Good afternoon
I am into my 4th month of GBS in the feet. I was blessed. I have been going to therpy for 6 weeks 3 times a week. I have gone from a walker to a cane to walking. I found out last week that too much exersise will put you in bed for a few days. My therpist had me over do it and my lower legs were sore and my feet felt sore. This week he cut back and things have returned to normal. all my exersise has been with supervision. From what I have read alot of people with GBS exersise on their own. My Newroligist told me to do everything under supervision as to over do will not make things better. As I said I was blessed with a mild attack but still if I change something I always check with someone that has worked with me (may Gods blessings be with you )

Mochacat ~ a goodly number of us do not have the blessing of being supervised by someone who knows more about this disease than we do! That is the reason we exercise on our own. After not being appropiately diagnosed, then told to go home, stay in bed and go back to work in a year . . . I have received no Rx’d physical therapy. I learned to walk again on my own thru water therapy at the YMCA and yoga classes. I live in an isolated area (medically) and did not have the finances to go elsewhere (couldn’t be gainfully employed!). Alot of us are doing what we can just to survive 😮 Indeed you are very fortunate that you “had a mild case”.

Bunnyrarebit ~ 12 yrs. later and I still get an unexpected “muscle spasm” ~ usually under the right side rib cage. I usually have no warning and often it happens in the middle of reaching for something. I personally find that yoga is the best, gentle stretching for [I]my body[/I]. I wish for you the best in finding “something” which works well for you 🙂

bunny,

I occasionally get muscle spasms in various places too. I’ve found that, for me at least, it usually has to do with being dehydrated. I can double check this by noticing the color of my urine. If it’s not clear or very pale yellow, I need more water.

I now carry a bottle of water with me everywhere and sip often. Hope this is helpful for you too.

Suzanne

You say you are too tired after exercising to go to the grocery store? I’ve been advised to use the store as my exercise. When you go there you are reaching, transferring, picking up different weights, if you can walk, then pushing the cart builds up strength and endurance as well. For me it is my big outing! I’m 9 months out and felt so liberated the day when I pushed the cart down the alcohol isle! I still have to borrow the store scooter to do all the shopping but just getting out of my home is therapy. Activities of daily living provide alot of exercise (sometimes too much!) Days when I am “busy” I don’t do exercises or I just do short periods in between and don’t do them all. Hope this method helps! 🙂

bunny,

No dry mouth for me – I’m a little surprised because of all the meds I take that I don’t get this.

I did have a problem with dry mouth several years ago because of a medication not related to GBS. I used Biotene mouthwash and it helped to keep my mouth from getting dry as often. Hope that helps.

Suzanne

Yeah, my neck gets some real viscous spasms. You know, I have two cats whom like to prod my neck as they lay purring on my chest- good therapy!

My husband who was dx in feb 2005 has extreme muscle spasms and his muscle enzymes are high around 700….the neurologist says its not related to gbs but Im thinking it is…anyone else with the muscle spasms and elevated muscle enzymes?
Thanks,
Amy

Hi I was just wondering if anyone has ever been told that there muscle enzymes are high…my husband was dx feb 05 and has been told that his muscle enzymes are in the 700’s….he also has extreme muscle cramping.

Hi Amy, welcome to the family. what part of se mich are you from? i’m just over the line-just outside of Toledo. i just read an article a few days ago relating to your husbands problems-i will try to look for it and let you know what i find. the short term memory is on the blink again-sorry. can you give us more info about your husband? what tests has he had, dx, treatments-ivig and so forth? the more info the more we can try to help answer your questions. take care.

Hi Amy. I found the info, do a search on Goodsearch.com(gbs/cidp charity) and look under lambert-eaton syndrome. see if that looks like a possibility. its another autoimmune disease, some similar characteristics to gbs/cidp, but has more to do with the muscles and neurotransmitters.

Hi Amy,

I am post GBS now 7 years too. My spasms are mostly in my legs, neck, and sides. I use tonic water with lemon but it does get a little too much sometimes. I have been eating more bananas lately. When I get up in the night to check out the bathroom, I grab a bite or three of a banana and a glass of water.

My legs are the worse. Either leg or both will completely cramp up and I have to get out of bed and push my foot down to start relieving the leg. My feet are cramped into a pointed position and the pain is too much.

As far as exercise, I do it in the morning while in bed. I do about 11 different exercises for 40 reps each. Now don’t worry, I started at 10 reps and worked up. Some bad days I cut down a little but I do try to stay with the 40 reps on each exercise. The key is to do as much as you can stand, but don’t over do and push yourself too much. Just slowly add on each week an extra on or two reps to each exercise. I will be doing this the rest of my life because, if I don’t, slowly I will loose my edge and become more crippled. My PT people in the hospital kept saying: ” if you don’t use it, you will lose it”. When it gets hard to do I remember this.

Hope this helps you,

Judy

I just got motivated to get this fat body of mine into an exercise plan. I have a stationary bike at home, so that is what I have started with. Last night I did 5 minutes. Tonight I hope to do 6 minutes and will keep on increasing it until I fall off the bike :rolleyes:

Occasionally I have muscle spasms in my feet and calves. Darn, they sure can hurt and keep me awake. I found that a heating pad helps.

I’ve just recently had a battery of blood work and will see the results when I go back to my neuro April 2. So more info to follow.

This is going to sound nuttier than a fruit cake but I have people around me who swear it works to prevent leg cramps. They put an unwrapped bar of any kind of soap in their bed near their feet. Dr. Rosenthal (?) mentioned it one Sunday morning on TV also but said there was no study to confirm it. Can’t hurt to put it to the test I guess.

I have a question. If you had a severe case of GBS the first time are you more apt to have it again than if you had a light case? Or is this another unknown?

Mari

Mari, I am a fan of Dr. Rosenthal and would tend to believe what he says. It is worth a try and could help for some smelly feet :p

Very funny Chrissy 😀

I find that a Calcium/Magnesium/Zinc supplement can really help. You need the magnesium/zinc for the uptake of the calcium. My husband takes 2 Kelp tablets and he’s good for a couple of months. In the summer, when it gets hot, he takes it more often.

I hope that you can find something that works for you.

Hi,

Try Quinine for the spasms, I now drink 2 small bottles of tonic water everyday and no longer have any spasms.

Regards Neil