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

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.

Why do you write that?

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.

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.

Hello @erichendrix and welcome to Mayo Clinic Connect. I can sense your frustration and exhaustion in your post. You have been through quite a long journey with your health, and those feelings are normal.

I wonder if you have been offered an appointment at a pain clinic that can help when other measures aren't working? Here is some information if you're interested in reading more:
- Pain Medicine: https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061

I know of only two prescription drugs, from personal experience, that help relieve my neuropathy symptoms: Hydromorphone HCL (Dilaudid), a synthetic opioid, and Zolpidem Tartrate (Ambien). That’s right – the sleeping pill Ambien, a sedative-hypnotic. An analogy might be to consider neuropathy as a type of “fire”, with Dilaudid being a “fire extinguisher”. Been trying to get a prescription for Dilaudid but no luck. As a last resort, I am now using medical marijauna, suggested to me by a palliative care nurse, which I think is analogous to fighting fire with fire. It helps some. I am also taking all the known supplements that may support the body’s efforts to repair or even regenerate dead, damaged and dying nerve tissue. Doing Epsom Salt warm foot baths, Lidocaine cream on my feet, both of which, along with light exercise and whatever else I can discover, provide some temporary relief. It does not seem likely I can reverse this neuropathy, stop the progression of it, or even slow it down. However I am giving it the college try.

Well I would definitely skip Mayo Clinic in Arizona.

Prescribed Pregabalin, Duloxetine, Nortriptyline, Naloxone, Gabapentin, and Buprenorphine for neuropathy, none of which helped at all. Very bad adverse reaction to Naloxone, the horrible “side” (think “direct”) effects of which I struggle to describe. I was on my knees praying to God that it would wear off. A few days ago was prescribed Buprenorphine which, to my great shock and dismay, was, conservatively, three times as bad as Naloxone and forced me to go to the ER, where they did nothing helpful, however they did succeed in performing a useless chest x-ray, CT scan, and blood test, all clear as I knew they would be. An overnight hospital stay, then back home with the recommendation from my GP that I contact the Mayo Clinic where I might benefit from a team of experts looking at my case. Not sure why my medical team here is not a "team"? Communication breakdowns everywhere.

My story: BRCA2 genetic mutation, bilateral breast cancer (twice on the right side), got cut (surgery), burned (radiation therapy), and poisoned (chemo”therapy” – the usual treatments. That was 5-6 years ago. Now have some kind of neuropathy, which one of my neurologists considered to be refractive to most prescribed medications. My neuropathy is permanent, progressive, and seems to be getting worse by the day. At first, it was no doubt a “side” effect of chemo, (CIPN Chemotherapy Induced Peripheral Neuropathy). Over the last year or two, it may have changed into some other type of neuropathy. About all I can do anymore is make it from the bedroom to the bathroom. Hard to stand up or walk. Serious and progressive muscle weakness, legs feel heavy as lead, numbness crawling up my lower legs and forearms. Hands feel like fuzzballs, and my feet go berserk all day, every day with numbness and hyper-sensitivity. Have fallen several times, legs go out from under me. Balance and walking gait are shot. My next post will catalog the medicines and etc., that I have tried or are still using.

@taxlady, in addition to the helpful comments you've received from members, I thought you might appreciate a review of past discussions about chemo-induced neuropathy. Loads of helpful tips.

- Chemo-related Neuropathy https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/
- Need hope: Neuropathy from chemo https://connect.mayoclinic.org/discussion/needshope/
- Chemo-induced Peripheral Neuropathy and Breast Cancer https://connect.mayoclinic.org/discussion/neuropathy-11/
- Baclofen for Chemo-induced Peripheral Neuropathy? https://connect.mayoclinic.org/discussion/baclofen-users/
- Cancer survivor now developing late side-effect of neuropathy https://connect.mayoclinic.org/discussion/cancer-survivor-now-developing-neuropathy/