Looking to connect with people who have non-diabetic neuropathy

I have had breast cancer twice but this last time I had 6 months of very sting chemotherapy. After the chemo I started having neuropathy in both feet. At night especially awful. I have tried everything and now I rub my feet every night with frankincense and myrrh cream. It does help to some extent at night and if it doesn’t do more than make my feet incredibly soft at least it does something. I have not been successful with conventional medication and honestly tired of trying this pill and that. Any suggestions I would appreciate

Thanks for the information as I will look into it. I was depressed when my general practitioner sent me to a cancer doctor that said I had MGUS it’s a bone marrow problem that can cause problems of its own and it could turn into Multiple Myeloma. I get blood work every six months to see how my numbers are. My older brother died of Multiple Myeloma at the age of 56 he was 48 when his doctor found the cancer. I guess at one time or another we are all faced with health problems as we get older.

Welcome Tina @lambchoptina2, Sorry to hear you haven't found a treatment that helps much with the neuropathy. You are not alone. A lot of folks share the same frustration. I'm wondering if you might find some help in one of these discussions:

--- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
--- Foot neuropathy: What gives you relief?: https://connect.mayoclinic.org/discussion/foot-neuropathy/
--- Supplements - What helps nerve pain and/or neuropathy?: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
--- Breast Cancer and Neuropathy: https://connect.mayoclinic.org/discussion/just-to-say-hello/

Have you done any research on supplements to see if they might help?

Everybody in this thread sounds like they're not accepting their diagnosis, nor giving in, so it sounds like I found my people. I was diagnosed with idiopathic polyneuropathy after what I considered a perfunctory examination. Nothing was offered by way of treatment. I do not have a great deal of pain, but was told it's coming. I always thought it was a compressed nerve, and potentially fixable, maybe with surgery or splinting. It began 5 years ago with a small patch of odd sensation on the ball of my left foot, which now is a low-grade numbness that is above my knee. If I stretch my toes it feels like tiny sparks are shooting out of them. I'm not desperate for treatment because the pain is mild, and the condition seems to be blocking me from feeling the worst pain from my severely arthritic left knee. I'm not even aware of the nerve issue found in my right leg. I asked for nerve conduction testing and got no response. Does anybody else feel like their neuropathy diagnosis might have been in error? I was just refused knee replacement surgery, possibly due to the neuropathy -- the surgeon said TKR is for pain, not function. I don't know what to make of that.

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.

I have neuropathy on the top of my head and some trigeminal neuralgia I am now on gabapentin max dose and Pamelor very dizzy and tired but still have pain just keep trying more meds. And keep moving forward. Try as many doctors you think can help. It takes a long time to find someone who will help you.

Thank you for your insight! Pat

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 was diagnosed with idiopathic small fiber neuropathy 7 years ago. I have tried every med out there. I have had 2 spinal cord stimulator trials to date. Multiple injections of every type. I spent a week at Mayo in Rochester 2 years ago and they confirmed the diagnosis. Nothing has helped. Nothing. I retired from the pharmaceutical industry and I keep up with the paltry amount of neuropathy research. Nothing of any significance is on the horizon. Oh they do clinical trials, but they never lead to anything that addresses the problem. I have resigned myself that I will be in pain until the day I die. I don’t plan on going to any more physicians because it’s a waste of time and money. It is what it is.