Looking to connect with people who have non-diabetic neuropathy

So what's the sock brand name?

I started experiencing pheriferial neuropathy in 2018 after my second liver transplant in 2017. I went to see a Neurologist at my transplant center hospital. After about 15 different blood test and a test on my feet with electrical stimulation to measure my feet's nerve reactions. I talked to this doctor about medicine for this pain like Lyrica at that time. So I started taking it daily. A couple years ago this doctor left my hospital so I found another one. He seems better at what he does. But still taking Lyrica (now it's generic pregabalin), 100mg twice daily. Plus I went to see a doctor about pain they suggested THC which is in marijuana. My state has medical marijuana so I got a card and started using it latee in the evenings. This seems to have help with taking Pregabalin. However, you need to control your use of anything you take into your body. Even certain vitamins, minerals and supplements when taken at high levels can cause toxicity to your body. And because of bring a transplant patient, I still have to take immune surpressants (Prograf/Tacrolimus genetic) that my first Neurologist said could have caused my neuropathy but I my Transplant Doctor did reduce my immune surpressants daily. My second Neurologist doctor and his PA did perform further tests. One being a vitamin level test for B6 and told me to reduce my B supplements I take. I had started a B Complex vitamin a few years back with all B vitamins, espically B12 which if your body has low levels this cause pian and I take alpha lipoic acid supplement that was suggested. I also tried meditation too.

My pain management doctor prescribed tramadol for chronic back pain. I took one of those things and tossed them in the trash! WAY stronger than anything I want to take! Made post surgery oxy seem like candy!

I totally agree with everything you say. Supplements scare me as much as prescription drugs. The interactions they have can be harmful. Just because they’re OTC doesn’t mean they are safe with other things. My doctor wants me to stick with gabapentin as long as I can since he considers pregabalin the last line of defense. I am going for blood work next week and hoping results will show an easier fix than another prescription is an option…maybe just a nice B12 deficiency🤷‍♀️

I have CIPN (chemo induced peripheral neuropathy) which started in 2010 and was made so much worse when a doctor put me on ciprofloxacin for a UTI (which I will never understand as there is a warning on the prescription that it must not be given to patients with neuropathy). The only thing I have found that saves my sanity is taking long walks out in nature, someplace quiet away from people and pets. All the "remedies" seem to come with more debilitating side effects. I always take a nice sturdy walking stick and tuck a small pepper spray in my pocket, and head out to the open fields and woodland paths. I can't tell you how much that helps my whole outlook! So I sincerely recommend it to all who start to feel hopeless, it's worth a try and doesn't cost a thing!

Hello @sunnyhunt, Quiet and long walks outdoors with nature is definitely a good way to gather your thoughts and feel better. Best of all like you say, it doesn't cost a thing! I'm not sure if you are aware of the other discussions related to chemo induced neuropathy and what helps but I thought I would share a link with you. This shows search results for "chemo neuropathy what helps" - https://connect.mayoclinic.org/search/discussions/?search=chemo%20neuropathy%20what%20helps

Hope you have a great day along with all my neuropathy friends!

You can Google fda approved medication for peripheral neuropathy. It gives you various web sites to read.

Hi All,

I’ve been previously diagnosed with severe neuropathy in hands, forearms, shoulders, abdomen, feet, legs and thighs, as well as my private parts, for many years. Symptoms arose during my late teens and progressed into early twenties, for no apparent reason, having taken no previous meds, no known (at the time) chemical or toxic exposures, no tobacco, no drugs, no alcohol, no diabetes. A real mystery, which began as painfully, sore feet, about a year before military discharge. Ever hear of a U.S. Fleet Marine (US Navy Field Medic stationed with US Marine Corps) who didn’t complain of painful feet? Pain for the most part eventually disappeared, leaving near total numbness in its’ place in all of the above mentioned body parts.
Years later, I discover that my neurological problems could only have started because of my being stationed at the US Marine Corp base during 1967 in Camp Lejeune, NC, attributable to water contaminated with Benzene, Trichlorethelene and other solvents in amounts over 400 times thought acceptable by FDA.
The Veterans Administration has eventually acknowledged service connection, thanks to the recent passage of the PACT Act, but aside from getting the answer to a lifelong mystery, I’m almost sorry that although the VA has responded favorably in accepting service connection, along with their assurance of continuing care, I feel that after fifty years, at this point in my life, recalling all of the sports and social limitations I’ve lived through, I might have been better off not knowing the origins. Today, I really do not suffer from much pain, just the severe numbness. I’ve always been under the care of neurologists, but at this point, I only take Gabapentin; 300mg/day and Alpha-Lipoic Acid; 600mg/day. My biggest problems are that when walking, It feels as though I have thick, spongy carpeting under my feet, unsteady, constantly tripping over my own feet & falling. Also, I’m never without my thermometer when showering, since I’m occasionally burned by fluctuations in water temperature when showering.

Hi @kenhassen, Welcome to Connect. I only have the numbness in my legs and feet but not to extent that you do. I too have been dealing with it since my 40s but only got a diagnosis in my 70s since I had always been told it's probably nerve damage and there is nothing that can be done about the numbness. I was bummed out when I finally sought a diagnosis and it turned out to be idiopathic small fiber peripheral neuropathy and again I was told they didn't have any treatments to help with the numbness which was what brought me to Connect. I wanted to learn what others have shared. I'm happy you have found Connect as I know you are not alone with your experience.

It sounds like you don't have any pain or the gabapentin is controlling the pain. I was given gabapentin by my primary care doc before being diagnosed but stopped taking it after a couple of weeks because it wasn't helping the numbness at all. I talked with my PCP who met with her Mayo team and after meeting with them and answering a few questions about pain, they confirmed it won't do anything for numbness.

There are a couple of sites you might find helpful for learning more about neuropathy if you haven't already seen them.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

I've tried many different shoes to try and help with that spongy feeling when walking. The best I've tried are the shoes with zero drop soles which are similar to walking barefoot but your foot is protected by thin flat rubber soles. There are a lot of different brands but the ones I tried were Xero shoes. I switch between the zero drop soles and more normal shoes that are comfortable if I know I have to walk very far.

Have you used any walking aids like trekking or hiking poles for more stability?

Hi John,
You’re correct about the Gabapentin. I’ve continued on with Gabapentin for the six months suggested by my neurologist, but will eventually drop it, since pain isn’t really an issue with me. As for the Alpha Lipoic Acid; I’m really unsure; if it is a help, but stay on it since it may possibly assist in the progression of further numbness? As for shoes, flats seem better for short distances. For anything more than a few blocks, I use Sketchers, since the increased distance from the sole of my foot to the surface of the pavement seems to partially reduce the sensation of complete numbness. The downside is the potential for imbalance and unsteadiness on my feet, which is why I use 2 canes. I’ve tried trekking sticks, and sometimes use them. I’ve accumulated a real collection of walking aids, but my overall favorite are left & right tekescoping canes with built in palm rests, which more evenly distributes hand stability, because of hand numbness.
-Ken Hassen, 7/10/24.