Living with Neuropathy - Welcome to the group

Well, we speak the same language, because I understood it all. I remember having the ‘rocks’ in my shoes. Seems like 3-4 years ago. And, not sure if I had socks on or not. Then weird sensations in my feet and ankles at night, starting about a year ago. This summer, I didn’t feel balanced when I walked. Bought Hoka shoes. Helped until it didn’t. And, now numbness in both feet, left foot worse; don’t feel anything under that foot at times. Started with my primary doctor. She said take B12. Got a a bit worse and got a referral for neuro. Blood work and nothing to be done. Cannot cure numbness. Gave me lopoic acid. I started using a cane about 2 weeks ago. Still slip-sliding away. Last week, a podiatrist took a look at the feet, a few questions, a quick poke with a pointed tool, and said nothing to be done. He said I should not have let myself become dependent on the cane. 🤔 I slipped several times getting into the building, with the cane. And, today I just put two walkers together. Much safer feeling, legs still feel heavy but moving better and faster. Left foot feels stuck, when I can actually feel it, and stays a bit behind. The stairs are a nightmare and I’m getting myself together to just move downstairs. Getting up and down the stairs, hardest part of my day. I’m sorry to hear you have pain. I have been reading people are given gabapentin and it does not work for most. I haven’t read too much that’s encouraging, but I am taking the supplements. Adding B6 and B-complex per podiatrist. Haven’t been on anything long enough to gage if it helps. What has helped a bit….I do use a foot massage machine and a recumbent bike. Massage my feet with lotion with menthol. Wear my old Sketcher's inside the house now. I haven’t had any pain really. Except for the ‘rocks’, I just went right into numbness and quickly needing a cane. I haven't really accepted it, because the numbness progressed so fast. I can drive. Right foot is much better. Just cannot get out like before. Maybe I’ll try once I break in the walkers.
I hope you can continue to move a bit with a walker. I’ve ordered a portable elliptical machine, to pedal from the couch. Ha! Anything that makes the blood flow. I come on here a bit everyday. Only people who understand what we are going through. Best wishes to you and thanks for sharing.

Did you try gabapentin for the pain? I take 2400 mg per day.

Hello Cody Potter 62 as to your question, do I take gabapentin for the pain? Yes, I've only been taking 600 milligrams because I have third stage kidney disease so I was told that's all I could take. But then I went to the Mayo clinic and they said I could take 12 to 1400. So I'm increasing slowly now. I sure hope that helps. Is the amount that you're taking working for you? Thanks for your reply, carolyn

Lamkj5 I'm sorry I responded to someone else as a mistake. I'm so new with this. I don't know if I'm going to get the hang of it or not. You would ask me if I take gabapentin and my reply was to someone else. I'm sorry but what I was trying to say is yes but I have third stage kidney disease so I was told I could only take 600 MG but after visiting the Mayo clinic they told me I could take 12 to 14. Thank you for responding. It's interesting to me that you can take that amount. How high can you go on gabapentin do you know? Is the amount you are taking working for you. What kind of symptoms do you have and how long have you had it? Sorry about the mix-up, sending it to the wrong person. If I keep practicing I may get it right. LOL carolyn

I take 800 mg every 8 hours. It works pretty well but my feet definitely are not perfect. I think the gabapentin has caused my imbalance but I can’t do without it. I wish you good luck and blessings as you travel this rocky road.
All the best,
Bonnie

Hi, yes Mayo clinic just had me start on B12. Hopefully I have good luck with it. Thank you for letting me know. Good luck to you and keep on moving. God bless you

for years I have been under the impression that that compression socks are helpful with neuropathy. do other people use them? My feet seem to disappear, have less feeling when I wear the sox. does the compression restrict blood flow? nerve stimulation?

Hi @nekcarolyn, I've had neuropathy (numbness only, no pain) for 40+ years but only bothered to get diagnosed in 2016 because all of my previous docs had said there aren't any treatments for the numbness, only the pain. In 2018 I was diagnosed with lymphedema and had to start wearing compression socks to control the daytime swelling in the legs. The compression socks sometimes help me forget I have neuropathy because they have the constant squeeze on my legs but I don't thing they actually help my neuropathy. You might want to scan through the following discussion to see what other members have shared on the question:

-- Neuropathy - Do Compression Stockings Help?
https://connect.mayoclinic.org/discussion/neuropathy-25/

I am 84 years old and have had neuropathy for many years before I knew what it was. I have borderline type 2 diabetes which did not cause the neuropathy burttmay have worsened it. Has anyone found anything that helps?
There is no doctor that specializes in this in my area. The only thing my doctors have offered is gabapentin or pregabilin; I take 900mg gabapentin & it is not keeping the pain under control.

Welcome @lakelariet, The Foundation for Peripheral Neuropathy has a pretty comprehensive collection of neuropathy treatments including the traditional drugs, complementary and alternative along with a list of supplements which have shown to help with neuropathy for some folks - https://www.foundationforpn.org/therapies/.

You might also find it helpful to scan through the list of discussions in the Neuropathy Support Group. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/neuropathy/.

I did a search of the discussions using "neuropathy what helps" if you want to look through these specific discussions - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

I'm soon to be 82 and I think it really helps each of us to learn as much as we can about the neuropathy condition and what treatments are available. I've always been labelled as pre-diabetic and do think it has played a part in my neuropathy even though my diagnosis is idiopathic small fiber peripheral neuropathy.

Do you mind sharing your symptoms that bother you the most?