Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hi
I have had peripheral neuropathy going on five years now. The pain is unbearable! I have given up on Gabapentin as it does nothing to help me. The Doctors had me take all the way to 800mg Three times a day along with 60 mg Cymbalta every night.
I feel no doctor can help me. I have been through the mill.
I have Diabetes 2 and take Ozempic once a week on the lowest dose.
My new Diabetes doctor would like me to take a Vitamin B Complex with Alpha Lipoic vitamin for my pain. I have had tingling in my whole body since I had 3 weeks of radiation therapy for breast cancer which I pray is still gone. It feels like sand paper is all over me with the PN.
Does anyone else feel this way?
I will start my vitamin schedule this coming Wednesday.
Hi
I have had peripheral neuropathy going on five years now. The pain is unbearable! I have given up on Gabapentin as it does nothing to help me. The Doctors had me take all the way to 800mg Three times a day along with 60 mg Cymbalta every night.
I feel no doctor can help me. I have been through the mill.
I have Diabetes 2 and take Ozempic once a week on the lowest dose.
My new Diabetes doctor would like me to take a Vitamin B Complex with Alpha Lipoic vitamin for my pain. I have had tingling in my whole body since I had 3 weeks of radiation therapy for breast cancer which I pray is still gone. It feels like sand paper is all over me with the PN.
Does anyone else feel this way?
I will start my vitamin schedule this coming Wednesday.
Hi,
Thank you for every bit of info you gave me to look up on the sites you listed. I have been to the foundation for peripheral neuropathy site and really feel there might be something there for me to try!
I have book marked the three sites and will gather notes for me on vitamins and teas to use in foot baths.
To answer your question, I have been diagnosed with Diabetic Pneuropathy about 4 years ago, after my spinal fusion surgery. I have screws in my back and a donor disk in an area of my back. I do wonder if that was the beginning of my feet first feeling PN. I talked to my surgeon and told him my feet were “running” I couldn’t calm them down. Then breast cancer surgery and radiation. I started with the sand paper feeling on my body.
Hi,
Thank you for every bit of info you gave me to look up on the sites you listed. I have been to the foundation for peripheral neuropathy site and really feel there might be something there for me to try!
I have book marked the three sites and will gather notes for me on vitamins and teas to use in foot baths.
To answer your question, I have been diagnosed with Diabetic Pneuropathy about 4 years ago, after my spinal fusion surgery. I have screws in my back and a donor disk in an area of my back. I do wonder if that was the beginning of my feet first feeling PN. I talked to my surgeon and told him my feet were “running” I couldn’t calm them down. Then breast cancer surgery and radiation. I started with the sand paper feeling on my body.
Thank you for your response. I was Dx'd with PN years ago, and it has gradually gotten worse, but it is to the point that it really bothers me. I have the numbness all the time, so yes, I have numbness with the color. But, I only notice the color changes in the shower. That could be because I am standing on my own [w/o cane] for probably the longest period of time that I stand? I have the pins and needles in my feet and a gritty feeling on the bottom of my feet when I walk. My PN is up to just under my knees and there is like a "line" just under my knees, where the PN is up to, and the skin below that line is much whiter and has a completely different feel than the skin elsewhere on my body. My calves and feet are nearly always swollen, but at times my ankles and feet are extremely swollen. [Almost like a cardia involvement] I am up to 1800 -2300mg of Gabapentin a day and take 2 x-strength Tylenol with each dose of Gaba. The relief is not long, but I cannot go over 2300 mg Gaba because I also have an involuntary neurological body movement and it causes me to fall. [I'm a MESS!😉] I haven't found any topicals that help. Thanks again for your empathy and offer to help. I appreciate that very much. I wish I could get a Dr to take as much interest as you! 😊
P
Wow. Sounds like you may have found what some of us have been searching for for years. At the risk of bring too intrusive would you mind sharing with me as much detail as you can about the shoes and metatarsal pads? Just maybe, I can use this data to rteplicate your experience.
Arny
Hi
I have had peripheral neuropathy going on five years now. The pain is unbearable! I have given up on Gabapentin as it does nothing to help me. The Doctors had me take all the way to 800mg Three times a day along with 60 mg Cymbalta every night.
I feel no doctor can help me. I have been through the mill.
I have Diabetes 2 and take Ozempic once a week on the lowest dose.
My new Diabetes doctor would like me to take a Vitamin B Complex with Alpha Lipoic vitamin for my pain. I have had tingling in my whole body since I had 3 weeks of radiation therapy for breast cancer which I pray is still gone. It feels like sand paper is all over me with the PN.
Does anyone else feel this way?
I will start my vitamin schedule this coming Wednesday.
