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Living with Polyneuropathy CIDP, GBS, & CMT

Feet on fire


#1

I am happy to say six and a half years later I am here I can walk . Thank God ! G.B.S. did not steal my life nor my ability to move. I still have some side effects like, faitige, tingling and burning feet and hands, (but after a while you get use to it) most of the time it’s mild. I have other health issues as well all have same symptoms. Y I am writing today is my feet will get so cold I have to put on socks (sometime that don’t even help.) I then have to put a blacker over them as well. Then not 20 min later I am taking it all off they are on fire. Just wondering anyone else feel this. Sometimes it quicker sometimes it longer, I hate this feeling. Just curious if others fell this.


#2

Hi from Denmark Kel, good to hear your update.
I’m three years out and like you getting along very well. There are some souveniers from GBS that seem to be here to stay but as you said, you get used to them.
GBS has given me a thankfulness for what I CAN do now, simple things like getting up easily from a sitting position, walking on grass or sand and naturally walking unaided albeit perhaps not as far as I could before, but then I am getting a bit long in the tooth. I celebrate my victory over it every day.
Sometimes my feet fell cold but that’s all, but they always feel like they’re packed in sand. There is another GBS man in my training group whose feet feel like this also.
Nice to hear from you. Mary


#3

I have CIDP and for the last 10 years my feet act the way you’ve described. There is no rhyme or reason as to their timing. I’ve learned to live with problem. Maybe GBS is different. Wishing you relief.Jim


#4

Hey Kel and everyone else!! thanks for sharing your lastest experiences, they are particularly helpful for me. I am in Northeastern Indiana, and the weather here is quite extreme, high humidity, extreme hots and colds, it wreaks havoc on my GBS symptoms! Right now my feet are burning, I do have my heavy AFO braces on, but if I do not, I cannot move from my spot! i do experience cold feet, and if i put on a blanket, my feet are burning within a few minutes, painfully. then back to cold. it is very frustrating. and no medicine really takes away any pain for me either. Lyrica takes away the extreme stabbing pain, but even opiods don’t do anything but make me dizzy and silly but I still feel the slight, nagging stabbing in my toes. Anyone have anything they do or take that helps? Would be a life saver! THe pain is just so sharp at times i cannot do anything but take off everything and kind of lightly rub my feet and try not to cry. It would help if anyone else feels that way or did. and kudos on walking on sand!!! i cant even imagine grass with my AFOs on, (i have severe balance issues right now from when my feet went all funny from being a para during the early months of GBS) let alone walking bare boot or in sandals or shoes!!! :smile:


#5

Yes to all the above. CIDP is like multiple choice test. When I read the post I always say the answer is yes to what everyone is experiencing. Thanks for sharing. I have just passed the 3 year mark and if I look back the progress is fantastic. But I say to myself? All that treatment, therapy, medications and support. Yet there are moments that my pain is so bad that I cuss, cry and beg God for mercy. There is no answer to what we go through. Everyone who suffers from GBS/CIDP have the same story when it comes to chronic pain and fatigue. This condition is no different for anyone from one year to twenty years. Just when we thinks things are going good and we get are hopes up. BAMM!!! Then comes the setback. And it’s always that freaking, burning, tingling, tightness, numbing, instability. The list goes on. You and I are the only ones that feel this. I guess as long as nothing gets different than what we feel then that’s the new norm. I guess there is no answer because there is no cure. Continue to find ways that helps us redirect our pain and then move on. I hope that research will find a cure. So I will leave you with a few redirects that might minimize your pain levels.
DIET.
RECUMBENT BICYCLE (stationary)
WATER. (my favorite )
SUPPLEMENTS (lipoic acid may help reduce pain research on google along with other nerve pain supplements.
PILLOW ELEVATION
SOCIAL ACTIVITY
ACTIVITIES OR HOBBIES TO KEEP THE MIND BUSY
TENSE UNIT (another favorite I use a tense unit all the time to keep stimulation going. A good tense unit is the 7000 on Amazon for 24.99 to 29.99. depending on your pain level they different size pads I use a 2x4 or 4x4 pad on my feet. I also find the Electroid sock that you wet can be very beneficial. Anyway best of luck and may Gods blessing of healing and comfort be with all of you now and during your most difficult times of pain. Jutty


#6

Feet issues are something I have to but mine may be related to a spinal cord injury I had back in 2004. It also could be a combination of both, GBS effects and short circuits I have from the injury. I had GBS 35 years ago and only found out 3 years ago that I have side effects showing up now. My doctor calls me an “interesting” case. He is polite. I would call me frustrating. Challenging at best.