Living with Polyneuropathy CIDP, GBS, & CMT

After effects from GBS years down the road


I am sorry 14 months end of January. My shoulders and arms ache and I think I must be experiencing more fatigue but you have to eat right and taje a b complex. B12 also helps with energy.


I am 1 mo out of GBS. How long was the memory problem for you?
When were you able to go back to work?
I am needing to rest for 2 hours after every 1/2 hour of exertion.
I can’t see myself back at work in 3 wk.


Oh so you are just starting. It took me 5 month’s to return to work. Memory was bad for 6 or 7 months. Still have to remind myself of things. Residuals keep me worried. Twitching lasted all over for 6 months before it slowed down. Still have some but not as bad. Numbness buzzing. Etc. You still have a few months.


Was it difficult to think? I shut down after 1/2 hr. I do not know what to do. I get tired with everything. When did you start driving the car? The dizziness ,fatigue ,thinking prob and memory prob has me scared too drive car. Did your doctor do the disability papers for you? Did they hold your job for you? Did you slowly transition into your job and are you back at full capacity now?


Yes it was. I didn’t return work until 5 months later part time. Then I didn’t drive for four months from onset. I am a nurse so didn’t have to worry about job.


Neuro just wrote back saying mental fogginess if from fatigue. .Is there something to do for the fatigue? Thank you for writing me. I have no on one to compare notes with.Are you still part time? or now full time?

Hemal Mehta


I am still part time. I had so much pain in my legs and they felt like strteched rubber bands. My stamina isn’t what it was. I has taken 14 months for me not to hurt so bad. I do still suffer fatigue but not as severe as you are now. I had so much muscle weakness my legs woukd shake if I was laying and tried to raise them. I woukd shake in my arms when I tried to prop myself up on them. So don’t get to upset if you are still struggling. You may be the excepting. Some people were able to do a desk job at 3 months post onset but I wasn’t.


Hi Angela

I am able to do task for 15 min and then need to rest.At the beginning did you have it like this? Will this improve too? I have started developing shortness of breath with activity this week. Did you have this?


I did have the same issues. Except I could not walk for about 3 weeks and then couldn’t hardly walk for 3 months. I couldn’t even hold myself up and when I tried to walk across the doctor office I had to get a wheelchair. So it is normal. It will get better in a few months. Take as much antioxidants as you can. Vit d 3 if deficient below 30 and take B complex for energy. How’s your muscle twitching going or did it completely stop by now. I believe if you have aome axonal damage you will have twitching. If just myelin not so.much. I take alpha lipoic acid and r lipoic acid niacin vit d3 vitamin E vitamin c fish oil and omega 3.


What are your autonomic issues?


so breathing diff is normal with this with activity?
no twitching at this time.
what antioxidants should I take? I am taking po fe, vit b and bit d.
Thanks Hemal Mehta


I was having dizziness, and urinary incontinence and low BP and hr
Did you have that? Hemal Mehta


Being short of breath during activity was normal as long as it isnt happening when you are doing nothing. All those vitamin you are on is good. I did have severe autonomic issues. I had gastroparesis for almost 4 no ths lost a lot of weight. Had low bp when standing high heart rate and night sweats. Felt like I had urine retention but luckily it only lasted short time about a week. The others lasted 4 months but after the first 3 months they started improving. Until the myelin recovers your vagus and vagovasal nerve you will have those issues. For me I was able to start eating normal after 4 months and my bp stabilized around the same time.


I got hit in March, 2017. Could not walk, numbness in legs, knees forearms. Right triceps completely useless. 9 months later, 75% strength back in legs, however, they are still numb from the knee down in the front. Right arm strength returning. I could not shower or sit on the jon without help from my wife for the first 3 months. Now, I am self-sufficient, working in the yard and on my boat. Just got off the 3 wheeler and back on my bicycle, albeit very careful when I dismount. I am being tested for muscle enzymes every 3 months to monitor them in case I have CIDP. So far my Neuro says it was GBS. There is hope for improvement in my case. I recently had another bad cold (my initiation to GBS was influenza A). I was scared it would hit me again after the cold. It did not. I am cautiously optimistic. Best wishes…


I am very happy that you are able to do more now and take care of yourself. Did you have muscle twitching duirn your GBS? Mine has slowed now and I go long periods without feeling any. So glad because I hated them. I am still trying to reach the stamina I was before illness but glad to be where I am. Let me know if you need to talk.


Hi Greenpea. I had those memory problems, shortness of breath, and so much fatigue. I am a pharmacist and it was so difficult to go back to work because of the standing I do all day. I didn’t have too much FMLA so I had to go back pretty soon but they let me do a week of half days at the beginning. I needed a couple weeks of that but that’s all I got. I had to sit some and could not run around like usual. I would even get dizzy going around shelves so I tried to make less trips and not turn corners sharp. I did what I could and then would be wiped out for a couple days after I worked a couple days. Luckily, I was part-time. Can you start out part-time? I was still all I could do. If you are still dizzy, check into special PT for that. I found a PT who specializes in balance disorders and they worked with me and gave me special exercises which fixed my dizziness and balance. Apparently the nerves in my face affected the muscles in my eyes and that threw off my balance. Once that was fixed I could drive and eventually run again on a treadmill. Getting back into work again was a real challenge with tough recovery periods but I made it and eventually it got easier and easier. When are you looking at going back?


I do not remember any twitching. Sorry for not replying sooner. Had shoulder surgery and fall and winter were PT and Florida and other stuff. I need to check this site more.


This is a little late, health care in good ol’ us is all about the money, in my area if you have no insurance or cash (payment). You don’t get seen. 1 yr. After I got diagnosed with g.b.s I lost my job, and insurance. So now I need a nero dr. A rheumatologist, and an infectious disease dr. I was bit by a tick, I now also have Lyme disease. I suffer daily. BUT no insurance. So I suffer sometimes menaly and physically. I thank God for the drs. I do have. But they are limited. No I do not qualify for gov. Funded insurance. So enough,rant over. The tick bite was the infection for the g.b.s. to sneak in and wham. All please find a way to feel better and live life to the fullest. Try new things sometime it will amaze you (I mean in alternative meds) you all have a good day stay positive, stay strong


It’s been 5 yrs now. Severe pain and numbness in my left foot, moderate pain the the right. Very sensitive left leg to any sort of touch. Cramping, twitching, terrible memory, balance is crap, brain fog, tired. Probably more but as I said my memory sucks!!


msw, I was blessed with very little pain after the recovery started. It has been over 30 years now. other age related pain for sure. Twitching was never an issue until I hurt my neck back in 2004. I suspect that the residual effects from GBS enhanced that. My family doctor calls me an interesting case! Hope you get better. Never give up or in. Keep doing in some form or another.