Sorry for your pain. I too, have PN (in my feet). I too, have Diabetes 2 but I don't take Ozempic. I too, have tried Gabapentin, Cymbalta, Vitamin B, Alpha Lipoic acid and more. I've tried many treatments, creams, blah. blah. Nothing has worked. Not even a little. I am strongly considering a spinal cord stimulator. I will definitely try the trial for about 1 week. If it works to a degree, I will have the implanted SCS. I have very little to lose with the trial. Did you ever consider this? I pray for you.
Hi,
I did not consider this treatment. I pray 🙏 it will work for you.
I have many other problems to go along with my NP. My back has a bunch of screws in it in my upper region and that gave me relief in my back for about eight years now. I am starting with pain in my lower back, but do not think I am young enough to benefit from another surgery. I had mri done and shows pinched disk, etc.
So, if the spinal cord stimulator works for you, please let me know. If I hear it helps you, I may consider that.🙂 Right now I am using boots that give my feet 🦶🏽circulation and it does help my NP. Of course it always comes back. The boots do help me somewhat though.
Have you tried Alpha lipoic Acid? My Endo recommended it to me. And Multi Vitamin B also. Talk to your physician about it.
Lots of prayers for you. Thank you for your question.
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Hi
I have had peripheral neuropathy going on five years now. The pain is unbearable! I have given up on Gabapentin as it does nothing to help me. The Doctors had me take all the way to 800mg Three times a day along with 60 mg Cymbalta every night.
I feel no doctor can help me. I have been through the mill.
I have Diabetes 2 and take Ozempic once a week on the lowest dose.
My new Diabetes doctor would like me to take a Vitamin B Complex with Alpha Lipoic vitamin for my pain. I have had tingling in my whole body since I had 3 weeks of radiation therapy for breast cancer which I pray is still gone. It feels like sand paper is all over me with the PN.
Does anyone else feel this way?
I will start my vitamin schedule this coming Wednesday.
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5 ReactionsWelcome @weinham007, Sorry to hear the medication isn't helping with your neuropathy pain. If you haven't already seen the website, the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/) has a good list of supplements, including the ones you are starting, that have shown to help with neuropathy in their document of complementary and alternative treatments here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.
There are also quite a few discussions on diabetic neuropathy you might want to scan through. Here is a link that shows the discussions and comments - https://connect.mayoclinic.org/search/?search=diabetic+neuropathy.
Have you been diagnosed with diabetic neuropathy?
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5 ReactionsHi,
Thank you for every bit of info you gave me to look up on the sites you listed. I have been to the foundation for peripheral neuropathy site and really feel there might be something there for me to try!
I have book marked the three sites and will gather notes for me on vitamins and teas to use in foot baths.
To answer your question, I have been diagnosed with Diabetic Pneuropathy about 4 years ago, after my spinal fusion surgery. I have screws in my back and a donor disk in an area of my back. I do wonder if that was the beginning of my feet first feeling PN. I talked to my surgeon and told him my feet were “running” I couldn’t calm them down. Then breast cancer surgery and radiation. I started with the sand paper feeling on my body.
Anyhow, thank you again for the information 🙂
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6 ReactionsThe Foundation for Peripheral Neuropathy also has a YouTube channel where you can see all of their past webinars and other informative neuropathy related videos - https://www.youtube.com/@foundationforperipheralneu4122/videos.
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1 ReactionThank you. Will look at this also🙂
Start doing research on low dose Naltrexone. I think it is helping some with NP. If it looks promising, let me know.
Lou
Please share this with all. Grateful and Thanks!
Sorry for your pain. I too, have PN (in my feet). I too, have Diabetes 2 but I don't take Ozempic. I too, have tried Gabapentin, Cymbalta, Vitamin B, Alpha Lipoic acid and more. I've tried many treatments, creams, blah. blah. Nothing has worked. Not even a little. I am strongly considering a spinal cord stimulator. I will definitely try the trial for about 1 week. If it works to a degree, I will have the implanted SCS. I have very little to lose with the trial. Did you ever consider this? I pray for you.
Hi,
I did not consider this treatment. I pray 🙏 it will work for you.
I have many other problems to go along with my NP. My back has a bunch of screws in it in my upper region and that gave me relief in my back for about eight years now. I am starting with pain in my lower back, but do not think I am young enough to benefit from another surgery. I had mri done and shows pinched disk, etc.
So, if the spinal cord stimulator works for you, please let me know. If I hear it helps you, I may consider that.🙂 Right now I am using boots that give my feet 🦶🏽circulation and it does help my NP. Of course it always comes back. The boots do help me somewhat though.
Have you tried Alpha lipoic Acid? My Endo recommended it to me. And Multi Vitamin B also. Talk to your physician about it.
Lots of prayers for you. Thank you for your question.