed i’ve done the following: broke my leg, broke both little toes at separate times, tore my acl, dropped quite a bit of glassware on my feet and cut them (even through socks), stabbed my toe with a pair of scissors and constantly cutting myself, getting burnt, etc. i’m sure there’s more, but that’s all i can remember for now. oh, and short term memory loss. not kdding. from what i’m told, all of this is normal residual stuff that just happens. i feel bad for nate. i know how clumsy he feels, but he really can’t help it.

    • Anonymous
      April 4, 2007 at 5:11 pm

      I have broken bones in my feet on 4 separate occasions since my CIDP first began. I know a lot of that is due to the fact that I could not walk at all for 26 months, & even then it was mininally with a walker. I hate to say this, but if his knees are still giving out on him, it is probably too dangerous to try walking at this point. I stood with a walker for long periods of time (with my chair right behind me), before I tried taking any steps. Have him practice this first, it is a lot safer…

    • Anonymous
      April 4, 2007 at 8:53 pm

      I have broken my foot, and had many other accidents post-CIDP. The prednisone does a number on the bones and everything else is weak and prone to injuries. I take Fosamax weekly to help counteract the Prednisone and try to be really careful.


    • Anonymous
      April 5, 2007 at 4:35 pm

      We got his AFO this morning and they had him walk in it but it was so painful to do it, he didn’t go far.
      After that we went to PT and he did what he could but not walk much or do the bicycle. They worked on Nates upper body for today.
      We asked his PT person if its very common to injure yourself after GBS and she said its very common.
      She explained that the muscles and tendons are not getting complete signals and they over extend and are not able to tell you if they’re going too far.
      That injures them very easily.

      She told Nate to stay off that knee for now, rest, ice, elevate and wrap it.
      Not a good thing to look forward to.
      She says it will happen until everything is fully awake.
      Trudy, natesmom

    • Anonymous
      April 11, 2007 at 11:14 am

      I dont have a definitive answer, but can relay that I recently broke my arm from a fall — probably caused by my weak legs.

    • Anonymous
      April 11, 2007 at 8:40 pm

      We went to see nate’s primary doc this morning to get a referral for a new neuro doc either at UCSD or a private Neuro our doc knows. He thinks the private doc will take Nate on a referral from him. I hope so.
      UCSD is not real close to here and I really hate horrible parking and clinic situations like that would be.
      Nate’s Ortho doc and his PT person says nate needs some new testing to see what is going on with his hands, legs and feet. The numbness comes and goes and comes back. Nate loses his knees a lot more than he was and he injures them when they go out from under him. It’s also kind of scary when that happens and it hurts.
      Nate gets a little worried and so do I that he could be heading for a chronic thing. Hopefully not but we need to know.
      Nate also had some blood clots in his pee recently but it stopped. He says nate probably has bladder dysfunction since he only goes about 3 times a day. He cannot feel when his bladder is full until it is really full. Then he has a really hard time getting started.
      The whole thing doesn’t sound good to me.
      He wants us to bring him a sample to see if there is anymore blood in it. I hope not.
      Nate may need to see a urologist to see if there is anything that can be done to help with that problem.
      I can’t imagine only going 3 times a day. I go about 10!
      I also told our primary doc that nates Ortho doc says nates leg bones are “washed out”. He knew what I meant.
      It means that when someone is paralyzed, their bones get weak and fragile.
      He says it takes a long time to get them strong again and that is why you can break them so easily and injure everything attached to them.
      That makes sense to me.
      I still haven’t heard from them about whether the neuro doc will take nate.
      I hope we hear soon.
      Trudy, natesmom

    • Anonymous
      April 11, 2007 at 9:04 pm

      Thanks Trudy for all the information. I am sorry to hear all the trouble Nate and you are having. I keep pulling muscles and tendons in my legs for no reason I can find, but your explanation makes sense to me, that the nerves are still not working properly. A bit discouraging but good to understand what is happening. My bladder was paralyzed and I never knew when I had to pee either-very hard to go and it was very painful for several months. I had to pee sitting down for months as well, but gradually it got better. Best of luck to you guys, Jeff

