Living with Neuropathy - Welcome to the group

I have had Idiopathic Small Fiber Neuropathy in my feet for over 3 1/2 years. Took Gabapentin, Duloxetine and Pregabalin for the pain and got no real results. Currently for the past 2-3 months taking nothing. I have long periods of flares were my pain cant get pretty bad and then I get these periods of what I would call remission were I have very little or no pain at all. Anyone suffer from the same on and off symptoms of PN? I have no clue what my triggers are.

Hi @dbchip, There are a couple of discussions with symptoms similar to yours that you might find helpful:

-- Neuropathy that comes and goes: https://connect.mayoclinic.org/discussion/neuropathy-that-comes-and-goes/.
-- Neuropathy symptoms come and go - is this typical?: https://connect.mayoclinic.org/discussion/neuropathy-symptoms-come-and-go-is-this-typical/

Sorry about what's going on with you. This is a complete guess on my part, but you might want to keep an eye on if the sensitivity turns into numbness which may indicate a form of neuropathy. As for shoes, you might look into finding an athletic store with knowledgeable staff (very hard to find) and mention you need walking/running shoes that help with sensitivity/numbness maybe. Socks also make a difference. I am lucky in the sense there is only one such store about 15 minutes away from me in the area here in Akron, Ohio. Beginning May I will be talking to my neurologist more about shoes and socks since my neuropathy is progressing very fast.

Thanks ..good advice …socks are important as you mention ..as are sports shoes ..Before b/c ski boots and right fit was so important..now years later, its neuropathy..go figure..

Neuropathy is mainly caused by alcohol. It robs nerves of their insulating MYELIN. I learned about myelin after getting trigeminal neuralgia from blowing my sax too much as an 82 yr old. I have an artery rubbing on the trigeminal nerve . It has rubbed off myelin in one spot. If I like to pay $50,000 a brain surgeon will happily insert a packer between.
In the meantime pain is stopped with cabamazepine. Waiting on an MRI to confirm. Could be crowns to two cracked molars is the cause. Try heaps of METHYL COBALAMIN B12. And stop alcohol.
Good luck.

As far as good shoes, I found Hoka work the best for me. I get them wider and 1/2 size bigger than I need. Gives my foot room to swell and is not as painful with the oversensitivity I have

Hello I am D. Nolan. I started having the sensation of puffy feet underneath but there was actually no swelling. A couple months later I was stricken with excruciating pain in both feet. It was diagnosed as peripheral neuropathy acquired from chemotherapy drugs for multiple myeloma. The pain has felt like thousands of bee’s stinging all the way around the lower area of the feet and then it changes to feeling like fire burning. I also get 6 to 8 pins and needles at the same time anywhere inside the feet. I will also have what feels like lightning striking inside the feet. I will occasionally get what feels like someone taking a razor blade circling and cutting around the little and big toes. The pain was so great for 4 months I could barely walk. My feet were so sensitive I could not lay them down on the sheets. My wife could not sleep in the same bed because we were both afraid she would bump against me. I literally had to pull my knees up to my chest and holding them with my are arms for 15 minutes or as long as I could hold them. I would then dangle my legs off the side of the bed and try to sleep for 15 to 20 minutes. I guess I wasn’t getting proper blood flow with my legs dangling because the pain would increase or I would get tired. Therefore, I would have to start over by bring my knees back up to my chest. Most of the time I couldn’t sleep but if I did get any sleep it was on 2 to 3 hours each night. This went on 24/7 for 4 months. Only with the help of GOD was I able to get through it. My Oncologist eliminated the chemo agent that caused the neuropathy. However, I was almost in remission with the myeloma so because my numbers were so good, the chemo was totally suspended to allow my immune system to help out the neuropathy. Physical Therapy, Water Therapy, and Medication have helped to where my pain level doesn’t get higher than 4 or 5. I have gone from not walking to walking but don’t my normal gate or full balance. There is some risk with all chemo drugs causing neuropathy. I just have to hope and pray when I resume it doesn’t aggravate or worsen my current condition. I definitely want to have Scrambler therapy. I haven’t been able to get a clear answer from my insurance except that if it is a Code 0278T it will be denied. As a result, I may have to pay out of pocket and incur airline and hotel expenses. Does anyone know if Mayo will allow a payment plan? Secondly, should all of your chemotherapy be completed before you are eligible to have the Scrambler Therapy? Thanks for your reply?
Blessings and best wishes to all, Stay Strong!

Welcome D.Nolan @mm23, I think you might find the following discussion helpful in connecting with others with similar symptoms to learn what they have shared helps.
-- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/
There are a few discussions on the scrambler therapy also if you want to scan through them - https://connect.mayoclinic.org/search/discussions/?search=scrambler%20therapy.

You might want to give the Billing and Insurance Office a call for any questions you might have. Here is a page with contact information - https://www.mayoclinic.org/billing-insurance/contact-us.