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Living with Polyneuropathy CIDP, GBS, & CMT

Muscle Twitches


#1

I have had muscle twitches that started when this first came on in June and have continued intermittently since then. They had almost disappeared until I attempted to jog a little yesterday. I was a runner before this happened and am eager to get back on track. Just wondered if anyone else have muscle twitches that flare up with activity. My neurologist told me to start doing activity to build back the lost muscle. He said that my nerves were regenerating but I don't want to hinder this process.


#2

Hello. I have the twitching in my legs real bad. I don’t have a neurologist doctor. The one I had said done need to see me again after the nerve test. How are we to build up muscle if not to over do it??


#3

I have experienced muscle twitching too when I exercise

Tally said:

Hello. I have the twitching in my legs real bad. I don't have a neurologist doctor. The one I had said done need to see me again after the nerve test. How are we to build up muscle if not to over do it??

#4

Yes, I get them too, all the time. I don't pay them too much attention, as they aren't debilitating (in my case). I might recommend cycling instead of jogging, at this point in time, it's much easier on your constitution!


#5

I'm an artist, and right handed; I first noticed my GBS in my hands. The neurologist told me that the first place I noticed will probably be the last place to heal. I read that drawing and writing in long hand were good exercises for the neurological system. I immediately began to write letters, draw and paint. My right hand is doing very well, not strong, but sensitive. What to do for my left hand, the fingers don't hold together and it shakes when I try to use it? And then I played the drums. I'm telling you, my left hand was looking for it. I think knitting would be good too, but I have a drum kit and the rest is magic. It's not 100%, but I really believe this how to help, it is helping. Find a way to engage your nerves. Good luck.


#6

Absolutley...I have twitching almost all the time, and it does seem to be worse after I exercise. My Dr told me the same thing...nerve regeneration, but I am 5 years post GBS come this September and the twitching has not gotten any better over the years. I get muscle cramps pretty bad too, that seem worse after exercise. I guess this is just a side effect of GBS, as I have read that many other people experience the same thing


#7

Try juggling. I think it would be good for your left hand coordination. Playing guitar helps me, but my fingers are a little sensitive to the strings.

That's cool about the drums. If you're around L.A. you're welcome to jam with my band.

Cheers, LanceB

Lily said:

I'm an artist, and right handed; I first noticed my GBS in my hands. The neurologist told me that the first place I noticed will probably be the last place to heal. I read that drawing and writing in long hand were good exercises for the neurological system. I immediately began to write letters, draw and paint. My right hand is doing very well, not strong, but sensitive. What to do for my left hand, the fingers don't hold together and it shakes when I try to use it? And then I played the drums. I'm telling you, my left hand was looking for it. I think knitting would be good too, but I have a drum kit and the rest is magic. It's not 100%, but I really believe this how to help, it is helping. Find a way to engage your nerves. Good luck.


#8

I have had 'muscle twitches' on various parts of my body. There are times that it feels that there is a bug, or 'fly' on me but it is just m.t.'s. In my front pocket areas there are times that it seems I have a phone on 'vibrate' and I reach down and think it is just my cell phone on vibrate mode but just my nerves playing tricks on me. This is just something I live with and just work on things I am able to do knowing my nerves do one thing yet do the things I can do knowing my nerves are just playing tricks in the body I have for now.


#9

It feels like things crawling up my legs and on my back. When real bad it feels like somebody is pushing on my back. Above my wrist it feels like bugs all the time.


#10

I had the tics and twitches pretty bad when I came home from the hospital. I especially noticed them in my eyes, all of a sudden my eye would just tic with a tempo lol. but you are indeed right, after a workout ,the tics would be pretty intense. I guess that is the muscle trying to regenerate and not having all the nerves cooperating yet. Mine has gotten a lot better, I am post GBS 1 year as of Labor Day and am running 4 miles a day now without any muscle spasms, tics or twitches. I drink plenty of water too. Best of luck to you, I am sure you will be better with time. Keep up the good work with your exercise regime.


