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

I have been to two pain clinics. The first one had a big sign at the front desk that read “We do not prescribe narcotics”. What? Oh, I remember! We’re in the throes of the greatest opioid crisis in history. Looks like I picked a bad time to get neuropathy. Prescribed a higher dose of Pregabalin, which my GP prescribed earlier. No help. How about this - the nurse from a neurology clinic I was at called me the day before my appointment to tell me that “we do not prescribe narcotics so do you still want to keep your appointment?” What? The last pain clinic where I was seen did start a trial treatment plan with Dilaudid, but, as I found out, much to my dismay, times have changed. Their protocol is that (for every appointment) I had to submit a urine sample and sign off on their drug screen paperwork to get a one month prescription refill, which the doctor canceled at my followup appointment, because he concluded I was not making enough progress to the goals he asked me to provide during my initial appointment. He did, however, succeed in making me feel like a criminal for suggesting a narcotic. Guilty ‘til proven innocent, if that’s even possible. Not sure who actually runs the clinic, the doctor or his lawyer. They got this narcotic thing locked down so hard and the bar set so high, I’m not sure how anybody qualifies for a prescription anymore. But, not to worry – he got his $600 for eight minutes of his time as he showed me the door, sending me home with nothing. Started medical marijuana the next day.

I am in no way advocating for you to stop using anything your doctor prescribes or anything that is helping. I would like to add a few things that might be of a tiny bit of help. I have not tried this but my friends husband uses a cbd cream on his feet twice a day and feels it helps.
I put my feet on an ice pack every night before I go to sleep. When they are cold and the fire is out, then the gabapentin helps me sleep. This does double duty for me helping with hot flashes.
Like @amandajro I can hear your frustration, and I am sorry you are going through this. Would you consider a work up at a large center or university, contrary to others. My husband and I both received excellent help at Mayo.

Why do you write that?

I have had 4 interactions with neurologists and neurosurgeons in Phoenix and did not feel like it was worth the time or expense. The best example is when Mayo decided I needed to see the surgeon instead of a neurologist like I asked for. That doctor spent the entire time telling me how my cerebral palsy (right-sided) couldn’t be causing the neuralgia issues on my left side. Totally correct but not helpful in the slightest. They tend to focus on my CP when the issues are clearly not related.

I started gentle yoga classes 3 times a week in December and the exercises are definitely helping the chemo-induced neuropathy in my toes. Nothing else seems to have helped.

Does anybody have any suggestions about how to stop chemo caused neuropathy? My neuropathy wasn't too bad until AFTER my Dr. stopped the Oxaliplatin infusions. About a month later the numbness/tingling came on like gang busters and it has been with me for 3 or 4 months now. I walk, massage, my hands and feet, do finger exercises but nothing seems to be slowing it down. I had my vitimin D and B12 levels checked (D was fine B12 was very high). I am desperate to get rid of this; not only because it's so annoying, but if I can get rid of it maybe I can go back on the Oxaliplatin which was working well to shrink my tumors. (New drug is not shrinking them and they may be growing). Does anybody know of anything I cam try? I was told that if it doesn't go away in a year, it's never going away. So I want to do everything that I can to help the recovery from neuropathy along. Thanks.

You might try Curcumin, although I don't know if it can reverse damage already done. But it may also target the cancer cells to be targeted by the chemotherapy you are now taking.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9227889/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277549/
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-020-07256-8
https://onlinelibrary.wiley.com/doi/abs/10.1002/ptr.7225

My husband has exactly this experience. His neuropathy definitely got worse after the oxaliplatin was stopped. They do recommend that he keep his B12 levels up and take B6 daily. They told him that it could take a long time to help. I don’t know how long.

His personal experience is that he does notice some small improvement. It is going on two years since his chemo and he says he is finding it easier to write now. He did have a lot of trouble with that. He says that both his hands and his feet have better and worse days. He says that he finds that keeping active seems to make them somewhat better.

Thanks so much for your kind reply. Mine also seems to fluctuate which gives me hope that it can improve. The fact that your husband has made it 2 years out from chemo also gives me a little hope. If I can keep kickin' for 2 more years I will try to just be grateful and live happily with this nuisance.

I don’t know what kind of cancer or the specific treatment you have had but my husband has grastric adenosquamous carcinoma. That is a tough diagnosis. If he can keep going for two years, I have great hopes that you can too. Never give up hope of small, slow improvements in your neuropathy. He is not all the way back, but I do agree with him that I see gradual improvement. There have been times that he has been very down and discouraged, but overall he is glad he has undertaken the very aggressive treatment plan to prolong his life. If I can answer any other questions for you, I will answer or ask my husband for you