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

For the last 9 years, I’ve searched for an electric mat for our ceramic tile shower floor as it’s bloody cold in the winter. My neuropathy symptoms started in July 2019 with numbness, burning sensations, and stabbing pains. The numbness has progressed but with Gabapentin, the burning and stabbing pains are minimal. With temps in the teens last week, I realized that the shower floor no longer felt cold. 😸 The numbness has some benefit. 🙀

Hello, Ed (@njed). It wasn't 525 but EB-N5, and I'm still on it: two capsules each day. After I got the results of some blood work in October that showed my B6 to be High (114), my neurologist's NP suggested I cut back to one capsule each day, then get fresh blood work––which I got just two weeks ago; my B6 level had come down to 72. The NP cleared me to resume two capsules. Her boss, the head neurologist at the local hospital, has me going in on 1/26 for a new EMG, to be followed by a roundtable discussion (my partner will join us) about all things related to my PN, including the EB-N5. Enough about me. How is your wife doing, Ed? And how about you? Good days? So-so days? ––Ray (@ray666)

@ray666 Ray, all doing very well on our end. So, why was the EB-N5 suggested by your neurologist? Having similar symptoms and the fact that you are still taking it, has it helped you in any way or is the jury still out? I know that you've been taking it for quite some time. Ed

Hi Michhino
Reading your post, you are voicing my sentiment to the letter.
Nothing works.!!!
I do use Vicks and it tones down the intensity of the pain, numbness, and the rest of the feelings, also Mineral Ice.
Cheap at Walmart.
I work out at the gym 4 days a week for an hour and also do it from time to time physical therapy 3 days a week.
Nothing helps as you said and resigned to the fact that I have to live like that and do the best of it.
Looking around, I see others with much more intense and difficult issues than mine. So "I Aint Complaining"
I am 85 and so far I am still here. 🙂

I'm dealing with neuropathy in my feet only recently - about the last year. I live in WI where the seasons change and I swear I can feel the cold weather and temperature changing in my feet. (Yes, my husband looks at me funny when I say that.) Our current frigid temps are a newer challenge; I recently realized having the heat in the car directed at my feet (at all) results in them "burning!" Then it'll take 4-12 hours for them to recover. Currently, I have six pairs of shoes lined up and I switch them around very frequently throughout the day. Some have rounded roomier toes. My hiking boots have thick soles so I don't feel the cold from the floors or ground outside (or heat/cold.) Sometimes I wear my big warmer men's slippers because everything else feels too tight and causes tingling which ramps up to pain.... For numbness, stabbing pain, etc. I also change socks in the day. Sometimes the texture of one just starts feeling irritating and that increases into shoes having to be off.... It just goes on and on. I have a prescription cream that includes ketamine. That is the current best medication for me. I might top that with Voltarin (over the counter lotion) when cream one isn't doing the trick. I feel like I'm always preparing for my feet to get worse. I often have no symptoms too. And I wonder if spring will bring improvement as temperatures warm. Staying away from coffee, and carbs more and more, exercise ... Trying to keep the temperature and comfort of my feet steady always. It's definitely a mystery still to be solved.

Re: managing the condition and little medical treatment "cures," I have 5 siblings. All of us seem to have varying forms of something linked. Two diabetic, me idiopathic, one had gout and has a terrible time tolerating statin drugs, one was in the ER and CCU repeatedly before cancer claimed him. (I'll revise that as God.) One of us has a persistent immune disorder that effects her eyes too, but no neuropathy symptoms. When I have very terrible instances of neuropathy pain, my leg breaks out with eczema, but the opposite leg than the one that's painful. One sibling gets deep muscle pains, wonders if it's his statin drug. And two of us have challenges with their blood pressure shooting alarmingly high - or low. We're all thinking there's a genetic link to all of this to be uncovered. And that will take time to discover, maybe a generation or more.
Mark and all, what is meant by "SFN?"

Yep, me. I had the same experience. Gabapetin in a cream, which the pharmacist then suggested changing to something stronger. She said they use all kinds of things that are stronger than Gabapetin. I'm on prescription cream #2 and wonder when/if I'll need a #3.

Hi @pegc159 - SFN is small fiber neuropathy.

Small fiber neuropathy is the clinical term for the nerve disease affecting my feet. My diagnosis came from the neurological department at the Mayo Clinic.

Good morning, Ed (@njed) Your saying “all doing well on our end” sounds like the best possible news. I’m happy to hear that. As for your EB-N5 question, this is the perfect time for me to double-check the dates and reasons since I’m about to meet with a new neurologist, and he’s bound to ask me about my history with EB-N5. I was prescribed EB-N5 by Dr. B. (I’ll call him Dr. B.) in 2023 and took my first capsules (two a day) on July 3. That means I’ve been taking EB-N5 now for six-and-a-half months. At the time Dr. B. suggested EB-N5, I knew nothing about the possibility of B6 toxicity. It was only after I posted on Connect that folks alerted me to the dangers of toxicity. I called and spoke to Dr. B., and he explained that there are two strains of B6: pyridoxine hydrochloride, which can lead to toxicity, and pyridoxal-5-phosphate (P5P), which cannot (or at least should not). EB-N5 contains only P5P, so I shouldn’t be alarmed. More recently, Dr. W.’s nurse (my new neurologist, I’ll call Dr. W.) said this to me. It’s Dr. W. who’ll be giving me a new EMG on January 26, after which I’ll be reviewing with him everything about my PN, including my taking EB-N5. As far as symptoms go (Has EB-N5 helped, hindered, or there’s not much to report?), I’m not sure what to say. My balance is still wonky, wonkier at times than others. I’ve not fallen (thanks to my Ph.D. in proprioception 🙂 ). I still have no pain. I’ll talk with Dr. W. with as open a mind as possible. Ed, I apologize for such a lengthy reply to your question, but it’s been good for me to review all this before meeting Dr. W. Again, the best news possible is hearing that you and your wife are doing well! –Ray