exercise question

I had GBS 25 years ago and was told I was fully recovered. I did have some tingling in my fingers and toes that never went away. I went back to a neuro last Nov because I was getting weaker when I exercised and could not do the repetitions as everyone else. I had joined a circuit gym as well. I think it is a combination of aging and residulas from GBS

KaliAnne:

I don’t think you are working to the point of muscle exhaustion. If you were, there would be lactic acid build-up and you would have aches and pains for a couple of days.

What I believe you are doing is working to the point of nerve exhaustion. The myelin sheath allows jumps along the nerve axon which speed nerve signals but it also increases nerve efficiency. You may be exhausting the energy supplies along the nerve axon leaving nerves incapable of operating.

Working to the point of nerve exhaustion is counter productive. It offers no muscle benefit or cardio-vascular benefit and it may be destructive to starve nerve axons. Furthermore, there was a study about over-exercising after GBS in which it was discovered that nerve axons that are in good conditions sprout many branches to compensate for damaged nerve fibers. These super axons work well for many years but they tend to die off faster than normal nerves. When they die off, they aren’t replaced and it could lead to increased paralysis as you age.

If one of the reasons you are exercising is to be healthier as you age, then you may want to rethink your exercise routine. Specifically, you should exercise until you get tired, and not past that point. You should [B]never[/B] work to the point of exhaustion.

With that said, any exercise, no matter how poorly done, is better than no exercise at all. You should continue working out because the health benefits are undoubtable. You just need to be aware of what is going on with your body and adjust your routine accordingly.

Lee

I agree with what the others said….you might be back to functioning like you did before but not as effeciently as you did before. One day you might work on upper body and another work on lower body and the third day core. Or a smaller routine combo of all three which is what I have done. After doing a day of rehab or weights I rested and maybe just stretched and did water routines. Worked on balance, breathing, balance and range of motion rather than strengh. The water gave my support by releaving weight on the joints lettting them rest and also the muscles. It is important to move daily but not over do it to the point where you feel the burn. You should exercise as it is to maintain a condition not to join a competetion. Listen to your body it is telling you to back off or slow down. You don’t want to do damage to your body that can not be repaired. Find out who much time is spend on physically training the person with GBS to get their degree. If you have never had it, it is hard to explain to someone what you go thru. Fatigue is different than being just tired or even exhausted it is hitting the bottom. Fatigue is not like a car running out of gas it is like that car hitting a brick wall and then trying to travel cross country. When your personal trainer is not given all the information you are not doing yourself any justice. Please be careful with your health.

I had an ah-ha moment reading through this thread and even though I knew about the nerve axons, etc. I think I had overlooked how that was impacting me as I age. As I said I am 25 years out and yeah, it makes sense that the nerve axons I had generated 25 years ago are now wearing out. So Lee, thanks for your response to Kallianne. I wanted you to know it also helped me as I look for deeper understanding to what is happening to me today. I never expected this disease to rear it’s ugly head after 25 years. I was told I was full recovered….no one ever told me what to look for down the road. I was sent home from rehab and forgotten by the medical profession. I guess this just reaffirms how little the medical profession knows about our illness.

KaliAnne:

I am a strong believer in exercise. I have a rigorous 45 minute exercise program that I do every day. It just takes me an hour and a half to do it. I think with GBS most of us can still do anything we want to, we just have to be smarter about it.

On my 50th birthday, I plan on doing 200 push-ups without stopping. Its a foolish act of defiance but it keeps me off the streets.

Lee

I am almost a year post onset and am now and was prior an exercise fanatic. I lift weights six times a week. My upper body is stronger now then it was before GBS. My lower body is not yet, but the cause isn’t directly related to GBS, but rather because GBS prevented me from walking for seven months. Some of your leg muscles are designed to be stregthened by use. I am 100% confident that I will get back. My point is that there seems to be a tendancy to blame every change on GBS. While understandable, it is wrong. I haven’t got sore from working out in years and trust me, I work till muscle exhaustion. Your body changes with age and even day to day dependent on things like sleep, food/liquid intake, etc.

Particularly, as the years go-by, GBS shouldn’t be the first suspect. Now I write this for those who like me are luckey to be fully recovered. There are many of you that have GBS symptoms for years. It is the primary reason that although I visit the site, I don’t post very often because many of you are GBS experts.

Exercise and Physical Therapy was my big question, also, following hospital release (10/05). Like others, I could not find any research with any instructions.
I still have tingling/numbness in my feet, tingling legs and arms, rear muscle tightness from the lower back down to the bottom of my feet.
I work out 5 – 7 days/week at home. I have built more muscle mass over the past few years than I have ever had. I started out VERY slow. My muscles (lower & abs) were WEAK and getting ugly. I could barely move – massive pain.
Anyway, I currently work out mostly with GILAD. I have several videos varying from performances of arobics, scuplting, toning, weight-bearing, weight-lifting, stretching. I worked his programs during and following my five pregnancies – but have never worked as hard as I do now. I feel obligated for the gift of receiving the ability and possibility – (and I feel like I am regressing if I don’t work out)! I pretty much have aches all the time. I am always finding new muscles.

Lee,

Wow! Thanks for your input on this subject. I am new to this, so there are a ton of things that i am clueless about. I’m glad i read through this thread! You are all so knowledgible! I have learned way more from all of you than i have from any medical professional (and i am one of them). 😉

Jamie,

I am 50 years of age, 11 years out of GBS and finally, getting in better shape thanks to something I feel comfortable with. I am doing the robotic exercise program where the machines move and you resist as much as you can. It is a 28 minute workout and I LOVE IT!!! Some days I give it more than others. I am not usually sore as I have learned over the years how to respect my nerves and muscles.

The stretching of this exercise program I believe is the best benefit I am receiving and would recommend it to anyone. Again, you have to be aware of your body and know those dang ole nerves aren’t what they used to be (before GBS) and now at 50, my whole everything isn’t what it used to be…

Always good to hear what we are doing trying to improve ourselves.

P.S. Great to see you posting Lee!!!

I have also found this website helpful. My husband was DX with GBS/MFS last June. He is a professional athlete so before contacting GBS was in great shape. He had a milder case and within weeks of hospital release was back to work. He has since had two episodes (residuals or relapses ) we think were brought on by excessive exercise. Being an athlete he has a higher tolerance than average for exercise. He has noticed he was not feeling as fatigued after a strenuous workout. This time however, it is taking him a little longer to shake the tingling and numbness. He may just have pushed a little too much and was never really fully recovered. Anyway I think you just have to find a medium and not over do it. Men are stubborn. I think he may have learned his lesson though.

My son was diagnosed at age 16 with GBS. A week in the hospital and four months of physical therapy (in the end it morphed into acceleration training) later…..

He went right back to his all conference, district, and state performances in basketball and baseball. In fact he will continue his athletic career this fall as he will be playing college basketball.

When he came home from the hospital with a walker, barely able to take a step on his own…. we had our doubts as to what the future held.

I think the key to his recovery was his determination, together with the knowlege and willingness of his physical therapist to research GBS.