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Living with Polyneuropathy CIDP, GBS, & CMT

Muscle spasms in odd places


#1

I am 11 months out in my recovery from GBS and doing quite well. But I do have a question that I have not seen posted here. The question is has anyone else experienced muscle spasms during recovery. I am experiencing them along my sides between my diaphragm and waist area and also in the front of my neck. In my sides they start out slowly and if I don't stretch the apposite way right away, they get pretty strong. Then I have to rub that area also to get it to release.The ones in my neck start from under my ear and go to the middle of my neck. These are harder to get rid of. I stretch my head in the apposite direction but I will also have to rub my neck along the jaw line or these too will get pretty intense and will feel like someone is chocking me
These spasms will happen at random times. I would expect them during my physical therapy sessions but that is not when they happen. Any insights would be of help. Thank You.


#2

I have leg spasms. When I was in the hospital, I would have one leg or the other spasm. At times it was every 8 seconds. I'm 8 years out now and have occasional problems at the end of the day if Iam tired or my legs get cold. Heat helps (usualy a warm bath). Sounds like your GBS is fairly recent. They did give me medication for it but that was 8 years ago so I don't remember the name. As you get better they will probably become less common. (I get spasm episodes once or twice a week.


#3

I am 4 years out and within the last few months I've developed spasms strong enough to move my body. It's happened when I'm lying straight on my side in bed. The spasm will put me in the fetal position within a few seconds. It's not painful at least-very strange!

My back and neck get really tight suddenly sometimes when I do light housework. Heating pad helps.


#4

Hi Dollywood, I’m 11 months in as well! Last Christmas sucked didn’t it?



On topic, I had bad twitches all over my body, big thumping ones and the occasional strong spasm. I was twitching even in places I didn’t know I had muscles, if that makes sense? This all started for me in about March and got slowly worse but then gradually got better again.



I still twitch daily, but now its only my right eyelid and right index finger. I do find that exercise can be a trigger for the twitching, I think its all just part of the muscle/nerve healing process.



When my twitches were really bad I was taking magnesium supplements daily, and these were a big help.


#5

I get twitching and tingling in feet and hands. I only have gbs 3 months but doing well . Walking with walker


#6

Something happened to my phone. Does this ever go away gbs. I have been reading so many different things. I hear it can even come back does anyone know more then I do please let me know


#7

Also does anyone know if I can take vitamins


#8

I am 5 months into recovery. I have spasms in my right thigh, right lower arm and hand. I started taking a folic acid about 4 times a week and they have almost went away.


#9

I'm about 6 months out and I had the exact same neck twitch a couple weeks ago (right side from ear to middle). All of my twitches eventually go away, but I've had them everywhere (eyes, the muscle under the nose that separates lips, neck, finger tips, toes, calves, etc.). The places that I still get them correspond to where my muscles/nerves were the most impacted and are still healing (toes and face/neck). I personally think it's a good sign as I end up getting more movement and strength in the areas a few days after the twitching.


#10

Hi, Beverly, I am about 2 years out: also, I had open heart ( five by-passes) in 2005.

My doctors said it was best for me NOT to take flu shots anymore and

suggested during the bad flu season to take vitamin C (500mg) daily:also,

use Zicam oral mist in case of sore throat.

Beverly said:

Also does anyone know if I can take vitamins

#11


Hello Nojabold, You got that right last Christmas did suck, as I was in the hospital at that time. I was discharged on New Years Eve so at least I started the new year at home. This Christmas has to be a whole lot better for us, as we will both be a year into our recovery. It makes sense to me about muscles twitching in places were you wouldn't think about twitching as it happens to me also. I am going to my doctor in a couple of weeks so I am going to ask her about taking Magnesium at least temporarily. Thanks for the suggestion. Stay strong and keep a positive outlook. Dollywood.


Nojabold said:

Hi Dollywood, I'm 11 months in as well! Last Christmas sucked didn't it?

On topic, I had bad twitches all over my body, big thumping ones and the occasional strong spasm. I was twitching even in places I didn't know I had muscles, if that makes sense? This all started for me in about March and got slowly worse but then gradually got better again.

I still twitch daily, but now its only my right eyelid and right index finger. I do find that exercise can be a trigger for the twitching, I think its all just part of the muscle/nerve healing process.

When my twitches were really bad I was taking magnesium supplements daily, and these were a big help.

#12

Hello Everyone, Thanks for the reply's and all the good info. I am going to my doctor in a couple of weeks so I am going to ask her about taking Magnesium and Folic Acid supplements for the spasms. Also about taking vitamin C during the flu season and Zicam for a sore throat.


#13

As of today I am one year out from recovering from GBS after an appendectomy. I still have the spasms but they are in my feet and my Dr. recommended tonic water. It really works. I use it with a splash of juice in it as it tastes nasty plain. I also take magnesium, potassium, and b-12 supplements I think they help a lot. Good luck. I hope this helps.


#14

Wierdly, I just started getting them again last year. I had Guillion Bare 30 years ago. Mine aren't painful, there just wierd thruout my whole body.


#15

After almost six years, I'm still getting big and bad muscle spasms, Dollywood. Last month while relaxing quietly in my recliner, my calf started into spasm. Usually I jump up to a standing position and try to stand on my toes (hardly works because my feet are still paralyzed, but I try). This time I couldn't even get out of my recliner because my legs are so weak, and the spasm quickly took over my entire lower body. It was like having a seizure and so darn painful I couldn't talk. Fortunately, my husband and daughter were right there and although they couldn't understand what was happening I finally managed to shout out "get me out of this chair!" It's kind of funny now, but not at all at the time. Trust me, I'll never sit in a recliner again. I really wanted to warn you about body spasms...last year I had emergency surgery for a torn retina. The surgery requires sitting still for well over an hour which I could never do. Furthermore, when the anesthesiologist heard about my spasms, he decided that I needed to be put completely to sleep--my spasms seem to occur most when I'm really relaxed and being partially under for surgery was perfect setting for a giant spasm.

When it came time for my cataract surgery (only about 30 minutes) the same was true...the dr. had never put someone completely to sleep for such a "piddly" procedure, but he didn't want to take any chances on my jumping around in the surgical center.

I thought maybe it was worth mentioning to everybody who has spasms that they should be certain to tell their doctors/surgeons about them and your GBS before any procedure.

Hope yours are becoming fewer and further between. Keep plodding away...we all know how hard it is.

KC


#16

I have neck spasms in the front of my neck like they are in my throat, feels awful, as well as the sides of my head and my calves too. I was diagnosed March 15 but they are not sure now it is GB. Still weak in the legs, arms better, but numbness in back now. The spasms are really disturbing. Also get jaw weakness when chewing.

Glad I had a mild case but it is still the gift that keeps on giving.


#17

I am 18 month out, I get muscle cramps on my neck as well. Sometimes a couple of times a day other times once a week.


#18

I'm a little over 3 years out and spasms have been a problem. Mostly occur at rest and they are terribly painful, disruptive to sleep and although lessoning over time still occur at least daily.


#19

I get those spasms in my sides as you describe. Very disconcerting - hard to stretch out.


#20

Try drinking pickle juice it help my muscle spams alot