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Living with Polyneuropathy CIDP, GBS, & CMT

Will muscle twitching and leg fatigue ever go away?


#1

Does anyone have increased muscle twitching and leg fatigue after running or doing physical activity during their recovery period? I have been running again and notice that my calves twitch more afterwards especially the more intense the activity like a race. I'm thankful to be running, however, I don't want to be hurting myself. Just wondered if this ever goes away or if I am causing further damage.


#2

I'm not sure I have the definitive answer to that, but my own experience is that it gets better, although very slowly. I've never been much of a runner (or exerciser in general), and post GBS my feet always hurt, so running is strictly out for me. Instead I've taken up cycling (unicycling, specifically), and it has really helped increase my leg strength. However, the increase is really slow. I've been riding for about two years now, and I've gotten a lot better at it in that time. But my legs are still pretty weak (it's not easy to walk up and down stairs, for example), but I can see improvement when I look back over several months. You really have to take the long view. Fortunately, this is something I really like doing, so I do it for the fun of it, which makes it easier to have some patience with the muscle improvement.In any case, I would caution against pushing it too hard. It's easy to try to do "personal bests" on a regular basis, but I think it's best to just go for "easy cruising" most of the time, and save the real pushes for once-in-a-while efforts.

Glad to see you're running again, and best of luck with that activity!


#3

Good questions. In my case I feel leg fatigue and increased neuropathy. Sometime I feel like I’m pushing too hard, sometimes not hard enough. I know there is a happy medium, just wish I knew what it was.


#4

My plan for my first race was to just go for the slow finish. I had been jogging conservatively and had built back up to being able to handle that distance. Once I was running in that race, I went out faster than planned and it just felt so good to be doing something I had been unable to do for the past 6 months. I will say that it took a lot out of my legs but I'm doing okay. I think that's good advice to "save the real pushes" for special occasions. I do have different limitations now than before and I'm not sure what is permanent and what will continue to improve. But I thought that I would never experience a race again or running, so I feel extremely thankful. I keep trying to find the happy medium too. I have mixed up my work out so that I'm not always over pushing myself physically but I wish there was more specific info out there about how to get back on track from this.


#5

One other thought, I've taken to wearing compression sleeves on my calves for longer rides (like 10 miles or more), and find that they really help with twitching and fatigue. Not sure how popular they are with runners, but you might give them a try.


#6

Sounds like a good Christmas present for me! I'll try them. Do you have still get twitching and fatigue?


#7

Yes, I do, but the sleeves help quite a bit. Also, my legs feel better after the ride (quicker recovery). I won't say it provides a huge improvement, my rides are still about the same length, but my legs do feel better during and after. More-so after longer (20-30 mile) rides, or particularly strenuous off-road trail rides. So you may not feel the need for regular daily jogging, but for longer sessions or races I think they might help.


#8

Good for running. I ran 70 steps lol. I order a cream last night, to try to rub on for twitching legs. My big toe in right foot will pull away. I have tht calve thing too. I do think it’s if I over do it


#9

I came down with GBS in May of 2013 which was a sever case of axonal damage. I was a master level competitive cyclist.The road back has been very slow, especially the last 6 months. I am a cycling coach and personal trainer. So GBS has really changed my life style and I doubt I will race again. To answer your question might depend on how sever your GBS was. If you suffer damage to just the Myelin Sheath you should expect a very good recovery. So I would recommend a easy ramping -up of your activity and base it on how you feel.Try lower leg stretches for calves after running (google stretches for Gastrocnemius and Soleus muscles). Heat treatment may also work. Great to hear you are running.

Cheers Jaguar JOHN


#10

About a year out now I’m starting to train for a spring marathon and doing ok. Keep trying, but if you’re not ready just give it more time. I tried starting up running again 3 times before the leg fatigue and heavy feeling I had in my calves allowed me to keep it going. I can’t sprint and don’t think I could every really play sports again, or actually compete at all in endurance racing, but distance jogging seems fine. Good luck!


#11

Hi Jaguar John,

My wife was also having the same case of axonal involvement. May i know how much you recovered till now.

Chandan


#12

I will try those stretches, Jaguar John. Thanks! And Jclev a spring marathon is amazing!! I would love another shot at that. I tried to sprint at the end of the 5k I just did and had a little kick to the finish but I was on such a high to be finishing a race again. Definitely surprised I felt so good during that race. Pretty sore since though. Let me know how your race goes. Good luck with training!


#13



Chandan said:

Hi Jaguar John,

My wife was also having the same case of axonal involvement. May i know how much you recovered till now.

Chandan


#14



Jaguar John said:

Chandan, after 18 months from the onset of GBS I walk but have poor dorsiflexion (ability to lift foot up) necessary for heel strike. Therefore I need to think about lifting my foot movement to get the ankle movement. While walking most people would not recognize I have a problem. I do have fine motor movement issues, that is, doing a lunge, heel-toe walking, standing with feet together and eyes closed, standing on one foot etc. I would never pass a sobriety test if stopped by police. I do ride my bike but I produce about 70% of the power I normally would. My neurologist says I will get 90-95% of balance back and get stronger.

I have worked very hard to get where I am at today, and still practice the movements that I am weak at. This is very important. The more you keep practicing what you are weak at, the better chance your brain-muscle response will improve.

Keep up the hard work and don't give up.

Jaguar JOHN



Chandan said:

Hi Jaguar John,

My wife was also having the same case of axonal involvement. May i know how much you recovered till now.

Chandan


#15

Lance. How are you doing. I was ill a year ago this thanksgiving. Like the others o am concerned about the muscle twitching. I had them all over but it has lessened to few her and there more if I try to push body. How are yours now?