1. < Neuropathy

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.

aaron_az | @aaroncush | Apr 25, 2023

Hi @vtgal , I am sorry to hear about your pain. Have you tried low-dose naltrexone (LDN). It is by no means a miracle cure buy may help lessen the pain. I started on it about a month ago and am starting to feel like it is helping. The only side effect I saw was it affecting my sleep but moving the dose to lunchtime seemed to fix that.

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1 reply
vtgal | @vtgal | Apr 25, 2023

I have not but will definitely check it out. Thank you!

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stallen | @stallen | Apr 26, 2023

Have you tried pot/thc gummies…I can’t speak to effectiveness, but have read others use it…perhaps it would help at night. I’m sorry for your neuropathy…and hope you find relief.

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1 reply
vtgal | @vtgal | Apr 26, 2023
In reply to @stallen "Have you tried pot/thc gummies…I can’t speak to effectiveness, but have read others use it…perhaps it..." + (show)
@stallen

Have you tried pot/thc gummies…I can’t speak to effectiveness, but have read others use it…perhaps it would help at night. I’m sorry for your neuropathy…and hope you find relief.

Jump to this post

I have tried the gummies and chocolate. Doesn’t really do much. Maybe I should try a stronger dose. Thanks!

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annregister | @annregister | Apr 26, 2023

OMG!!!!! I feel your pain. I hear it in your words. I was diagnosed with sensorimotor Polyneuropathy and small fiber neuropathy. I have tried everything, with really bad side affects. Just today….I went to pain management (1st time) and I was told that it looks like I’ve tried all the go to medications. What they suggested was to lose weight, exercise, get my diabetes under control. Well….my primary Dr. took me off of my diabetic meds because he said I had my A1C under control and I would love to get back to my life….walking three miles a day, chasing and teaching first graders, and driving. So now what????? I am out on disability through work but that only last a year. I’m so stressed out. I’m in extreme pain 24/7. I don’t know where to go to from here. Why won’t drs. listen instead of making us feel like it’s our fault we’re sick and in pain?

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3 replies
vtgal | @vtgal | Apr 27, 2023

Same boat. I’m looking for answers. Get this…. Original PCP said neuropathy is due to Amyloidosis. Rheumatologist said no. It’s not that. It’s radiation injury from radiation after lumpectomy. Radiation doc said no. Looks like a bone marrow issue. Oncologist said it’s not that! I’m back to now neurologist doing more tests and am going to do the genetic testing. It’s so frustrating!

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1 reply
julbpat | @julbpat | Apr 27, 2023
In reply to @annregister "OMG!!!!! I feel your pain. I hear it in your words. I was diagnosed with sensorimotor..." + (show)
@annregister

OMG!!!!! I feel your pain. I hear it in your words. I was diagnosed with sensorimotor Polyneuropathy and small fiber neuropathy. I have tried everything, with really bad side affects. Just today….I went to pain management (1st time) and I was told that it looks like I’ve tried all the go to medications. What they suggested was to lose weight, exercise, get my diabetes under control. Well….my primary Dr. took me off of my diabetic meds because he said I had my A1C under control and I would love to get back to my life….walking three miles a day, chasing and teaching first graders, and driving. So now what????? I am out on disability through work but that only last a year. I’m so stressed out. I’m in extreme pain 24/7. I don’t know where to go to from here. Why won’t drs. listen instead of making us feel like it’s our fault we’re sick and in pain?

Jump to this post

See if your neurologist will try Tegretol, which is a different seizure medicine than Gabapentin and Lyrica. It worked much better for me.

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1 reply
vtgal | @vtgal | Apr 27, 2023
In reply to @julbpat "See if your neurologist will try Tegretol, which is a different seizure medicine than Gabapentin and..." + (show)
@julbpat

See if your neurologist will try Tegretol, which is a different seizure medicine than Gabapentin and Lyrica. It worked much better for me.

Jump to this post

Thanks. I will check into that.

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gina5009 | @gina5009 | Apr 27, 2023
In reply to @aaroncush "Hi @vtgal , I am sorry to hear about your pain. Have you tried low-dose naltrexone..." + (show)
@aaroncush

Hi @vtgal , I am sorry to hear about your pain. Have you tried low-dose naltrexone (LDN). It is by no means a miracle cure buy may help lessen the pain. I started on it about a month ago and am starting to feel like it is helping. The only side effect I saw was it affecting my sleep but moving the dose to lunchtime seemed to fix that.

Jump to this post

You do not mention where you have your pain. Is it in your hands. If it is I have a suggeston for you. I have Raynaud's disease. This causes a compression of the blood vessels to my hands if they become cold. Therefore, it is important to always keep them warm. Gloves of course, but I find that Compression gloves are so much better. I also make some small square bags, fill them with rice and sew them closed Put them in the microwave for 1 minute. They are hot and stay warm for 5 or 10 minutes and they warm my hands. They are great if you are going outl they fit easily into coat or jacket pockets. Hope this helps.
Gina5009

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