muscle spasms in my legs

I am about 12 weeks now and yes muscle spasms do happen. Our nerves are misfiring nad telling our muscles to do things. I have a lot of feelings that my muscles will cramp up into a charlie horse but it never happens. Its a bizarre feeling to be “right on the verge” of a cramp and then nothing. OR I feel I have to stretch my legs and feet often and cant figure out why.

Have you had a tight feeling? or that “twitching” as you are falling alseep? Some nights, depending on how tired I am, my whole body will jump and scare the heck out of me. I have had it before over hte years but now it happens more often.

Welcome and good wishes to you and your recovery. Did you have a mild case? Or were you hit hard?

Lori

I am just over a year sice dx and still have terrible muscle spasms. I can set perfectly still and put something on my thigh and wait my muscles will spasm and shoot the item usually the remote off my leg.(really funny to watch)

I was totally paralysed and as i started to get some movement back i could actually feel what i would call electrical impulses – mainly in my hands. Not sure if these aare the saame spasms you are talking about. I still get them occasionally in my left hand even though i have full movement back (2 1/2 months later)

Andy,

Contrary to what your doctors have told you, muscle spasms and facial numbness are indeed “typical” of GBS.

Unfortunately, you will find that most docs are not well informed about this disease. What the “textbooks” say about typical, and what patients actually experience is very, very often not the same.

My advice is to ignore your doctor’s opinion on things like this and educate yourself. This site is a great place to do that. You will find out that there is no “typical” case of GBS and that presentation, progression, recovery, and residuals are highly individual.

Most of all, listen to your own body and get plenty of rest.

Best wishes for your continued recovery.

Suzanne

Great reply Suzanne! Yes, I too have had muscle spasms. Remember, the nerves have been damaged and are speaking a different/strange language 😮 Seems that anything can be “normal” for GBS!!!

My face was numb, my neck was numb, my tongue and mouth were tingly, even my throat was numb and tingly. I lost my appetite as well. I still deal with my neck getting tight, my face going numb from my jawline up to my cheeks, and sometimes it still feels as if my digestive system isnt working the way it should (I describe it as it feeling numb). So as ya can see from the posts so far, this is a very peculiar syndrome and can effect everyone who has it differently (but also similarily). Any chance that ya had really bad headaches before the actual numbness and tingling started? I still get these awful headaches that start at the base of my skull and wrap up and around my ears to my forehead. They are not very often now but I can always tell when they will get bad by the wierd pain that starts in my neck.

One night recently I had overdone things during the day and had a bizarre “Humming” feeling in a band across my foot! It felt like a sci fi beacon pulse (I know that sounds wierd) and I jumped up thinking I had something under my foot! Nothing was there. It would “hum” a few times then stop, then a few minutes later it would start up again. I havent had it happen since, but it was most bizarre.

Agreed. The textbooks certainly are often off-base. For example, my doctor actually showed me the research that said GBS has absolutely no pain associated with it. Give me a break!

I believe that many, many GBS / CIDP people have muscle spasms … even when taking muscle relaxants.

One similar thing I have found is that, as I start to drift off to sleep, I will have a “electric shock” or “major muscle spasm” that strongly contracts muscles, awakening me completely, and often pushing my calf muscles into a cramp.

I only realized this thanks to my wife telling me that many people often have small / minor muscle twitches as they fall asleep. Since GBS, however, the minor muscle twitch has turned into a major multiple muscle twitch. (Apparently I often hit / kick her when this happens, although she has been good about it and understanding).

I don’t trust medical research, especially for something “rare” like GBS. I have found 10x the amount of information and answers on this forum.

Best wishes,
doug

Hi Andy, welcome to the family. Muscle spasms and pain are a normal part of gbs/cidp. just because one has numbness doesn’t necessarily mean no pain. I have found drinking alot of water and eating foods high in potassium is great for spasms and cramps. for instance bananas, avacados, melons and drinking tonic water (for quinine) works well. take care.

In the last week I have noticed these twitches all over my body. They feel like I used to get below my eye pre-GBS but now I can get them anywhere, chest, back, arms, legs, face, etc. Its really annoying.

Another thing that I get is quite different and notice it mostly from my private parts down to the tips of my toes… every so often I will just be laying or sitting down and it feels like I am being electrocuted. Just this sudden and painful electric bold shoots down my leg(s) and lasts for several seconds to a minute or so. I have felt this in my back and arms as well, most frequently being in my back or down a leg or two.

the twitches are annoying! I had them bad last night everywhere! Was trying to fall asleep and kept having little twitches in my toes, feet, legs, arms, hands, back. Argh! I too had eye twitches!! Havent had them since, except everywhere else. But I remember being terribly annyoed by the eye thing and asked hubby if he could see it happening and he said no. After this hit me, the eye thing stopped.

Also, Andy, you mentioned confusion. When I started this I also had moments where I would feel “far away”. I would forget exactly what i was talking about or would feel as if what I was saying wasnt coming out right. I had to pause a lot and think. Felt as if my mind was off on its own in lala land or something. Is this similar to what you experienced?

Wow, this is incredible! Ben fell asleep on the couch the other night watching the Bears game. The next morning, I awoke to him repeatedly screaming my name in bloody Mary. I knew something must be wrong and ran in to find him grasping onto his leg and telling me he couldn’t move it. After massaging the cramp out for 20 minutes, he was finally able to stand up and shake it out. By the end of the day, he said the pain, cramping and twitching had moved to the arches of his feet, his hamstrings, shoulderblades and jawline. I took him to the ER yesterday, and all bloodwork came back normal. His neuro will be arranging for Ben to have a full body MRI. I’ve been so worried about him for the past few days and am so relieved to read this thread and find out this is probably just another GBS surprise! You all made my night! I read this thread to Ben, and we printed it and will have his neuro read it.

Oh yeah, tonight he says the cramps are still “hovering,” but he feels better. I wonder if this will happen every Fall when the weather starts to get colder? Ben is 17 months into this. And yes, I did bring home bananas for him and have been reminding him to take his multi-vitamin everyday!

Love,

Shannon

Yes the change in weather has every year for 26 years brought on the cramps, zings and twitches. It has only been the last few years that I placed it as seasonal. Worse in the past few years so I started noticing more.

I Too Have Always Expirenced Leg Cramps And Spasms I Know For The Leg Cramps If You Sleep With A Bar Of Soap Under Your Sheet Between Your Calves It Helps With Leg Cramps I Read This In A Article In The Newspaper And It Works. I Have Told Other People And They Say It Works Too. Not Sure Why

may sound wacky but even the Urban Legend site couldnt dispute its effectiveness….thanks for the idea and here is a link to more info regarding this:

[url]http://www.reallans.com/mmml.shtml?/002240.shtml[/url]

I am going to try it since i have been making layouts all day (felt good this morning and will hate myself this evening since i am already hurting)

Enjoy!

What an interesting thing to do. Thanks for the tip. We’ll try it tonight, although Ben is starting to feel better again.