Hello folks - @nkhan1958; @johnbishop; @pfbacon,; @sarah_leanne - I was diagnosed with neuropathy at Mayo Clinic in Rochester a few years back and have the numbness, ultra sensitivity, tingling, burning and pain. I was prescribed Gabapentin and only take that at night because I can't function during the day if I take as much as they want me to. I also take the Gabapentin for neck and back pain. It helps me sleep, but not sure if it does anything for the pain and I'm 99% sure it has some bad side effects, which I HATE!! On top of Mayo suggesting I have my fourth EMG, they recently suggested I start taking Lyrica, which I refused. I don't know about the rest of you, but I can't handle another EMG. Its got to be the worst procedure ever known to man. Anyway, I have been doing tons of research on alternatives to prescriptions for neuropathy and found some good info on Alpha Lipoic Acid for it. I ordered some from one of the reputable vitamin companies I purchase many of our vitamins from and started taking it a couple days ago. I am thinking it might take a bit to get into my system and start working, but I will keep you all posted on my progress and whether it helps or not. I am a federal employee and was told I'm not allowed to use CBD oil products, more specifically if they contain any THC, which from what I am reading, is the only kind worthwhile using. I retire in about 21 months, not that I'm counting. 🙂
Hi @pjfrahm, welcome to Connect. Thanks for sharing. I also was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo Clinic. I only have the numbness so there was no drug treatment prescribed since there are not any available. I take supplements also to help with the numbness. It seems to have stopped or at least slowed down the progression of the neuropathy for me. R-ALA is one of the supplements I take also. You can read my story and find the links to how I found what has helped me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I retire from my second career of 21 years at the end of this year...but I'm not counting ☺ Good luck on your retirement! It's good to do your research.
Hi @pjfrahm, welcome to Connect. Thanks for sharing. I also was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo Clinic. I only have the numbness so there was no drug treatment prescribed since there are not any available. I take supplements also to help with the numbness. It seems to have stopped or at least slowed down the progression of the neuropathy for me. R-ALA is one of the supplements I take also. You can read my story and find the links to how I found what has helped me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I retire from my second career of 21 years at the end of this year...but I'm not counting ☺ Good luck on your retirement! It's good to do your research.
Mayo has never really given me any answers on the cause of my neuropathy as I've asked if it could be nerve damage from spinal fusion I had in 2002. I never had any issues with my feet prior to that time. They claim it isn't and I'd have to have another EMG (NOPE!!!) to diagnose for sure. I'd rather just play the guessing game if they haven't given me an answer after 3 prior EMG's, why would one more make any difference. BTW, my husband thinks I'm nuts because every night when I get home from work, I sweep our kitchen, entryway and dining room. I can feel everything, tiny bits of sand, salt and crumbs and they actually hurt. Guess only someone with neuropathy issues would understand. He could always save me the trouble and do it himself. (Now, THAT's FUNNY!!!). 😀
Hello folks - @nkhan1958; @johnbishop; @pfbacon,; @sarah_leanne - I was diagnosed with neuropathy at Mayo Clinic in Rochester a few years back and have the numbness, ultra sensitivity, tingling, burning and pain. I was prescribed Gabapentin and only take that at night because I can't function during the day if I take as much as they want me to. I also take the Gabapentin for neck and back pain. It helps me sleep, but not sure if it does anything for the pain and I'm 99% sure it has some bad side effects, which I HATE!! On top of Mayo suggesting I have my fourth EMG, they recently suggested I start taking Lyrica, which I refused. I don't know about the rest of you, but I can't handle another EMG. Its got to be the worst procedure ever known to man. Anyway, I have been doing tons of research on alternatives to prescriptions for neuropathy and found some good info on Alpha Lipoic Acid for it. I ordered some from one of the reputable vitamin companies I purchase many of our vitamins from and started taking it a couple days ago. I am thinking it might take a bit to get into my system and start working, but I will keep you all posted on my progress and whether it helps or not. I am a federal employee and was told I'm not allowed to use CBD oil products, more specifically if they contain any THC, which from what I am reading, is the only kind worthwhile using. I retire in about 21 months, not that I'm counting. 🙂
I use CBD Isolate which I imported from China to Australia. It has zero THC but treats my identical symptoms very well. While not eliminated the symptoms of CIPN have been reduced my 90%. We are now running Government monitored clinical trials in Aus and I have joined that program.
I use CBD Isolate which I imported from China to Australia. It has zero THC but treats my identical symptoms very well. While not eliminated the symptoms of CIPN have been reduced my 90%. We are now running Government monitored clinical trials in Aus and I have joined that program.
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Hi @pjfrahm, welcome to Connect. Thanks for sharing. I also was diagnosed with idiopathic small fiber peripheral neuropathy at Rochester Mayo Clinic. I only have the numbness so there was no drug treatment prescribed since there are not any available. I take supplements also to help with the numbness. It seems to have stopped or at least slowed down the progression of the neuropathy for me. R-ALA is one of the supplements I take also. You can read my story and find the links to how I found what has helped me here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
I retire from my second career of 21 years at the end of this year...but I'm not counting ☺ Good luck on your retirement! It's good to do your research.
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1 ReactionFYI -- from what I have heard from fellow PN-ers, R-Alpha Lipoic Acid is better (more effective) than just Alpha Lipoic Acid (without the R)
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1 ReactionMayo has never really given me any answers on the cause of my neuropathy as I've asked if it could be nerve damage from spinal fusion I had in 2002. I never had any issues with my feet prior to that time. They claim it isn't and I'd have to have another EMG (NOPE!!!) to diagnose for sure. I'd rather just play the guessing game if they haven't given me an answer after 3 prior EMG's, why would one more make any difference. BTW, my husband thinks I'm nuts because every night when I get home from work, I sweep our kitchen, entryway and dining room. I can feel everything, tiny bits of sand, salt and crumbs and they actually hurt. Guess only someone with neuropathy issues would understand. He could always save me the trouble and do it himself. (Now, THAT's FUNNY!!!). 😀
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1 ReactionDang, wish I'd known that before I ordered 4 bottles. Next time for sure I'll include the R!!
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1 Reaction@pjfrahm - This is the R-ALA that I purchase from Amazon...
https://www.amazon.com/R-Alpha-Lipoic-R-LIPOIC-count-STRENGTH/dp/B01M0QS5C7
You might want to check out the following discussion also as an alternative treatment for pain.
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
@johnbishop, Good deal!! Thank you!!
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1 ReactionI use CBD Isolate which I imported from China to Australia. It has zero THC but treats my identical symptoms very well. While not eliminated the symptoms of CIPN have been reduced my 90%. We are now running Government monitored clinical trials in Aus and I have joined that program.
Can you order this CBD Isolate from the US? If so, is there a website to order from? Is it taken orally or topically? Thanks.
That would be great ... how do I find the website. I take 20mg of CBD Isolate orally once per day
I use CBD Isolate at 20mg taken orally once per day. It has relieved me of 85-90% of painful symptoms of CIPN.