Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

easydoesit60 | @easydoesit60 | Jul 12, 2025

In reply to @marinelastef "Please keep us updated if finding a relief !! Good Look to you !!" + (show)

This is my first post. I have non diabetic neuropathy. But, I have yet to have my EMG and on my first appointment with neurology I was given Oxcarbazepine--apparently a anti seizure medication. After picking up the prescription and 20 minutes after taking it, the horrible, continuous nerve pain that I have had 24-7 was gone. I am to take Oxcarbazepine 150 mg twice a day. I still feel throbbing but it doesn't hurt. I can wear my Skechers for the first time in a month instead of my clunky crocs. The excruciating shooting toe pain is gone for now. I am cautiously optimistic. I had too many side effects after taking gabapentin, so I was given Cymbalta. But, I am already taking the depression medication Mirtazapine at night and do not want to take another prescription if not absolutely necessary. I was given the antibiotic Linezolid for a mycobacterium pulmonary lung disease and I took that oral medication for 4 months in addition to 3 other antibiotics for the same amount of time. Within 3 minutes after advising neurology APRN I had taken the Linezolid she told me that it was a side effect of Linezolid. My infectious disease doctor never mentioned neuropathy as a side effect. Also, I had a vitamin B-12 deficiency which cleared up after taking supplement for it. So, did the vitamin B-12 cause neuropathy or was it the Linezolid? Maybe both? I am 69 yrs old and still working as a house manager which includes strenuous house cleaning so without the Oxcarbazepine it was hell due to being on my feet for 8 hours a day. Another side effect of neuropathy was pain in my right total knee replacement. I never had ANY pain from TKR in the 3 years after surgery. I think I was having the pain because my gait has been off. I too had cold feet and had to wear my "winter" socks when it was 95 degrees outside. I had no idea what neuropathy was until my PCP suggested it during my yearly fitness exam over a month ago. I have a new-found sympathy for those fellow sufferers of neuropathy and it breaks my heart that I may have this disease for the rest of my life and the same for the folks who comment on this forum. May thoughts are with you all.

1kay2 | @1kay2 | Jul 12, 2025

In reply to @arcuri24 "The new cream is an Rx form of capsaisin--which is now sold OTC. This new treatment..." + (show)

I had been able to get my rub A535 with capsaicin and then they stopped making it so I got some capsaicin pills but it did not work the same so I stopped the pills.

arcuri24 | @arcuri24 | Jul 12, 2025

I was unaware that capsaicin came in pill form

rrr1 | @rrr1 | Aug 14, 2025

In reply to @sungaltoo "I was athletic my whole life and figured the nerve pain was from misuse and pounding..." + (show)

@sungaltoo

I was athletic my whole life and figured the nerve pain was from misuse and pounding on the ground and my hands were overuse too, mainly through typing 80wpm on a manual typewriter. The throbbing in my thumbs became so bad in winter and summer I had to wear gloves and avoid touching things with my thumbs. I was diagnosed with Raynaud’s, a type of small blood vessel disease.
In my 50s I started falling more often and was diagnosed with neuropathy and seizures, which I had since childhood. The pain was so unbearable in my thumbs that only Gabapentin allowed me to use them. I’m still on it over a decade later. I’m still losing balance and the restless legs, and stabbing and burning while putting my legs up or sleeping is bad, so I’m usually walking or sitting moving them all the time and wake up 2-4 times a night.
I was also diagnosed with Myastenia Gravis in my 60s, an autoimmune nerve/muscle synapse connection disorder.
I wear socks all the time and keep my feet moisturized to prevent any dry or cracked skin.
I take a CVS generic Centrum 50+ Advanced multivitamin, which I have found I feel worse if I don’t stay on it. I also take a host of other supplements including one for my eyes, equivalent of AREDS but with Omega 3s EPA and DHA.
I have found relief in my legs most recently, after a lot of research to find what I’m missing from my diet, yet avoid overdosing, and have started taking these supplements:
1. bromelain/quercetin
2. R-alpha lipoic acid, more assimilated than regular alpha lipoic acid
3. Terry Naturally Healthy Feet and Nerves with more assimilated versions of the B vitamins, Boswellia, Benfotiamine
4. Vit C with rose hips
I actually can’t tell which of these last 4 has just about eliminated my restless legs and sleeptime stabbing/burning, because I was so desperate I just started taking them all at the same time. But after 2 weeks I started alternating tablets over nights and now I skip some nights without some to save money.
I’m just about convinced some of these chronic health problems are nutritional deficiencies just like rickets and scurvy was until they figured it out. I get the majority of my supplements on sale at CVS and amazon. I found out the hard way I can only cut down Gabapentin and not eliminate it yet. I hope everyone finds their solutions

Jump to this post

I have peripheral neurophy in legs and feet and bad lower back also balance and walking issues I use a rollator to get around. using regular lipoic acid and now for two weeks R-lipoci acid 1200 mg a day and now starting to have restless legs at night and some during the day I am going to try going to 600 mg per day and see what happens What dosage do you take

sungaltoo | @sungaltoo | Aug 14, 2025

In reply to @rrr1 "I have peripheral neurophy in legs and feet and bad lower back also balance and walking..." + (show)

There’s 300mg in the supplement I take, Terry Naturally’s Healthy Feet and Nerves, along with its readily absorbable B vitamins and herbs. I was taking that for a week when my symptoms stopped.
I had been taking a multivitamin and gabapentin for years but still had symptoms. I added the R-ALA 600mg every other day when I started taking the Terry supplement because I read it took 600mg a day for symptoms to stop. The R-ALA is the natural form of ALA. It’s been months now and my symptoms still haven’t come back.
I do take other supplements too and protein and collagen powder shakes. My overall health is better except for my bone, blood and other neurological issues. I spend a lot on supplements in my opinion compared to what I used to do but it’s been worth it for me

rrr1 | @rrr1 | Aug 14, 2025

In reply to @sungaltoo "There’s 300mg in the supplement I take, Terry Naturally’s Healthy Feet and Nerves, along with its..." + (show)

I take vitamin B as well can not take a lot of others due to other medication on I am on
going to look into the Terry one and reducing the R-lipoci acid to 600 will see what happens Thanks

debbieod | @debbieod | Aug 15, 2025

In reply to @rrr1 "I have peripheral neurophy in legs and feet and bad lower back also balance and walking..." + (show)

I take 1200 a day. IMHO I don't think that ala would be associated with RLS. Thats an interesting thoughy
Have you tried either using magnesium glycinate in the evening or a magnesium cream. I do both with helpful results

rolyhu | @rolyhu | Jan 31 9:41pm

I was initially diagnosed with idiopathic peripheral neuropathy about 20 years ago, but since I became pre-diabetic, all of a sudden, my diagnosis changed to diabetic neuropathy. I have never had A1C greater than 6.3 for only 4 times in 13 years. I have much difficulty finding any meds or combination of meds to be very effective. I think I have "augmentation" which terrifies me.