    • Anonymous
      April 11, 2007 at 11:25 pm

      Nate still can’t stand long enough to go like we do. He still uses a urinal.
      I guess he will get there when he’s ready.
      The part hid PT person explained about the nerves not sending complete signals helped me understand a little better what was going on with his muscles getting injured so easily.
      His PT person explained that one to me that if the muscles are getting either stretched too far or hyperextended, they don’t know how far they’re going and can’t tell you, thus they get injured.
      I just wish the knees going out from under him would stop. Its scary.
      There are so many things to learn about and understand with GBS. Its a never ending learning experience, not one anyone should have to learn though.
      Nate tried wearing his new size 16 New Balance shoes we found at Famous Footwear today. The right one went on easily enough but then his toes started hurting from his shoe rubbing on them. His toes want to curl under.
      I guess his new shoes will take some getting used to. At least he wore them for about 2 hrs, then went to Walmart with one shoe on and his AFO on the other.
      It looked funny but hey, nothing is normal with him and he didn’t care either.
      I’m going to take them with me to the AFO place when we go back. Maybe Bert can do something with them to make them not hurt.
      Trudy, natesmom

    • Anonymous
      April 13, 2007 at 12:31 am

      Hi Natesmom,

      I am 7 years post GBS and my balance is awful. I walk with two canes but still have falls, bump and slam into walls, and a bunch of other body battering things.

      I think we will always have some degree of clumbsyness but as time goes on, we will learn how to counter the disasters and have less problems. Time is the key to GBS. Do anything with the words slow and determination. Time does heal almost anything. When I look back, I can see the great improvement.

      I hope the best for you and Nate,

    • Anonymous
      April 14, 2007 at 12:56 am

      I dropped Nate off yesterday for Pt. He was equipped with his new AFO and new shoes too. Big size 16 New Balance monster shoes.
      I Wish I had gotten to stay but I had to go drop off a specimen at his doc, then hit Costco, grab some stuff, all in 50 min. I did it though and got there right when he was coming out the door.
      I missed watching him take a small step up on a box holding parallel bars and I missed him walking outside with a walker up a small incline.
      He says both things were hard to do but he did it. The AFO is making it so much easier to walk now. His ankle isn’t going to go anywhere. YAY
      He says his knees kept trying to go out cause we forgot his knee brace.
      He was accomplishing something new and I missed them. Darn
      It’s almost like watching your baby take their first step up the porch.
      The last time he took a step up was December 05.
      Oh well, I will get to see him do it again tuesday. It should be fun.
      Trudy, Natesmom

    • Anonymous
      April 14, 2007 at 2:25 pm

      Dear Nate’s Mom:

      Two things come to mind when I read your post. First thing is that GBS affects the reflexes to a greater extent than other nerves. Reflexes are shortcut nerve pathways which go to the spine and back to the muscles, which means the peripheral nerve pathways for reflexes are twice as long as other nerve pathways which means they are likely to be twice as damaged. Reflexes protect your body from ligament tears and other damage by quickly relaxing muscles to protect joints and connective tissue from damage. I wonder what portion of Nate’s injuries are a result of the body not protecting itself in an automatic fashion.

      The other thing to consider about injuries is that fast twitch muscle fiber is more likely to be made ineffective by GBS. Fast twitch muscle fiber, by design, has less redundancy in the number of neural pathways than slow twitch muscle fiber. Fast twitch muscle fiber is primarily responsible for maintaining balance, so Nate is more likely to get into potentially damaging situations to begin with. One of the most important lessons learned in physical therapy is how to fall down properly without injuring one’s self. Nate ended up buckling his knees when he may have been better off falling down properly. Falling down is really counter-intuitive so it requires training to do it correctly. If Nate is still in PT, then learning how to fall may be a good use of a few minutes of PT time. PTs are usually pretty good about teaching older persons how to fall but may have neglected teaching Nate because of his youthful resilliency.



      Reminding young men to be more careful is usually an exercise in futility. They just don’t have the cautious mindset in their DNA.

    • Anonymous
      April 14, 2007 at 11:42 pm

      Lee, I am so glad you told me this. I never knew anything about reflexes and how they worked. This helps me somewhat to understand what is happening to him.
      Tuesday when we go to PT, I am going to print your post and show it to Nate’s therapist, and talk to her about what you said and see if she knows what you mean. I bet she will know exactly what is happening.
      When Nate’s knees buckle, he tries to catch them and only injures himself in the process. I will ask her to see if she can teach him what to do instead of doing that.
      It has to be so weird to have your legs do what his and a lot of people on this board do. I can only imagine.
      Trudy, natesmom