Looking to connect with people who have non-diabetic neuropathy

I have had chemo induced neuropathy in both feet, finger tips, and left leg from the knee down since 2020 when I was diagnosed with ovarian cancer. Nobody at the hospital prepared me for neuropathy following my first chemo so I had nothing for the pain. The pain was so bad it was the closest I came to wanting to kill myself. I was prescribed Lyrica (can't do gabapentin) which helped tremendously during and after chemo. Off the Lyrica for nearly 2 years and now intermittent shooting pain is starting up again. Tried Lyrica recently but had to go off it because of dizziness. In addition to neuropathy, I have constant back pain (5 surgeries), have hypothyroidism, and very recently was diagnosed as pre-diabetic. My PT gave me the name of a neurologist for the neuropathy who I just recently saw. She ordered a battery of blood tests and to my surprise I learned I'm pre-diabetic. Thankfully my A1C is at the very bottom of the range. After talking with my older brother, I'm treating that through diet and exercise. My B12 came back normal, but was low. The neurologist told me B12 can have an affect on neuropathy as well as other things. I will start taking a B12 vitamin starting tomorrow. I'm considering replacing my PCP who I've been seeing for many years. My mother died from diabetes and my older brother is pre-diabetic. All of this is in my family history but she never once did an A1C blood test and I'm soon to be 76. As for the neuropathy, I've learned chemo, diabetes, and thyroid disease are all causes. I feel like I only need my PCP these days to write scripts or verify or deny what I already know. Sometimes I feel like I'm the doctor!

You are welcome. You’re not alone!

Hi Donald, We removed your personal email address from your message above to @artscaping. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

Have you tried any complementary therapies? The Foundation for Peripheral Neuropathy has a lot of information on things to try that others have found helpful.

-- Complementary Therapies: https://www.foundationforpn.org/living-well/complementary-therapies/

I’m in Texas. Is there a place close to Dallas or Waxahachie? All everyone tells me is there is no hope for me.

@pamelaz, Here is list of teaching hospitals in Texas that may be a good place to seek help with your different symptoms - https://thotonline.org/our-members/

Which of your symptoms is most bothersome for you? Have you found anything that provides some relief?

@pamelaz, Here is list of teaching hospitals in Texas that may be a good place to seek help with your different symptoms - https://thotonline.org/our-members/

Which of your symptoms is most bothersome for you? Have you found anything that provides some relief?

The burning, tingling, electric shock that won’t stop.

I have had chemo induced neuropathy in both feet, finger tips, and left leg from the knee down since 2020 when I was diagnosed with ovarian cancer. Nobody at the hospital prepared me for neuropathy following my first chemo so I had nothing for the pain. The pain was so bad it was the closest I came to wanting to kill myself. I was prescribed Lyrica (can't do gabapentin) which helped tremendously during and after chemo. Off the Lyrica for nearly 2 years and now intermittent shooting pain is starting up again. Tried Lyrica recently but had to go off it because of dizziness. In addition to neuropathy, I have constant back pain (5 surgeries), have hypothyroidism, and very recently was diagnosed as pre-diabetic. My PT gave me the name of a neurologist for the neuropathy who I just recently saw. She ordered a battery of blood tests and to my surprise I learned I'm pre-diabetic. Thankfully my A1C is at the very bottom of the range. After talking with my older brother, I'm treating that through diet and exercise. My B12 came back normal, but was low. The neurologist told me B12 can have an affect on neuropathy as well as other things. I will start taking a B12 vitamin starting tomorrow. I'm considering replacing my PCP who I've been seeing for many years. My mother died from diabetes and my older brother is pre-diabetic. All of this is in my family history but she never once did an A1C blood test and I'm soon to be 76. As for the neuropathy, I've learned chemo, diabetes, and thyroid disease are all causes. I feel like I only need my PCP these days to write scripts or verify or deny what I already know. Sometimes I feel like I'm the doctor!

I just read your post about neuropathy pain and I also would like you to send me information on what helps !
Thank You,
Donald Goss