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Living with Polyneuropathy CIDP, GBS, & CMT

Bottoms of my feet


#1

The bottoms of my feet feel like tiny "bubble wrap" packaging material. That may sound comforting but it is quite the opposite ! Barefoot in the shower is almost unbearable. Anyone else experience this sensation?


#2

My feet are very sedative if I touch anything with them. I wear my sneakers as much as possible


#3

Ricky, I'm almost 3 years out and both my feet still feels numb. The tingling part has died down a bit. You'd get use to it eventually. But both of my feet still feels tight when I walk, sometimes a bit uncomfortable.


#4

when i wear shoes i feel like there are little pebbles in my shoes. 8 months out.my DR said it is a 2 year recovery process.

Each case is so different hang in there it will get better.


#5

My husband was diagnosed 2 months ago with GBS he can’t walk and has been in bed just got out of rehab after 6 weeks has minimal use of his hands it is a crazy thing never heard of this before just hoping for the best


#6

When I walk for a bit it feels like I have a rolled up sock under my foot.


#7

Shower was and sometimes really bothers me still. When I was sick it was unbearable. For me it felt like ppl were cutting me in the shower on legs and arms. I was queen of the 2 minute shower!!
Have you tried using shower shoes or flip flops it may help? It takes a long time but it does get better. I have good days and bad. But I live in shoes always never barefoot.


#8

How long did it take for any improvement with GBS even just a little


#9

For me, the first six months were tough and was very slow going. Then things seemed to gradually but steadily improve. Over the next six months I saw tiny improvements everyday. After that first year things slowed down, but I would still notice little improvements. Something would be easier to do, something didn't cause as much pain as it used to. I know it is so hard to be positive everyday, but stay strong it does get better! Keep fighting for recovery and celebrate the tiny victories, you earn them!

SLS7144 said:

How long did it take for any improvement with GBS even just a little

#10

I



Charlotte said:

For me, the first six months were tough and was very slow going. Then things seemed to gradually but steadily improve. Over the next six months I saw tiny improvements everyday. After that first year things slowed down, but I would still notice little improvements. Something would be easier to do, something didn’t cause as much pain as it used to. I know it is so hard to be positive everyday, but stay strong it does get better! Keep fighting for recovery and celebrate the tiny victories, you earn them!

SLS7144 said:

How long did it take for any improvement with GBS even just a little

#11

My feet were unbearable at the beginning. I'd often feel like I had no toenails and that my toes were going to split open. I'm happy to say that aside from a very slight difference in my big toes they are back to normal. From what I remember it was about three months before I started wearing real shoes again, and they had to be loose. Over the next year I got back to being able to wear whatever shoes I wanted. One thing we did in physio for decreasing hypersensitivity in our hands was to run different material over them ever day for a few minutes and think about what it should really feel like as we did it. We'd use cotton, terry cloth, velcro, wool, etc. Just find stuff with interesting textures (some that irritate you) and rub it lightly over your feet. It was very simple, but it did help over time. Massage is good too. I found that the muscles in my feet became a lot tighter and need a good massage. Unfortunately a big part of the solution is time, but make sure that you are eating a healthy diet with a lot of healthy fat, and supplementing at least vitamin D.


#12

Mmy husband started a rehab program last week hopefully it will help and start making him feel better he will be there for about 8 weeks did anyone go through a rehab program and if so did it help




meditate1 said:

when i wear shoes i feel like there are little pebbles in my shoes. 8 months out.my DR said it is a 2 year recovery process.

Each case is so different hang in there it will get better.


#13

Regarding the rehab. I finish my 20 one hour sessions tomorrow. I requested 3 more weeks. I believe it has helped tremendously. I feel much stronger after leaving and it continues to get better each week. It is all about strengthening the legs and balance. I asked how hard should I push myself on the days I am off. Their response was to work as hard as I could. I now bike, swim, and last week I started chipping and putting, Today I played 9 holes without much trouble. All this time on my feet makes them hurt quite a bit, but they were doing that anyway, I was diagnosed Dec 13th, so feel I am progressing extremely well. VERY FORTUNATE


#14

i had 5 months of rehab, 5 weeks in-patient, 10 weeks at home, and the rest out-patient. The therapy was extremely helpful. Each group focused on a different goal depending where I was in my recovery. I went from barely being able to sit up to walking with a cane.


#15

Congratulations! been and still in rehab, for few hours more, and completely agree with you, that helps so much that I could said that is the first steps to return to your live, I was diagnosed Dec 19th, did a short hike a week ago, but ended with a week of fatigue. After your comments, feeling more positive and with hope. Another Fortunate



Rickyboby said:

Regarding the rehab. I finish my 20 one hour sessions tomorrow. I requested 3 more weeks. I believe it has helped tremendously. I feel much stronger after leaving and it continues to get better each week. It is all about strengthening the legs and balance. I asked how hard should I push myself on the days I am off. Their response was to work as hard as I could. I now bike, swim, and last week I started chipping and putting, Today I played 9 holes without much trouble. All this time on my feet makes them hurt quite a bit, but they were doing that anyway, I was diagnosed Dec 13th, so feel I am progressing extremely well. VERY FORTUNATE


#16


Pato said:

Congratulations! been and still in rehab, for few hours more, and completely agree with you, that helps so much that I could said that is the first steps to return to your live, I was diagnosed Dec 19th, did a short hike a week ago, but ended with a week of fatigue. After your comments, feeling more positive and with hope. Another Fortunate



Rickyboby said:

Regarding the rehab. I finish my 20 one hour sessions tomorrow. I requested 3 more weeks. I believe it has helped tremendously. I feel much stronger after leaving and it continues to get better each week. It is all about strengthening the legs and balance. I asked how hard should I push myself on the days I am off. Their response was to work as hard as I could. I now bike, swim, and last week I started chipping and putting, Today I played 9 holes without much trouble. All this time on my feet makes them hurt quite a bit, but they were doing that anyway, I was diagnosed Dec 13th, so feel I am progressing extremely well. VERY FORTUNATE


#17

For me 3 years after, my feet at night are like walking on giant blisters.... painful, unbalanced, over sensitive and in places desensitized. It becomes more tolerable as the day progresses. If there is a positive to share it's that the first year out I couldn't tolerate blankets, socks, shoes, anything extra that touched my feet. Progress is slow..... but it's still progress.


#18

I never know what my feet are going to be like after a year with GBS. I usually forget about them during the day except if they decide to give me some burning sensations…but they never last long. At the moment it’s a cross between rolled up socks and sand but I only thought of it because you asked.


#19

Now that we are having warm weather I started wearing sandals again but after 2 or 3 days my big toes started burning underneath as they did last year . I went back to sneakers and sport socks and they’re fine again. This leaves me to believe that I shouldn’t go without socks yet ( I’m a year in)
When the burning stopped last year I thought it was the end of that phase and didn’t register what foot wear I was using.

Is there anyone else who can add to this?:sunglasses:


#20

I haven’t considered trying sandals because I have to wear an AFO on one leg. For me the big summer change will be buying longer socks so the perspiration under the AFO won’t irritate my skin. I’m a little self conscious about wearing the AFO with shorts but I’ve gotta be comfortable.