Looking to connect with people who have non-diabetic neuropathy

Hi, my name is Mary and I have been dealing with neuropathy for a few years. I take 400 mg of Gabapetin 3Xday. I also have a bottle of 100mg that I had left over from a different dosage that I use 1 at a time if I am really struggling. I have had to give so many clothes away because they hurt. If my neuropathy is acting up, I find a hot bubble bath or bath with salts. That seems to soothe things down. I had a full length Artic fox coat that I finally am getting it repurposed into a throw. This was the only surface I could rest my legs on. This neuropathy thing can drive one mad! It is so relentless and so demanding of one’s attention. I am using a mink coat for my legs now and it isn’t as good. The fox is long and breathes where the fur of the mink is short. If you have a coat or want to pick one up to repurpose, I could give you advice on what works best. Have a great Labor Day Weekend!

So sorry to hear this. I did some reading after seeing this, and I do not have diabetic neuropathy. I have idiopathic SFN. I'll keep searching to see if it has the same risks of fracture. No one could believe - or figure out - why my heels fractured. This was seven years ago. I wore two cam boots for 3-4 months, and they gradually healed. Long before my SFN diagnosis.

Have you had a bone density test recently? Any more problems with fractures or sores that don't heal?

Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.

@user_ch98d0b5c have you found anything that helps with the pain?

I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?

I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?

John

Yes I have it very bad in my feet and legs. Feel weakness in legs and the pain is unbearable. The tablets don't work and my life has just changed dramatically. I hope you are not as bad as me.

Hi,
I comment over and over with the same thing. Sorry, do not want to bore anyone, just the newbies need to hear ...CBD works for me and THC cream at night. Cannot take THC orally...haha getting "high" days are over for this chic! I tried with and without and the stuff is pricey, but it WORKS (ON FOOT RUBS)! Good luck, sorry for you and me!!