Is this atrophy? What can I do?

    • Anonymous
      March 26, 2008 at 3:18 pm

      Every morning before I can get out of bed, my husband has to straighten my legs and help me get up. The first couple of hours I am up, if I try to stand up the right leg will draw up and the pain will go through the foot, up the back of the leg and across my lower back. After it has done this a few times I am able to move my legs without it hurting for the rest of the day (except for the tingles from lower back to my feet and the lower legs feel like I have the old plaster cast weighting them down all the time).
      Any advice is welcome.


    • March 26, 2008 at 3:33 pm

      Shirley,This is very perplexing to me.* I should mention that Kevin has cidp, to start with, so to some degree what he experiences is different from what you experience.* However, I AM POSITIVE Kevin does NOT have muscle atrophy.* First of all, he gets ivig monthly which is probably more than he needs, he could probably go 3 months, but this is the best course to keep things in check.* Most importantly, now that he is in a regular cycle of ivig, he has all of his stregnth back, he is a mad man, running, trampoline, bike, you get the picture.* BUTTTTTTT every morning when he wakes up, it is just as you explain. It takes him a little bit to get going, he says he is stiff, or tight, and when he stretches out, he is better, as you describe. I would imagine if it were atrophy, the improvement from a little bit of stretching would not clear the situation. I personally think the myelin sheath just sustains some form of permanent inflamation, and just needs a little stretching in the morning to start allowing the messages to get through to the muscles. GBS/CIDP is so complex, and I suspect there is no way to say for sure what is what except for patient to patient comparison of symptoms.

      You are pretty freshly diagnosed, so I would take it easy on PT, although it may stregnthen your muscles, it may tire your nerves. You will know when you have done too much, it may take a couple of episodes so to speak until you learn to figure out what your limitations are! Good luck and best wishes are sent your way for a good recovery!
      Dawn Kevies mom

    • Anonymous
      March 26, 2008 at 5:59 pm

      Dawn Kevies Mom,
      Thank you for responding to me. Your advice made me feel so much better.
      I am so glad that your Kevin is a mad man and has all of his strength back. May it always stay that way for him.

      My pt is 1 hour twice a week. I am tired but not exuasted afterwards.

    • Anonymous
      March 26, 2008 at 7:46 pm

      My legs are also especially stiff in the morning and my legs feel like they have lead in them most of the time. I am thinking this may just be the way it is for me. I am 1-1/2 years out from a “very mild” case. Stretching and going through a few simple leg exercises seems to loosen them up and then I start all over again the next day! Best to you in your recovery…..

    • Anonymous
      March 26, 2008 at 7:47 pm

      Hi Matteyrae,
      I too am very stiff in the morning. If my legs and arms are bent, It takes a bit to staighten them. If they are straight, it’s hard to bend them. Before I even try and get out of bed, I stretch. Ankle pumps, pull knees to chest, arm reaches to the ceiling, then reaching to the headboard. Some of the “warm up” exercises from eary PT treatments. I still walk a bit stiff until I get a hot shower, but the stretching helps. Talk to your therapist, he or she might have some tips for you. Keep trying and best wishes too.

    • Anonymous
      March 26, 2008 at 11:22 pm

      Hi Matteyrae, Welcome to the forum. You will find many people here with suggestions, information and just the need to help others get thru this experience. I am so sorry you had to deal with a slow dx. I agree with the others stretching may help, heat from the shower might help and just a good massage might wake up your legs in the morning. I might also start to get cramps and that might be the lack of potassium so a bananna a day might help and eat your broccoli. When ever you need help just post your problem and someone will end a hand. Sounds like you have a great caregiver behind you too. I still walk the walls in the mornings at times when I am stiff. It usually works out pretty quickly. When I do too much during the day and don’t get my REST then I notice my walking suffers the most. Sounds like you are going great! Remember GBS also stands for Getting Better Slowly.

    • Anonymous
      March 27, 2008 at 7:53 am

      Iowagal, Smiley and LadyKITUSA,
      Great advice from all of you and I am thankful to get it. The stretches, ankle pumps, hot showers and massages I have done it all and it does help. LadyKITUSA, I think I will take your advice on the bananna and
      broccoli, since I love them both. My caregiver is wonderful. The hospital included him in everything that was done to me or for me. They taught him to change the dressing on my bedsore. I had that sore from Oct. 07-Feb.08and he took care of it at home also. He would clean me and feed me in hospital. I am glad to say that I can take care of myself, clean some house and do laundry. He’s the best, I had to get well enough to get home, the Hospital and pt staff was falling in big time LIKE with him. He’s a keeper, It will be 40 years in July.
      Thank you all so much it seems that we have a lot in common with the GBS.

      Stay well
      Acute GBS
      dx 11-07
      15 treatments PP

    • Anonymous
      March 27, 2008 at 10:53 am

      40 years…AWESOME! He definitely must be a keeper! I am at 35 years and my guy is a keeper too. He got me through some of the toughest moments. When they think nothing of helping you with your personal care, well that just about says it all. I couldn’t have gotten through that time without him. He was and is the best. Take care of yourself but also encourage your partner to take care of himself as well. It is hard to not be selfish sometimes when you struggle with the healing process, but hindsight has shown me that this illness not only took a toll on me but also on my husband!

