HI Everyone. I'm so glad to have found this support group! I seem to have been very fortunate in that my GBS only effected me from the waist down and I was always able to walk, though just barely at first. I see now how frighteningly serious it can get. It's been 7 weeks now since this began for me and I am getting better but very slowly. Some days I'm not even sure that I am getting better. But I walk with an almost normal gait now so I know I am. I have quite a lot of pain, especially in my feet, but nothing I need medication for. Just can't walk much. My neurologist said exercise is fine but I am wondering if you have heard otherwise. He hasn't referred me for PT or anything else. Just told me to rest and eat a lot of protein. I am (was) a runner and am wondering, when my coordination is good enough, can I start to slowly jog? Will that in any way harm or slow recovery? Running is such a stress relief for me I would love to be able to do it again. And I'd of course take it really easy to begin with. Just not sure what's ok and what isn't. I haven't been given any real guidance at all by my doctor. Thanks for any help!!
In my personal experience exercise if very important. But not too much, not too little. Too much and it can cause a decline, too little and I also decline. So in my opinion finding the right amount and rhythm for you regarding exercise is extremely important.
You sound so much like me although my face was also affected. I was a runner too and used running for stress relief as well as just something I loved to do. I was running about 6 miles a day 4 or 5 days a week when all of this happened to me. I ran 5ks, 10ks, and a few marathons. After this hit me, I was always able to walk but also just barely at first. I am coming up on a year. I think that I tried to jog too soon in the beginning. You may want to start easy. I was referred for PT and it was great. I think it allowed me to get back to running sooner. You may want to request it. I found that for some reason my core would tighten up and cause me more pain especially when I first started exercising again. The best thing that I did was start walking in a pool. All I could do first was about 5 minutes. You won't believe how draining it is and you may want someone with you when you get out. My legs would feel like lead. Be careful not to overdo it at first because I found I would struggle for the next 3 days if I did too much. So I would walk about 5 feet in the pool forwards and backwards. Then I would do serpentines (like an "S") in the pool forwards and backwards. It was a more non aggressive activity to help with strength and balance. They had me also doing recumbent bike slowly at the beginning to strengthen my legs and stretch out my lower back. My GBS did affect my spine in the beginning though so as I did more activity my back would tighten up to support my body and I would have pain. The PT would help stretch out my dura but also had me doing that at home by leaning over a Yoga ball and rocking forward and backwards. I also sat on it at home and rocked forward and backward and side to side. She said this would strengthen things too without being too aggressive. I started jogging a little after that but had to alternate with other activities the other days. I could barely jog at first and not very far and it made me really sad at first because I was so limited but I just had to be thankful and focus on rebuilding. I got GBS June 2014 and was able to run a very slow 5k in December. Since then I relapsed in February and am jogging about a mile and a half but I have some pain at night. Standing at work really takes a toll too. I love your question because I still struggle with how much I should do. I've been swimming some now and really cross-training because I get injured so easily now and suffer setbacks so easily. Let me know how it goes. Good luck getting back on track!
Thank you! That is helpful. I did a yoga class yesterday as my first exercise since this happened, thinking it was gentle and no impact. It felt great. I think you're right, if I get overtired I swear I feel symptoms worse the next day. I'll try to find that perfect spot in the middle. Thanks!
Nostromo said:
In my personal experience exercise if very important. But not too much, not too little. Too much and it can cause a decline, too little and I also decline. So in my opinion finding the right amount and rhythm for you regarding exercise is extremely important.
Thank you, we do sound like similar stories! My low back is also effected and is still profoundly numb. I find by week 6 I have started feeling a bit depressed not being able to go out and even really walk without a lot of foot pain. I"m so glad you were able to run again after 6 months. But sad to hear about your relapse, I'm sorry. Is that common? I have this nice image in my head of just getting better and leaving this behind. Do you know if many people relapse? Is that just in the midst of the healing process? It's hard to find answers on how much to do, maybe because each of us has such a different presentation and level of health and recovery process. It's frustrating. I don't want to make this take any longer that it already is, but I want to get back out there as soon as I can. I think this has been my lesson in slowing down! Thanks again and keep me posted on your recovery and running! Thanks again.
Tarhealing said:
You sound so much like me although my face was also affected. I was a runner too and used running for stress relief as well as just something I loved to do. I was running about 6 miles a day 4 or 5 days a week when all of this happened to me. I ran 5ks, 10ks, and a few marathons. After this hit me, I was always able to walk but also just barely at first. I am coming up on a year. I think that I tried to jog too soon in the beginning. You may want to start easy. I was referred for PT and it was great. I think it allowed me to get back to running sooner. You may want to request it. I found that for some reason my core would tighten up and cause me more pain especially when I first started exercising again. The best thing that I did was start walking in a pool. All I could do first was about 5 minutes. You won't believe how draining it is and you may want someone with you when you get out. My legs would feel like lead. Be careful not to overdo it at first because I found I would struggle for the next 3 days if I did too much. So I would walk about 5 feet in the pool forwards and backwards. Then I would do serpentines (like an "S") in the pool forwards and backwards. It was a more non aggressive activity to help with strength and balance. They had me also doing recumbent bike slowly at the beginning to strengthen my legs and stretch out my lower back. My GBS did affect my spine in the beginning though so as I did more activity my back would tighten up to support my body and I would have pain. The PT would help stretch out my dura but also had me doing that at home by leaning over a Yoga ball and rocking forward and backwards. I also sat on it at home and rocked forward and backward and side to side. She said this would strengthen things too without being too aggressive. I started jogging a little after that but had to alternate with other activities the other days. I could barely jog at first and not very far and it made me really sad at first because I was so limited but I just had to be thankful and focus on rebuilding. I got GBS June 2014 and was able to run a very slow 5k in December. Since then I relapsed in February and am jogging about a mile and a half but I have some pain at night. Standing at work really takes a toll too. I love your question because I still struggle with how much I should do. I've been swimming some now and really cross-training because I get injured so easily now and suffer setbacks so easily. Let me know how it goes. Good luck getting back on track!
I think my reflare of symptoms was just in the midst of recovery but it did happen following a sinus infection. It wasn't nearly as bad though but I thought I was done with this whole thing. I actually have an upcoming appointment with a doctor at Johns Hopkins so I'm hoping he will help me understand more about this whole thing. I'll let you know what he says about exercise and running. I am lifting some weights again too but I have to be careful with that as well. It was a long time before I could do that. It made my back hurt even if it was just 5 pound free weights. I think the Yoga sounds great. It's less aggressive and involves stretching. Even at a year out, I still don't know my limitations. GBS affects so many areas and it fluctuates. It makes it hard to know how to gauge getting back into activities like running and exercising and then building back up. My endurance sure has taken a hit! Have you noticed that?