Is this atrophy? What can I do?

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

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…..

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.

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.

Shirley,
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!

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.

Joseph

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.

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!