      Be well!

    • Anonymous
      March 27, 2008 at 1:23 pm

      I am so glad that you have a keeper. Now that I am able to do more, I know it takes pressure off my husbsnd. I watch what he eats and we make sure we have several evenings and most weekends that we do nothing but relax at home with each other and old movies. Your right, this illness did take a toll on him. We documented my stay in rehab hospital with pictures and a couple pictures I took of my husband, I could see he was tired and worn out. The next weekend, which was football all weekend, I told him to stay home. It did him a world of good to do nothing but enjoy his favorite past time, football, eating and talking to me on the phone once in awhile. Thank you for your good advice. I have to watch out for my guy so that we can both heal from GBS. 35 years..I love to hear about couples that have been together many years. When we said I DO and FOR BETTER OR FOR WORSE, truer words were never spoken.

      Thank you and stay well.

    • Anonymous
      March 28, 2008 at 12:09 pm

      my legs give me alot of trouble in the mornings. I was dx march29 2007 almost a year now and still recovering. It is slow going and I think that I have accepted the fact that it will proabally be this way the rest of my life.GBS was a hard deal for my wife to accept. I was always real healthy all my life and so it was difficult. She stayed with me the whole time I was in ccu and that was six weeks alot of the times sleeping in chairs and bathing in the bathroom. Once I came around I got the nurses to let her use their bathroom and shower. Ya gotta love those sig others lol. I would not have made it without my wife. Been together 30 years now and am looking forward to another 30.


    • Anonymous
      March 28, 2008 at 3:42 pm

      Congratulations to you and the Mrs. on those 30 years and your next 30 +. Don’t know how we could have made it without our spouses and caregivers. It may be this way the rest of my life but I hope it gets a little easier for all of us. I know it was hard for my husband and I felt for him while I lay in the hospital bed and see his tired face as I looked across the room, It just broke my heart. As I became more able to take care of myself and do a few things at home, I relieved some of the pressure from him. As I became more accepting of GBS always being a part of my life, that helped him also. I may not walk like my old self but I do act like my old self that has helped the most Iwill let GBS be a condition that I have but I will not let it be an intruder.
      Stay well and keep working on those next 30 years.


    • Anonymous
      March 28, 2008 at 4:05 pm

      Shirley I am going to add this information to the forum too. I don’t think it has been mentioned. To a degree I think this is caused by the atrophy in my case. I have not come back even now as strong as I was. I may never get that kind of strenght back. But due to that weakness the muscles in the legs have had some degree of atrophy and they do not effeciently help the body move the water out of the tissue.

      The stiffness and pain I feel in the morning, is in part, due to swelling or the Lymphodema that I have in my legs. Once I start moving around the fluid moves around and is pumped by the action of the muscle and tissue, out of the legs. Make sure you don’t have any swelling.

      I do know that the ligaments and tendons do take a few minutes to stretch and work out the tenderness too. So I am sure with the inflamation of the nerves that this is part of the GBS. Also, if I use my hands to twist or type or run the sweeper they burn and swell. Rehab would make my hands swell like a baseball each day. Especially if they over stimulated them with vibration or massage. So sometimes what we do for one thing will make another thing act up.

      The best part of all of this it is very wise to listen to your body. Over doing anything when you have GBS can cause you to have a relapse. It is very hard to keep a possitive attitude when you take take two steps forward and three steps back. That is well documented when someone returns to work too quickly, they slide backwards. So listen to your body and do only what you know will not set you back. Spreading out chores over the week will get them done without any back sliding. There is no law that the laundry has to be all done in one day. Give those muscles time to build up strengh but also give them time to rest. The key is to get well and stay well.

    • Anonymous
      March 28, 2008 at 11:30 pm

      I loved reading how so many of you realize how much our significant others participated in our recoveries. I have been with my husband 36 years now, 33years of marriage. I was only 48 when I came down with GBS/CIDP, & it was very sudden. As sick as I was, he was the one who still had to keep working full-time, deal with the insurance company, take care of the house, the bills, the laundry, & the kids (fortunately in their 20s.) He also had to drive 5 hours each way every weekend to see me at Mayo for 3 months.

      Then there were the 2 1/2 years of giving me sponge baths, the transfers in & out of the wheelchair, & getting me in to see Dr. Parry when the Mayo gave me a terminal dx. I have know way of repaying him, except to try to remain positive, even though I did not make the greatest recovery. I wish more of the younger people today would take those marriage vows more seriously!

    • Anonymous
      March 29, 2008 at 2:12 pm

      I can relate to everthing you have said. We all need to keep as much of a positive attitude as possible and listen to our body. You have given me so much useful information
      Thank you

    • Anonymous
      March 29, 2008 at 3:00 pm

      That had to be so rough on you and your husband, what a trip and I do mean a long one. It was probably like a whirlwind for both of you by the time you got home and could finally take a breath and say “at Last”. Our caregivers don’t expect payment for all they have done for us. Each small bit of improvement is their payment. I don’t believe my recovery is complete but I am thankful for what I have and any more recovery that I receive. Everyone needs to take the marriage vows more serious. Aren’t these spouses great!!!!
      Take care