Living with Neuropathy - Welcome to the group

Hi Mark,

I also have neuropathy in my feet and ankles. I've tried Gabapentin but it is not affective for me. I also have severe Restless Legs and Myoclonus and wonder if you have this also? I`d appreciate any information anyone has about treatment of Restless Legs at the Mayo Clinic and the cost if possible.

Thanks,
ShoeBag Lady

These are the things my husband is taking
B COMPLEX CAPS
LYRICA 100 mg
Feet massage with BLACK SEED OIL
Wears low cut diabetic socks all the time
And when he has a flair up before it gets really bad he applies a 4 % LIDOCAINE cream or spray
Hope something helps

Hello @shoebaglady, Welcome to Connect. Here is some information from Mayo Clinic on the diagnosis and treatment of Restless Leg Syndrome - https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/diagnosis-treatment/drc-20377174.

There is another discussion that mentions restless legs and myoclonus that might be helpful to scan through:
-- 1 year later: involuntary limb movements, toe twitching, VERY jittery:
https://connect.mayoclinic.org/discussion/1-year-later-involuntary-limb-movements-toe-twitching-very-jittery/

Welcome Mark @markherbert70, Sorry to hear your treatment is not helping much with your neuropathy symptoms. Here are a couple of discussions on red light therapy but there are many if you want to search "red light therapy" in the search box at the top of any Connect page.

-- Anyone tried using red light therapy?:
https://connect.mayoclinic.org/discussion/anyone-tried-using-red-light-therapy/
-- Medical grade red light therapy:
https://connect.mayoclinic.org/discussion/medical-grade-red-light-therapy/
Have you seen the Foundation for Peripheral Neuropathy website? They have a lot of great information on the different treatments, as well as some tips for vetting the different neuropathy cures being offered on the market.
-- Treatments: https://www.foundationforpn.org/treatments/
-- Vetting Information on Peripheral Neuropathy: https://www.foundationforpn.org/wp-content/uploads/2025/01/VettingPNinfo.pdf

I have also been living with the effects of neuropathy in my hands, legs and feet for several years now. I was admitted into a neuro and brain program in Mesa, CA, and they connect with my neurologist at Mayo. I also decided Gabapentin was doing me no favors health wise and I stopped taking the medication. I do still take Cymbalta. My OT and PT people at the neuro and brain clinic have started a process called scrapping on my hands, feet and legs to help stimulate my nerves. This therapy has primarily been used for MS patients but seems to be working for neuropathy as well.

There are several You Tube videos on the process. It is actually quite simple. You need a butter knife and lotion, like Aquaphor. Apply a thick amount of lotion and scrap your hands gently but firmly with the DULL side of the knife. I find for me every other day seems to be bringing my hands back to life. Just starting on my feet and legs, and hoping for great results!

The less drugs and more exercise with yoga bands or standing at the kitchen counter doing feet exercises helps as well. I also have gone to wearing Hike shoes but you need the extra insert they sell for any relief.

My experiences and I truly understand the path you are on. I hope maybe one little thing helps!

My name is Sheila. I am 78 years old and have really bad PN in my thighs. I had breast cancer in 2017 and have neuropathy in my feet from Chemo. I have had a shot in my back and it made things worse. I have tried everything for the pain and no luck. Does anyone use CBD pills? I might try it. Thank you.

Hi @bestgrammy, I did a search of Connect for "CBD for neuropathy" and thought you might like to scan through the results to learn what other members have shared. There are quite a few different discussions and many comments - https://connect.mayoclinic.org/search/?search=CBD+for+neuropathy.

My name is Valerie. I’ll try to keep my story short even though it is a long one. In 2021 the right side of my face became numb . After taking a round of steroids and a MRI they found nothing . Several months later I developed pain on the left side of my face and soon after the left side of my face became numb . I soon was diagnosed with trigeminal nueralgia on the left side.the pain became quite severe as it does with trigeminal nueralgia . Doctor recommended cyber knife for pain. Going forward I saw doctor and had cyber knife done several months later . Six months after the numbness became very severe on left side . I look like a stroke patient, with slurring of words , very swollen gums which causes a lot of pain and discomfort and difficulty eating . Going forward I have also been diagnosed with myositis and sjogrens, which the doctors have said that the nueropathy is due to the sjogrens. I currently take gabapentin which I don’t believe helps much. I am doing 6 months of ivig therapy which the doctor was hoping would help the nueropathy but I’m not seeing any relief .
I’ve tried every prescription med, otc meds, supplements, acupuncture , red light therapy chiropractor, , and medical marijuana. With no results. What do I do now .

My neuropathy seems to be progressing to the point where it hurts to walk. I'm looking for some good shoes and have considered ortho. Wondering if anyone has any review on those?

I am jacquimoi m M