Looking to connect with people who have non-diabetic neuropathy

Hi Tina,

Twice Survivor of cancer myself - female organs, though. Once at age 14 and the following and final before a full radical hysterectomy removed all organs in the reproductive vicinity in 2020.

Yes - the Abbott Proclaim XR DBS (Deep Brain Stimulator) helps me... have you done TENS Units, but the supercharged high-grade type they have at PT places? It's like having one implanted into your body at all times.

Hmm... what else? You're not interested in different pills, don't blame you there! I got off of the Gaba drugs and a few others myself... Are you open to using natural supplements? If so I have a few ideas for you - nothing like new-age or woo-woo or whatever, just a few things that are known to help.

And : No matter how bad it gets, Move through the Pain! Othrewise end up with atrophined muscles, bed-bound, within a few years. My former PCP told me that when my health issues really became intense - I believe I was or would soon be 35 or 36, by that time, and she definitely sent the message loud and clear when she explained that she knows women who do NOT get out of bed by aged 40 because they simply cannot - I was bedbound and have days when I am bedbound, and I have days where I have to crawl or I get stuck sitting outside and I'm a Fall-Risk, but other days I can Walk.

I know a lot of the folks on here are far older. I am turning 40 next month - can't feel anything but the trunk of my body and parts of my shoulder and patches of my face - ALL ELSE is NUMB and it's brutal --- I"m honestly jealous of those of you who ended up in these rooms AFTER age had its way with you. I just want to be able to walk, to not have tot hold my bladder...

@lambchoptina2, idk how old you are or how recently you've been diagnosed but I'm here and I have some options that are hoenopathic and naturopatic, or rely on things like silicone, electrodes, magnets, leads, battery packs... and can be external TENS Units, if you want, or internal DBS/SCS surgical procedures if you want...

Last thing: trigger point injections, epidurals, botox for migraine, and some 'pain' meds - esp what my pain doctor considers to be 'herbal supplements' - oh and I've also learned some things like: what to avoid.

My SFPN was pretty manageable until I was the survivor and the not-at-fault party to a car accident where a younger and aloof kiddo in his early 20's rear-ended me at a stoplight... this accident happened to just shatter me. But before that, I was doing Aquatic PT and I was also, during Covid and prior to the avcciddnt in Nov of 2020, doing ballet barre by myself at least four days per week.

Hope some/any of this is helpful. If not, please feel free to disregard entirely. thx, and nice to meet you, Tina. I'm Nicole Marie

I got the diagnosis of idiopathic neuropathy in both lower legs and feet after exhaustive tests and a thorough workup at Southwestern Medical School. That was 15 years ago and thankfully it has progressed only slowly. At night it increases severely when I lay flat. My feet eventually feel like burning ice. A light pair of socks helps if light bedcovers don’t suffice. It goes away about 20 minutes after the sock treatment. Then I MUST take the socks off or I wake up feeling unbearably hot. Welcome to old age!

I got the diagnosis of idiopathic neuropathy in both lower legs and feet after exhaustive tests and a thorough workup at Southwestern Medical School. That was 15 years ago and thankfully it has progressed only slowly. At night it increases severely when I lay flat. My feet eventually feel like burning ice. A light pair of socks helps if light bedcovers don’t suffice. It goes away about 20 minutes after the sock treatment. Then I MUST take the socks off or I wake up feeling unbearably hot. Welcome to old age!

Hi @misu,

You are right not to accept your diagnosis until you’ve had a complete work up from a competent neurologist. You should see a neuro-muscular specialist if possible, and get all the standard bloodwork, plus EMG, and MRI. Idiopathic is not a diagnosis, it’s a failure to find a diagnosis. That happens, but make them do the work before they give you that label.

Good luck.

As much as I agree, I live in Canada where we have "free" health care, and sometimes we only get what we pay for. I requested tests and was ignored, as my family doc agrees with the "diagnosis." I'm on wait lists to get a new doctor, but that can take years (if it happens at all). I need an American husband! 😉

I got the diagnosis of idiopathic neuropathy in both lower legs and feet after exhaustive tests and a thorough workup at Southwestern Medical School. That was 15 years ago and thankfully it has progressed only slowly. At night it increases severely when I lay flat. My feet eventually feel like burning ice. A light pair of socks helps if light bedcovers don’t suffice. It goes away about 20 minutes after the sock treatment. Then I MUST take the socks off or I wake up feeling unbearably hot. Welcome to old age!

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

Please post for all. Every little bit might help someone. I’m a retired nurse. I was taking Tramadol for several years for my back. When the feet started driving me crazy, with tingling and burning, my pain dr. put me on Gabapentin. All I wanted to do was sleep. He said that would go away. And it did.
So for the most part it helped me for several years. I know the next drug will be Lyrica and I don’t want that.
I have progressed from Tramadol to Norco and I won’t go any further. I’m 78 and maybe coming to my end of life
But my father made it to 94. In a veteran’s home with very little enjoyment.
I’m not increasing my drugs from now on. 🫰🏻Just staying with my meds & vitamins. Voltaren on my feet at night.
I hope this has helped someone.
Surgerymardy44
05/2023

Everyone is different but maybe this will help. I sleep in the basement bedroom where it’s cool. I have all the pain located where yours are, I put a fan blowing on me and place a pillow between my knees and at my feet. I don’t move my feet until I go from one side to the other. I wake up and my feet feel OK. I also take MSContin 15mg at night. I am 70 and it’s horrible to have your well deserved retirement screwed up over this ailment that has little success in helping with pain. Good luck !

Please post for all. Every little bit might help someone. I’m a retired nurse. I was taking Tramadol for several years for my back. When the feet started driving me crazy, with tingling and burning, my pain dr. put me on Gabapentin. All I wanted to do was sleep. He said that would go away. And it did.
So for the most part it helped me for several years. I know the next drug will be Lyrica and I don’t want that.
I have progressed from Tramadol to Norco and I won’t go any further. I’m 78 and maybe coming to my end of life
But my father made it to 94. In a veteran’s home with very little enjoyment.
I’m not increasing my drugs from now on. 🫰🏻Just staying with my meds & vitamins. Voltaren on my feet at night.
I hope this has helped someone.
Surgerymardy44
05/2023