Living with Neuropathy - Welcome to the group

Don't laugh... I may have hit on something by accident that might help some of you. Most nights I use a foot cream on my "neuro-pathetic" feet just to keep them soft. I have the type of neuropathy that causes me to feel everything; for example - I can't stand on the bathmat in my tub/shower as the little nubs really hurt. I get sharp, shooting pains in my toes and it wakes me up at night several times. I've tried gabapentin - didn't work at all! SO... the other night, I picked up my Ben Gay - by accident - rather than my foot cream and before I realized my mistake (how'd you miss the smell?) I had rubbed it on my foot and ankle. It felt kinda good... so I rubbed it on the other foot. I slept through the night. The first time in many a month. I thought this likely was a fluke, but decided last night to try it again... it worked again and today both feet feel some better. Usually, night time is when my feet bother me most so I was delighted. Don't know if it is a fluke or not, or if the Anti-neuropathy fairies have visited me while I sleep (I'm Irish so it could happen) but it seems like a cheap thing to try. I know it sounds goofy but if putting a bar of soap between your sheets wasn't considered too "strange" a suggestion - maybe this might work for somebody besides me. I doubt whether it would work on feet/ankles etc. that have open sores, though... that might really hurt.

Hi Everyone, I am very glad to have found this group. I was diagnosed with neuropathy when I started developing numbness in my hands and feet about 10 days after COVID J&J vaccine in 2021. And since then the neuropathy just comes and goes like a chronic condition. I am not even 40 years old and it is hard to explain to people about my neuropathy. I am looking into alternative treatment options for neuropathy and looking to hear if anyone had any good or bad experience with them. Thank you.

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

I have neuropathy in both feet. I am a type 2 diabetic and suffer from PAD peripheral artery disease. I’ve had both femoral arteries rotorooted. I’m taking pregablain for my feet I 79 years old. No improvement in my feet. Procedures relieved leg pains.

I keep seeing clams on social media that there are supplements that will heal my foot nerves. Is there truth to these claims? I am taking vitamin B12 also.

Bob

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John