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.

amimiof4 | @amimiof4 | May 1, 2023
In reply to @vtgal "My feet stay cold. Very cold. They feel the same. Like frozen and if o move..." + (show)
@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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I had the same intensity. It has lessened some or I’m just getting used to living with it. My gabapentin does help. My best to you.

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jldavis823 | @jldavis823 | May 1, 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?

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I wanted a cure from the pain, not opioids. A study I found from the Cleveland Clinic suggests 300 mg of CoQ10 and 20 mg of PQQ daily. Although I still have neuropathy, the pain is gone. Before this it felt like I was walking on hot coals. It’s not overnight, but th pain in my hands and a lot of the pain in my feet was gone after about 3 months. I’ve been taking these for a year. My feet are still mostly numb, but they are pain free.

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2 replies
elderbeeste | @elderbeeste | May 1, 2023

Interesting; these ae involved in energy production in the mitochondia of cells. I'll try it. Thanks

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annregister | @annregister | May 2, 2023
In reply to @jldavis823 "I wanted a cure from the pain, not opioids. A study I found from the Cleveland..." + (show)
@jldavis823

I wanted a cure from the pain, not opioids. A study I found from the Cleveland Clinic suggests 300 mg of CoQ10 and 20 mg of PQQ daily. Although I still have neuropathy, the pain is gone. Before this it felt like I was walking on hot coals. It’s not overnight, but th pain in my hands and a lot of the pain in my feet was gone after about 3 months. I’ve been taking these for a year. My feet are still mostly numb, but they are pain free.

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I would love to know exactly what these are.

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1 reply
jldavis823 | @jldavis823 | May 2, 2023
In reply to @annregister "I would love to know exactly what these are." + (show)
@annregister

I would love to know exactly what these are.

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CoQ10 is a supplement you can find anywhere. PQQ is also a supplement but not as easily available. I get both of mine off Amazon as subscribe and save automatic deliveries.

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 6, 2023

Just an FYI for anyone wanting to learn more about hereditary neuropathy. The Foundation for Neuropathy has an upcoming webinar on the topic.

FPN Webinar: Hereditary Neuropathies & the Benefits of Genetic Testing
Wed, Oct 11, 2023 10:30 AM - 11:30 AM CDT

The Foundation for Peripheral Neuropathy welcomes Amanda C. Peltier, MD, of Vanderbilt University Medical Center, and Emily Brown, a certified genetic counselor practicing at The Johns Hopkins Hospital, for a one-hour program on hereditary neuropathies and the benefits of genetic testing. During this webinar, our experts will address the problem of misdiagnoses and the benefits of getting genetic testing early on, to lead patients down the right path for treatment. This program will also address the value of genetic counseling for families that are impacted by hereditary diseases. There will be a Q & A session following the presentation.

Register for the webinar: https://register.gotowebinar.com/register/779832353893949280

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wendyhobbie | @wendyhobbie | Sep 6, 2023

I’ve been there; can’t be on my feet much, 6 months of chemotherapy infusion for lymphoma and 3 “minimally evasive” surgeries on my lumbar. Was an athlete years ago and now I love to just swing a tennis racket or golf club, maybe even ski downhill a few runs. It’s possible!! We have to see these things in our heads and make it happen in our lives because it’s too depressing to give in to the pain. We have to keep moving or the pain will only get worse. Let’s reimagine what we CAN do. Baby steps

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bettyg81pain | @bettyg81pain | Sep 6, 2023
In reply to @jldavis823 "I wanted a cure from the pain, not opioids. A study I found from the Cleveland..." + (show)
@jldavis823

I wanted a cure from the pain, not opioids. A study I found from the Cleveland Clinic suggests 300 mg of CoQ10 and 20 mg of PQQ daily. Although I still have neuropathy, the pain is gone. Before this it felt like I was walking on hot coals. It’s not overnight, but th pain in my hands and a lot of the pain in my feet was gone after about 3 months. I’ve been taking these for a year. My feet are still mostly numb, but they are pain free.

Jump to this post

I have taken the CoQ10 in liquid form (maybe I should buy more) but what is PQQ ??

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jldavis823 | @jldavis823 | Sep 7, 2023

PQQ, Pyrroloquinoline quinone, is a supplement as well. It it not as common so I buy it off Amazon because they always have it.

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ninibmr | @ninibmr | Jul 3 8:20pm

I am about at 1 yr since being diagnosed with breast cancer. So far I can't handle the anti-estrogen treatments. Now my hands ache all day every day. Why? Nothing seems to help. I'm getting depressed.

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