I have had peripheral neuropathy since 2016 after a cancer diagnosis and chemotherapy. I have tried and still take these medications without a lot of relief, pregabalin, duloxetine, oxicodone, topical RX. All of this causes fatigue. I've seen neurologist and pain clinics and they don't give me any other recommendations than what I'm doing. Always hopeful!
It is very frustrating to patiently seek to find a root cause of neuropathy. I reached a point where I seem to get very little hope from doctors and I get sucked by supplement peddlers. Is there such a thing as the root cause of this condition? Has anyone been held? Is this orthopedic, metabolic or both? It seems to be a field of endeavor that would easily render super-status to someone or a company who can effectively tackle this elusive nightmare.
Welcome @altucci, It definitely is frustrating and the best thing you can do to help yourself is learn as much as you can about the condition and what treatments are available that may help. My diagnosis is idiopathic small fiber peripheral neuropathy and my neurologist thought it might be hereditary.
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
I have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
Low thc and higher cbd percentages. From a licensed and regulated cannabis dispensary. Personal experience of myself, partner, and fellow medical cannabis patients. Period.
@bigjohnscho
How many members on connect have you seen post a cure or even significant improvements?
But even if they did it doesn't guarantee you will receive the same results. Personally, I never bought into all the supplement, devices or clinic hype.
I also have epilepsy, neither neuropathy or epilepsy have a cure. I’ve acceped my diagnosis and there limitations and adjusted my lifestyle accordingly. I've had neuropathy for almost 40 years. As the condition progressed my pain eventually stopped, replaced by numbness and other complications. Looking back, the pain wasn't so bad after all.
Sadly many people choose to chase rainbows and end up disappointed and perpetuating the booming fraud market, making crooks richer.
Epilepsy medication has proven to be the most helpful. I have taken these horrible meds for nearly 60 years and none have helped my neuropathy and for 45 years didn't help my seizures either. However, my brother takes 3600 mg of gabapentin and it helps him some.
ALA as I understand it is more likely to help people with diabetic neuropathy. Supposedly it has something to do with insulin but ALA studies for other sufferers has shown little to no effect. Although, ALA given intravenously has a higher success rate.
If you choose to to shop on Amazon for a cure, think about this.
Research showed that in March 2019, there were 1.8 million new unverified reviews, with an average of 99.6% of them being 5-star reviews. Most of these reviews are from people paid to write them.
I hope you don't go broke searching for the elusive cure researchers all over the world have yet to find.
If start supplements, Id ask my doctor and pharmacist about them first.
You might want to check out The Peripheral Neuropathy site for potential treatment possibilities. https://www.foundationforpn.org/
IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS.
I posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base) . Your post is so VERY spot on. I gave up trying to educate folks. I concluded many folks seek shortcuts and entitled based answers . Yes. I am being judgy. Ty for a fact based post.
I have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!
Thanks for that , it looks as if you’ve got a brilliant routine going. Unfortunately I take that much medication for all my other ailments I am very limited in what I can take due to interactions.
It’s still encouraging to hear from someone who’s doing OK. All the best John
Thank you for the information link and reply. I am beginning to research and talk to people with neuropathy to see what other proactive steps I can take. Medical doctors try to manage the pain with little knowledge of other alternatives.
I posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base) . Your post is so VERY spot on. I gave up trying to educate folks. I concluded many folks seek shortcuts and entitled based answers . Yes. I am being judgy. Ty for a fact based post.
One thing that I forgot to post . I have had 3 sets of PRP injections . My feet used to be cold and the feeling and color were not good. My color in my feet is so much better . The feeling and warmth of my feet is also better. I used to take Lyrica . It is an evil, evil medication . It gave me very dark thoughts and anxiety attacks. Wish you the best in your PN journey . KTB
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
Thank you so much for posting this I think everything you posted You must be some form of mind reader because I don't have one comment and that's ditto I suffer everyday and I'm getting ready to go to Mayo's on the 20th I'm going to have my possibly well it'll be worse than that but I'm going to have a fourth shoulder replacement and I broke my humerus bone over a year ago and I've had nothing done to it So my arm used to say in my referring surgeons words a mess! That being said I really believe that times minorothy and my feet out overshadows the pain in my shoulder and my shoulder looks like outside of an alien movie! Hopefully we can find some relief somewhere along the line cuz mine is horrible!
I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.
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Hi @ritasavage, Welcome to Connect. Being hopeful is a great asset to those of us with neuropathy. I'm sorry the medications haven't provided a lot of relief. The Foundation for Peripheral Neuropathy has a good list of complementary and alternative treatments that you might find helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf
Have you tried any non-medication treatments to see if they may provide some relief?
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1 ReactionWelcome @altucci, It definitely is frustrating and the best thing you can do to help yourself is learn as much as you can about the condition and what treatments are available that may help. My diagnosis is idiopathic small fiber peripheral neuropathy and my neurologist thought it might be hereditary.
Here are a few sites that have helped me...
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Matthew B. Jensen YouTube Channel (easy to understand videos): https://www.youtube.com/@MatthewBJensen
Do you mind sharing a little more about your diagnosis?
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3 ReactionsI have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!
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Like -
Helpful -
Hug
5 ReactionsLow thc and higher cbd percentages. From a licensed and regulated cannabis dispensary. Personal experience of myself, partner, and fellow medical cannabis patients. Period.
I posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base) . Your post is so VERY spot on. I gave up trying to educate folks. I concluded many folks seek shortcuts and entitled based answers . Yes. I am being judgy. Ty for a fact based post.
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Hug
1 ReactionThanks for that , it looks as if you’ve got a brilliant routine going. Unfortunately I take that much medication for all my other ailments I am very limited in what I can take due to interactions.
It’s still encouraging to hear from someone who’s doing OK. All the best John
Thank you for the information link and reply. I am beginning to research and talk to people with neuropathy to see what other proactive steps I can take. Medical doctors try to manage the pain with little knowledge of other alternatives.
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Helpful -
Hug
2 ReactionsOne thing that I forgot to post . I have had 3 sets of PRP injections . My feet used to be cold and the feeling and color were not good. My color in my feet is so much better . The feeling and warmth of my feet is also better. I used to take Lyrica . It is an evil, evil medication . It gave me very dark thoughts and anxiety attacks. Wish you the best in your PN journey . KTB
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Helpful -
Hug
4 ReactionsThank you so much for posting this I think everything you posted You must be some form of mind reader because I don't have one comment and that's ditto I suffer everyday and I'm getting ready to go to Mayo's on the 20th I'm going to have my possibly well it'll be worse than that but I'm going to have a fourth shoulder replacement and I broke my humerus bone over a year ago and I've had nothing done to it So my arm used to say in my referring surgeons words a mess! That being said I really believe that times minorothy and my feet out overshadows the pain in my shoulder and my shoulder looks like outside of an alien movie! Hopefully we can find some relief somewhere along the line cuz mine is horrible!
I am so glad you asked this and want to see all of the responses
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