Living with Neuropathy - Welcome to the group

Very helpful and encouraging!

Hello, In certainly feel for you . I have just joined this group when I read this as I wanted to suggest something that gives me relief, even though I just might be creating other problems. I have this unbelievable itch on the bottom of my feet and the only wayI can tolerate the attacks I get is to immerse the foot into ice water…sometimes for a couple of hours.
As you said, the gabapentin and Lyrica do not help in the small dosage I can manage without getting exceptionally “loopy” as you call it.
I hesitated joining this group because I do not suffer as much by any means as most of the people posting here. It’s really sad to see.
In fact all I know is that I have this “unscatchable” itch in varying degrees of severity occurring randomly though not at all as often as the other sufferers here . My Doctor has tagged it as Neuropathic, in that nothing resolves it other than time.
I was prescribed Lyrica, then Gabapentin as a more forgiving drug, and have have neurologists declare that my nerves are working just fine.
So I continue to record them for the last 5 years, carry freezer blocks with me when I can and hate every moment when I have an occurrence, with my feet in that freezing ice water for the ones above a 6 out of 10 on the discomfort scale.
So when things get really bad, try the ice, for it will give you relief until the the “attack” subsides.
I just wish I could take a pill or something that will act in say 5 mins, as 1- 2 hours takes a lot of time away from any day and is exhausting to live through.
Cheers

Welcome @dyawch1, Thanks for sharing what helps you with the itching. There is another discussion you might want to join in on the same topic here started by @artscaping:
--- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/

Do you have other neuropathy symptoms besides the itching?

Thanks For the welcome John.
Actually I do not and in fact I have no other illness that can be linked to the itch . It’s a real mystery to me …and obviously also to my Doctor etc.
It’s just causes a lot of anxiety when it happens and makes any travel concerning.
Cheers

Diagnosed 3 days ago with peripheral polyneuropathy after EMG and nerve conduction. Several months of tingling and aching in feet and calves. Also, soles of feet feeling hot. It's come on quickly...I was totally healthy, no diabetes or any significant health issues. I'm still trying to figure out why and how. Meeting with my dr next week to further discuss findings and path forward. It's been devastating news for me and I already feel limitations because of pain. Hope to find some hope and peace in your group. Thank you

Welcome @gotosarah, I'm glad you found Connect. You are definitely not alone and hopefully you can find some answers and learn from others experiences. I have idiopathic small fiber PN that developed gradually over 20+ years so I can imagine how you must feel to have all of this change over a short period of time. There is another discussion where you can meet others discussing polyneuropathy and learn what they have shared.

--- Idiopathic Polyneuropathy: My endless journey to a near-diagnosis: https://connect.mayoclinic.org/discussion/idiopathic-polyneuropathy-my-endless-journey-to-a-near-diagnosis/.

Another site that you might want to bookmark for learning more about neuropathy and things you can do to help yourself is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Can you give us an update after you meet with your doctor next week?

Thank you for these links. I will check them out and share what dr advises. Thank you again for accepting me into your group.

Hi. My name is Jan and I have peripheral neuropathy in my feet. It seems to have been getting worse until just recently when my doctor ordered some blood tests and I found out that I am very high in vitamin B6. I have been taking B6 off and on for a few years but a week ago I stopped. It seems like my neuropathy is slightly better but I'm not sure if it's only in my mind. B6 has been shown to cause naturopathy if you have toxic levels in your blood. Has anyone else had any experience with this being true? Also, some people have neuropathy symptoms just from taking any B6 supplement. Not to worry about B6 you get naturally in foods.

Hi Jan @janetlee23, Welcome to Connect. Sorry to hear that you have joined the PN club. You are not alone, there are a lot of us with varying degrees of peripheral neuropathy and other varieties and conditions. I shared my story in another discussion here – https://connect.mayoclinic.org/comment/310341/. There are a couple of other discussions on vitamin B6 that you might want to view.
— Body making too much Vitamin B6: https://connect.mayoclinic.org/discussion/body-making-too-much-vitamin-b6/
— B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

Do you have pain with your neuropathy in your feet or just numbness and some tingling?

Hi, I'm Dawn. Diagnosed (after several doctor visits and tests) with peripheral polyneuropathy, which has become much worse over the last year. Have a lot of balance issues and fall fairly frequently. Try to get exercise by going up and down shopping aisles (because I can hang on to the cart and pretend I'm walking somewhat normally), but if I do too much of that, I'm awake all night because of unrelenting pain in my legs. Does anyone else experience that? On Gabapentin, but not sure how much it helps. So glad to find this forum for support and information. What a frustrating diagnosis! The neurologist essentially said, don't know why you have it but that doesn't make much difference - there's not a lot you can do about it.