#11

Lanceb. Finally of my bike on my trainer. Only took me two days. It’s so frusting don’t have the muscles anymore and not strong enough. Going to try and get up on it and pedal a few. May e one day able to ride with you. I did ride the unity tour and it was over 300 miles in three days, now I would be happy just to pedal three lol :). I leave oct 4th, still worried about flying will let you know how it goes :slight_smile:


#12

That’s so encouraging, Toni! I ran about 1&1/2 miles today with my dog. Can’t wait til I can do 4 again. Legs still twitching after but not as bad as the first time I tried to run. Hope I get to race again one day even if I have to walk some.


#13

Wow, Tally, sounds like you were a huge pedaler before this GBS thing. But slowly and surely, you'll be back. I was more of a couch potato before, but I ride my unicycle every day now. (I was still using a cane when I started.) I can do about 20 miles at a time now, and have gone 30 a couple times, but it really wipes me out. It's a little frustrating how long it takes to work up the strength and stamina. Sometimes I can't tell if it's the GBS or the age (I'm 62), or a combination of both. Either way, I'll just keep doing it until I can't anymore.

I don't blame you about flying, that makes me pretty nervous as well. I haven't flown anywhere since "the incident," and my international travel days are over. (Since a vaccination got me here, I'll never have another one.)

Toni and Tarhealing, you are amazing to be running. I hate to walk anywhere, let alone run! Cycling is much easier on my feet (and general self), but cheers to you for running. (You should post some pictures, they would be inspirational to others. I posted a short video of uni riding.)

Keep up the great work and progress!


#14

No couch potate here lol. Yes a lot of riding got my niece into it last year had bought a tandem. Iam only flying because my daughter and grand baby live in Italy. I would stay longer but my mom passed in oct so want to be here for my dad. Toni and tar healing great o. Running. I never liked it but I ran 6 miles ever other day to stay in shape for work. I so miss it now lol :slight_smile:


#15

Let's make it a goal to ride together! Let me know if you find yourself in the Los Angeles area, and we can definitely work it out!

Tally said:

Lanceb. Finally of my bike on my trainer. Only took me two days. It's so frusting don't have the muscles anymore and not strong enough. Going to try and get up on it and pedal a few. May e one day able to ride with you. I did ride the unity tour and it was over 300 miles in three days, now I would be happy just to pedal three lol :). I leave oct 4th, still worried about flying will let you know how it goes :)

#16

Lanceb that would be great. I live in Lakewood which is by long beach. So anytime when I get back. Or lunch. Just to go for a drive :slight_smile:


#17

Sounds good, Tally. I'm actually going to be down in your area in October. A few of us unicycle riders have signed up to ride the "Bicycle Tour" portion of the Long Beach Marathon on the 12th. That should be fun!


#18

Hi Tarheeling. My son Andrew is one year out from a really bad case of GBS (required full life support and long rehab). The doctors said he had some residual nerve damage, but he has been completely fine until a couple of weeks ago. He is 19 now and very physically active. He reports that he gets the tingling sensation again when he is working out really hard, but does not describe the feeling as muscle twitching.

A couple of weeks ago, he experienced foot drop again after working out. We saw the doctors for that and they said it can happen from time to time in GBS patients. It is not something to worry about unless the paralysis seems to get worse or move up your body. And they seem to have been right this time because his foot is now back to normal.


#19

I am new to this whole GBS thing. My symptoms were so mild compared to most that I am not a clear cut GBS'er. But two weeks after my first symptoms my calve muscles started to twitch (fasciculations). Which completly freaked me out. Because that is an ALS symptom. It started in both legs at the same time. Then I started feeling them all over my body. Mainly in the calves. Its been two weeks of twitching in my feet, calves, and body. It seems as if my calf twitching is slowing down some, but increasing in other areas. Weird, but from what I have read not much is that weird with GBS/variants.


#20

I have the muscle twitching and it bothers me sometimes. I hate when they stop for awhile then return. They used to be all over so I am glad they have slowed down. Let me know how you are doing. I was dx GBS Miller Fisher butbi believe I had the panautonomic neuropathy variant of GBS. Though it started inmy head first my autonomic systems was affected terribly first. Hope you are doing we.