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

Posted by taxlady @taxlady, Jan 31, 2023

I finished chemo April of 2022
I have neuropathy in my fingers and feet. It doesn’t seem to be going away. What are treatments I can do to help get rid of it.

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Hello,
I wore the frozen gloves and socks during my taxol to help with neuropathy-
My left two fingers were affected and I would like to know a treatment.
I love to golf, and I am not sure if this is my “new normal” or it will repair in time.
It has been about a year since it started.

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@boathouse

Hello,
I wore the frozen gloves and socks during my taxol to help with neuropathy-
My left two fingers were affected and I would like to know a treatment.
I love to golf, and I am not sure if this is my “new normal” or it will repair in time.
It has been about a year since it started.

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I had taxol/carboplatin and wore the frozen gloves, slippers and hat. My hands are fine, my toes are somewhat numb (some days more than others), I lost most of my hair, but not all. I get regular massages and have her work on my toes, but really don’t think it helps much. I think it is my new normal.

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Hi,
I had chemo/radiation 15 years ago, neuropathy improved first in my hands but took a long time (2-4 years?) and are perfectly fine now The numbness and stiffness in toes did not, some days were worse than others. A few months ago, I started bathtub exercises where I stretch my toes out, each toe for a count of five. Every night in hot bathtub (that also helps me sleep). I’m shocked how flexible my feet have become and most days my feeling is back in my toes. I hike 12-14 hilly miles a week and horseback ride regularly. Now I’m calling it bathtub yoga and have extended the exercises. I swear I’ll have abs at age 62! Don’t worry, your hands will come back! Keep golfing! Type, write, garden. Use those hands as if nothing is wrong! And golf your heart out!!

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I also have neuropathy from chemo. I believe from the original flavors of taxol, Adriamycin, Cytoxin. Then further irritated by the host of medications to follow. My solution to the ever increasing problem of how do I get to sleep with my feet on fire is the very opposite of @drcvs , I put my feet on an ice pack every night when I lay down with my book, when my feet are very cold, I go to sleep. I know it sounds ridiculous, but it works for me. Otherwise I lay there half of the night feeling like my feet should come with a fire warning label. 🙄I know they cannot repair the nerves, but this allows me to sleep and prepare for another full day of life.
So now we have hot water, and ice pack, any other tips out there?

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@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/
- Does anyone have a treatment for Neuropathy due to chemo https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/
- 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/

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Not sure what’s worse – the opioid crisis or the nightmare of neuropathy. 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.

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@erichendrix

Not sure what’s worse – the opioid crisis or the nightmare of neuropathy. 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.

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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.

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@erichendrix

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.

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Well I would definitely skip Mayo Clinic in Arizona.

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@erichendrix

Not sure what’s worse – the opioid crisis or the nightmare of neuropathy. 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.

Jump to this post

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.

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@erichendrix

Not sure what’s worse – the opioid crisis or the nightmare of neuropathy. 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.

Jump to this post

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.

You will notice that I have moved your post into an existing discussion on Chemotherapy Induced Neuropathy which you can find here:
- Chemotherapy-induced neuropathy: What helps get rid of it?: https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

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

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