Desperate for Help! Neuropathy related to cancer or hereditary?

Posted by vtgal @vtgal, Apr 25, 2023

I was diagnosed with neuropathy about a year ago soon after starting on Letrazole for breast cancer. It has moved from my feet to my hands now. It is disabling and painful. I had to retire on disability which was not my plan. Nothing works for the pain. I have tried gabapentin, Lyrica, pregabalin and oxy. I use Sombra cream which helps somewhat. I’ve tried TENS, I use prescription Lidocaine patches, I have tried Tramadol, and all I can think of. It’s worse at night.

I believe my neuropathy may be hereditary. My mom had it but later in life. I’m 59 and she didn’t have it til about 80. I was thinking the Letrazole may have triggered it. I came off of it and am currently not taking any meds for the cancer. The neuropathy has only gotten worse.

I need a miracle! Does anyone have an answer to take away my pain? Thanks

Interested in more discussions like this? Go to the Neuropathy Support Group.

@davelobb12

Just like me you have done it all. I tried accupuncture also. For sleeping the best think is Medical Cannibas. You don't have to smoke it. you can vape or gummies. It works. As far as pain the doctors don't understand this disease but if you can get something like Tramadol it will help. The Medical establishment has let us down. I dont know of any thing being done for this.

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So sad. I have cannabis but the recommended amount does nothing for me. I have also tried Tramadol. I also did acupuncture for a few months weekly. Like I said, I think I’ve tried it all…almost. Learning a few things on here I will try. Good luck to you.

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Oh, sometimes I use pain relieving cream, lidocaine 4% by equate. I ordered it from Amazon. Maybe it will help you a little. Doesn’t seem to be anything that helps. Anybody/everybody. Darn peripheral neuropathy. Wishing you a nice weekend,
Bcool123

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@bcool123

Oh, sometimes I use pain relieving cream, lidocaine 4% by equate. I ordered it from Amazon. Maybe it will help you a little. Doesn’t seem to be anything that helps. Anybody/everybody. Darn peripheral neuropathy. Wishing you a nice weekend,
Bcool123

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You can also get a compounded prescription for a topical cream with a higher lidocaine content & other ingredients for pain. I get mine from a pain management doctor. He also prescribed compounded Ketamine troches that help a bit too. I am on 1800 mg of Gabapentin per day, as well. People tell us to exercise, but light housework & errands cause so much pain in the afternoon & night, it's not worth it. I just sold my treadmill & will try a stationary bike to strengthen my legs. My neurologist told me biking is much better than walking, as it stretches & strengthens the legs.

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@cher27

You can also get a compounded prescription for a topical cream with a higher lidocaine content & other ingredients for pain. I get mine from a pain management doctor. He also prescribed compounded Ketamine troches that help a bit too. I am on 1800 mg of Gabapentin per day, as well. People tell us to exercise, but light housework & errands cause so much pain in the afternoon & night, it's not worth it. I just sold my treadmill & will try a stationary bike to strengthen my legs. My neurologist told me biking is much better than walking, as it stretches & strengthens the legs.

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Thanks for the info. Most Exercise is out of the question for me but I do have a pedal I can sit and do. I will have to try the prescription cream.

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@vtgal, you may also be interested in these related discussions about cancer-related neuropathy, although it is not clear that your neuropathy is related to cancer, is it?

- Breast Cancer and Neuropathy: https://connect.mayoclinic.org/discussion/just-to-say-hello/
- Chemo-induced Peripheral Neuropathy and Breast Cancer https://connect.mayoclinic.org/discussion/neuropathy-11/
- Need hope: Neuropathy from chemo https://connect.mayoclinic.org/discussion/needshope/

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To vtgal Could you tell me if you had chemo for your breast cancer. I got neuropathy from chemo after discovering I had ovarian cancer. Some cancers such as yours and mine can be aggressive so they are treated with some chemo drugs that are noted for causing neuropathy. I am presently on Nortriptyline. This drug is actually for depression but it also works for neuropathy as well. I was originally started on five 10mg pills at bedtime along with 2 capsules twice daily of Lyrica. I am now on three capsules of the Nortriptyline and still two at bedtime of the Lyrica and two in the morning. The pain is gone but the numbness and pins and needles remain. This is very disturbing also but at least the pain is not there. I had pain in my legs at first that was so bad I cried with it. Gabapenten did not even touch the pain I had. I had to take Tylenol 3 with codeine. It takes the pain away but the feeling like you’ve been hit by a Mac truck the next day is there. When I met a neurologist is when I finally found relief from his prescriptions. I hope this helps you because I know that feeling of being abandoned and left with the pain to deal with on your own. With this illness you have to be your best advocate. I hope you find what works best for you with this horrible pain. Sending you hugs and best wishes.

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I wonder if you guys could describe your pain. My feet gets so cold they just burn with the cold. Or they get fire burning hot. Wondering what you mean by painful. Wishing peace to you all, Bcool

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@bcool123

I wonder if you guys could describe your pain. My feet gets so cold they just burn with the cold. Or they get fire burning hot. Wondering what you mean by painful. Wishing peace to you all, Bcool

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My feet stay cold. Very cold. They feel the same. Like frozen and if o move my toes they will break. The sensitivity is awful. I can’t sleep with blankets on my feet at night. I can’t wear shoes that cover my toes. Sometimes there are very sharp pains that shoot through my feet like a knife. I wouldn’t wish this on anyone.

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@vtgal

My feet stay cold. Very cold. They feel the same. Like frozen and if o move my toes they will break. The sensitivity is awful. I can’t sleep with blankets on my feet at night. I can’t wear shoes that cover my toes. Sometimes there are very sharp pains that shoot through my feet like a knife. I wouldn’t wish this on anyone.

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Has affected my balance as well

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I have a similar history. No help. The drugs just make me sleepy and in a brain fog and constipation ,I don’t even use them.
A certified acupuncturist and certified in Chinese medicine has helped me immensely. Along with Physical Therapist.
I have a firestorm in my legs. But with the above I don’t even take Aleve anymore. Yes, still have firestorm, but I know it is my life now.
I awoke 10/21 and my legs were rubber, I could not stand or walk. I was in a walker BEFORE chemo for Hodgkin Lymphoma. The drug they used had side affect of neurological damage. But nobody cares, not their problem says oncology doc.
Medicine in this country is horrible.

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