Neuropathy of the feet: Any advice on how to eliminate the numbness?

65 yo was age at dx.

Hello Mark @mfullbri, I want to thank you for the private message and the kind words. I also wanted to give you a belated welcome to Connect and apologize for not seeing this first post of yours. Gout in the big toe is definitely the pits. My first flare up of polymyalgia rheumatica (PMR) back in 2007 included gout in my right foot and toe and it was debilitating so I definitely know how difficult dealing with it is. I had been dealing with neuropathy for a long time but fortunate for me it was only some numbness in the feet. I didn't bother to get a diagnosis because all of my primary care docs had said even if it is neuropathy there are no meds that will help with the numbness. I finally decided in 2016 to see a neurologist at Rochester Mayo and was diagnosed with idiopathic small fiber peripheral neuropathy and was pretty disappointed coming away from that appointment with the same prognosis as all of my PCPs over the years had given me. Actually that was the beginning of my searching and how I found Connect. Connect is a great resource to learn from other members experiences with different treatments that have helped them.

I'm very happy to hear that you are motivated and learning as much as you can about your condition and treatments that might provide some relief. Is your neuropathy just affecting your feet currently?

Hi John
It seems like my feet are constantly changing in terms of how they feel. Started as numbness, electrical humming in my right foot then to the left foot as well. Late November both feet started hurting when walking. All very disappointing given how active I like to be on a given day. So now, top and bottom of both feet with occasional sensation in ankle. On gabapentin (100 mg 3x per day). Tried laser therapy and ECST with a local (Minneapolis, MN) chiropractor. I was skeptical of the treatment but decided to go forward after talking with some friends in the medical field. In the end, after 9 weeks both feet felt a bit worse so am taking a break from that treatment. Looking into the Protocol and may go forward with a 3- or 6-month purchase to see if any positive impact. The Mayo experience was helpful to obtain the idiopathic SFN diagnosis. However, plan to see a local Neurologist to have someone in the Twin Cities. The frustrating piece is how little tools there are in the established medical community to treat or manage SFN. Agree, Mayo Connect has been a valuable resource to learn more about the disease and how people are working to manage their own condition. Again, appreciate your comments and response.
Best
Mark

Not sure if you have seen this list of Complementary and Alternative Treatments from the Foundation for Peripheral Neuropathy so thought I would share it here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Thank you, John. Very good summary by the foundation on complementary and alternative treatments. Thanks again - really speeds up the learning process!
Mark

I keep a printout of the FPN’s Complementary and Alternative Treatments in the 3-ring binder, in which I keep copies of everything pertaining to my PN. It’s a fascinating list. However, I find it revealing that the majority of therapies, tips, and tricks for dealing with one’s PN have to do with pain and far fewer with numbness. I believe that tells someone like me, who has numbness but has been spared pain, how challenging it is to find a pill, ointment, or other OTC application that will help relieve numbness. I traveled the snake oil road and learned my lesson. 🙂

I have small fiber SFN, some inherited version. Started alpha lipoic acid and within 2 weeks started getting back feeling in my feet. After 6 months I have regained most of my feeling. I started at 300mg bid then after a couple of months went to 600 mg because it had made an improvement/decrease in my back pain. After 6 months my feet “feel” better and my back pain (nerve pain) is very well controlled. No more Tylenol and advil (for back).

I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with unmanaged/uncontrollably diabetes II and painful neuropathy.

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (gabapentin, Juniva, Metformin, Duloxetine, etc.. I completely regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions, you DO NOT want the neuropathy (nerve damage) to quickly grow and affect your entire feet, calves, thighs, and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, daily activities, etc..

Sadly, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" ! The only solution provided is to amputate feet, legs, and hands. I could not live with myself with such situation as I will continue to suffer and convince mind it is part of the remaining part and style of my life.

I do not mean to frighten anyone but only explain my experiences.

My helpful solution was used icy hot “cream” as pain increases. Plus, I adopted a 4 year German Shepard to help encourage walking at least 3-4 times a week.

My advice is to eat healthy, exercise, and most definitely "Save your Money!

My prayers are with you …

Hi @madje
Thank you for your response and insights. Can you share which alpha lipoic acid product you are using to treat your SFN?
Again, very helpful and thank you for sharing your experience.

@ray666 - Ray, on previous posts for your numbness, if I recall correctly, you were taking the 525, how did you make out? Being that we do share common symptoms, I guess I was on the sidelines waiting to see if you and others might have hopefully found some success. I constantly keep in mind that our symptoms could be the same, yet the cause be totally different. Ed