Chemotherapy-induced neuropathy: What helps get rid of it?

This is my Neuropathy Odyssey:

See a neurologist. I have had chemo-induced peripheral neuropathy for years. It has become worse over the years to the point I had it pretty much in my whole body. I went to a neurologist who did an EMG and Skin Biopsies. I was diagnosed with small fiber neuropathy. There is no cure. I take Cymbalta which helps with the worst of it. Also check out these websites - Winsantor.com; https://www.foundationforpn.org/; an https://pnhelp.org/.
Lots of information and support groups where you can learn about PN in general. Winsantor focuses on Chemo-induced Peripheral Neuropathy.

I developed progressive peripheral neuropathy after treatment for small cell lung cancer. I was told by the oncologist that these symptoms resolve after completion of treatment. It’s been a year and my painless neuropathy has not improved and my proprioception and balance is getting worse. I would appreciate all and any suggestions

Hi, glad to hear that your cancer is gone. Mine is too 🤗but the nerve pain has gotten progressively worse. It’s been 5 years since chemotherapy but 6 years since I was diagnosed with fibromyalgia. That’s a tricky condition…
Physical therapy, supplements added to my medication and I’m trucking on. I see a neurologist, GP and pain manager every 3 months. . We learn to count our blessings…get outside and take in life 🌅

Hi @tymish17 and @wendyhobbie, I moved your messages to this existing discussion:
- Chemotherapy-induced neuropathy: What helps get rid of it? https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

I did this so you can read what is helping others and connect with members like you easily.

You might also be interested in more related discussions about neuropathy and managing side effects of cancer in the
- Cancer: Managing Symptoms support group https://connect.mayoclinic.org/group/cancer-managing-symptoms/

It’s been 5 years and I’m feet are “on fire “ at night. I take 400ml magnesium glucinate twice a day now along with Alpha alipoic acid along with my meds and supplements. I still apply lidocaine ointment to the bottoms of my feet and get off them more frequently. And I gave up Diet Coke 🥳

What I meant was that my feet are doing better…I switched from 600 gabepentine 3 times a day to 100 Lyrica 3 times.
Still feel neuropathy but better now. Still can’t wear anything binding on ankles but I just cut my socks off the top of my feet.

In the summer of 2021 I participated in a clinical trial for chemo induced neuropathy. I've added a link to this trial at the bottom. Unfortunately it appears that recruiting volunteers has been a challenge, and therefore no final results are available yet. The study involves the use of the supplement nicotinamide riboside. I personally experienced no significant improvement, but I also don't know if I received the supplement or the placebo. Two oncologists with patients enrolled in the trial told me they were seeing positive results. I'm not advocating for or against. I'm just throwing this out there.
https://clinicaltrials.gov/search?cond=Peripheral%20Neuropathy&term=Chemotherapy-Induced%20Peripheral%20Neuropathy&intr=Niagen

Perhaps the reason there are so few volunteers is because onco’s don’t think neuropathy symptoms don’t need attention and therefore don’t refer them to this trial? As if ‘side effects of chemo are part of having cancer’-. As was the case with ‘us’. Please, people, ask for help and if you don’t get help, find someone else-.

I had 2 oncologists fail to diagnose my neuropathy. I self-diagnosed by comparing my symptoms on a cancer center's website. That diagnosis was confirmed when I joined the clinical trial. I only learned of this trial when a friend spotted an ad in the newspaper.