Living with Neuropathy - Welcome to the group

I add my welcome to the new and familiar members, and am excited about having this group dedicated to neuropathy. For those of you who are new to Connect, you may be interested in reading through this discussion where many have shared great tips and thoughts. Join in.

Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

Hi I am new to this group. I have a strange form of neuropathy that stemmed from nutritional deficiencies that happened in 2012 when I had a virus and painful cramping and then all the food came through me undigested. My feet were blue and I lost over 35 pounds but the gastrointestinal doctor did nothing to help me get nutrients. She couldn’t figure out what it was but in retrospect I am very frustrated because by not getting any nutrition to me she caused this to happen to me. I have nutritional neuropathy that got better after 7 a half years but ever since I received my second COVID vaccine and had scurvy from malabsorption in 2021 the front of my lower legs starting at,the knee and going down the front and inside of each calf I have hot skin and vasodilation. My legs are bright red and so painful in the front but normal and while skin in the back. I have one doctor out of state who is a vitamin guru but he is very busy and not in my city. We communicate by text.

I have damage to my autonomic nerves and it can improve if it is treated quickly. I got better initially and then COVID and a crazy misdiagnosis and hospitalization caused me to have a relapse. Does anyone else here have nutritional neuropathy or neuropathy brought on by nutritional and vitamin deficiencies z.

I use fans and have been for years. I sleep on top of the bed and don’t cover my legs or feet from the thigh down I use Cerave cream that is cool on the soles of my feet.
I had a wonderful doctor but he lived and had two hospital appointments in my state and his home state. When COVID started they wouldn’t let him travel back and forth so I lost him.

Here’s something we tried that really helped me very much with the soles of my feet.
It’s a cream called Biafine. In the US it’s sold by prescription as a “ medical device “ because it’s used by people who have had radiation treatments and have damaged their skin.
But there’s a company in France that takes US credit cards and they change only 30.00 for a tube that costs 82.00 here. You don’t have to use much and I honestly swear that this cream helped restore the feeling in the soles of my feet and stopped the burning
Company is called Avibon but you can Google buy Biafine in France.

I took LDN and it did not do much for me but with neuropathy it is different for everyone so please give it a try. My specialist touts it I had no negative side effects but it did not help because I have erythema and the front of my lower legs are bright red down the front and inner side of each calf starting with the iinside of my calf’s. The back side of each leg is “ perfect “ good luck to you

Thank you very much. I will check in with that website and try it…….anything is worth a try. Appreciate your response!❤️

Thanks so much for the ice socks info. I’ll order some from Amazon to try.

I am reposting my response to another member below because I see they posted 14 months ago and you are having a current conversation
Please try this out and yes we have to educated the doctors for sure!

Here’s something we tried that really helped me very much with the soles of my feet.
It’s a cream called Biafine. In the US it’s sold by prescription as a “ medical device “ because it’s used by people who have had radiation treatments and have damaged their skin.
But there’s a company in France that takes US credit cards and they change only 30.00 for a tube that costs 82.00 here. You don’t have to use much and I honestly swear that this cream helped restore the feeling in the soles of my feet and stopped the burning
Company is called Avibon but you can Google buy Biafine in France.

I took LDN and it did not do much for me but with neuropathy it is different for everyone so please give it a try. My specialist touts it I had no negative side effects but it did not help because I have erythema and the front of my lower legs are bright red down the front and inner side of each calf starting with the iinside of my calf’s. The back side of each leg is “ perfect “ good luck to you

👍🏻👍🏻 I do hope they help you. I meant to say that you can’t walk on them because they will rip out at the seams. I also put refrigerated Cerave moisturizing lotion on my feet before I put the ice socks on.
It also helps to have more than 1 pair so you can swap them out during the overnight hours. Very best of luck & relief.

Welcome @bobo333, It sounds like you have been through the wringer trying to get your neuropathy diagnosed and treated. My neuropathy has been with me many years and started in my toes as numbness. I've never had any pain with it, just the numbness and some tingling at times. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I don't believe my neuropathy was caused by nutrition or vitamin deficiencies but I do take vitamin supplements known to help with neuropathy in hopes that it will prevent any further progression. Here's some information on this cause for neuropathy:

-- Nutritional and Vitamin Deficiency Neuropathy:
https://www.foundationforpn.org/causes/nutritional-and-vitamin-deficiency-neuropathy/
While you wait for other members to respond to your question, here is a search of Connect showing the posts and discussions by members mentioning neuropathy from vitamin deficiency - https://connect.mayoclinic.org/search/?search=neuropathy+from+vitamin+deficiency

Thanks for the tip about putting Cerave on my feet before putting on the socks. Also, can I throw them in the washer?

I only hand wash my ice socks as they will last longer. The material isn’t strong & can pull out at the seams.