1. < Neuropathy

Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

kathyv66 | @kathyv66 | Nov 8 9:16am
In reply to @cecelia19 "Thank you for your kind and empathetic reply. It was comforting. There are so many people..." + (show)
@cecelia19

Thank you for your kind and empathetic reply. It was comforting. There are so many people who have PN that I don’t understand why there isn’t more attention devoted to it. There is a plethora of OTC remedies - which often fall short - so I would think that some company would see the lucrative value in developing a cure or more effective treatment. I was recently at a major medical center in my state, and the only option I was given was doubling the dose of my Gabapentin. Even on my current dose I am having trouble tolerating the side effects; however, I need better pain control and was hoping that at the very least, they could add something to my current treatment regimen rather than just more of the same. I showed him the four pages of alternative treatments from the PN Foundation site, and after glancing at it briefly, he said that none of it worked. Imagine my disappointment after putting so many hopes on this appointment that I waited such a long time for. Thank God for all of you.

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I experienced relief from the pain with accupuncture... and I have seen several people in this forum report similar success. For me, I did it regularly for months. It did not help with numbness and the acupuncturist did say up front that he had success with pain in other cases but not to expect relief from the numbness

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stefanie4710 | @stefanie4710 | Nov 8 10:23am
In reply to @johnbishop "Welcome @stefanie4710, I have found it easier to ignore those types of people. It definitely helps..." + (show)
@johnbishop

Welcome @stefanie4710, I have found it easier to ignore those types of people. It definitely helps when you have a circle of friends that empathizes and understands or can relate. I don't wish any of my health problems on anyone else. One of the best lines I have heard about neuropathy came from an 80 year old neurologist at a meeting of the now gone Minnesota Neuropathy Association. He said if you live long enough you will get neuropathy because nerves eventually die like any other cells in our body - paraphrased from my old man memory 🙂.

What helps you get through the day?

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Hi John,
Keeping busy is the only thing that distracts me. How about you?
Stef

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 8 10:51am
In reply to @stefanie4710 "Hi John, Keeping busy is the only thing that distracts me. How about you? Stef" + (show)
@stefanie4710

Hi John,
Keeping busy is the only thing that distracts me. How about you?
Stef

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Fortunately I don't have the awful pain that can come with neuropathy but just numbness and tingling. Keeping busy is a great distraction from the numbness and helps me also.

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annoranna | @annoranna | Nov 8 11:31am

I have chronic pain with neuropathy and no opioid helps. Looking for something that might help with my pain.

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 8 12:10pm
In reply to @annoranna "I have chronic pain with neuropathy and no opioid helps. Looking for something that might help..." + (show)
@annoranna

I have chronic pain with neuropathy and no opioid helps. Looking for something that might help with my pain.

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If you haven't already seen this list, the Foundation for Peripheral Neuropathy has a good list of treatments - https://www.foundationforpn.org/treatments/.

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stefanie4710 | @stefanie4710 | Nov 8 7:53pm

Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it won't kill me 🙂
I took one of the two suggested pills. Nothing happened to me thus far...
Thanks. I'm sorry for your pain/numbness situation. Stef

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1 reply
stefanie4710 | @stefanie4710 | Nov 8 7:54pm

Hi Again, I don't know if I broke some rule mentioning PEA supplement. I'm new here. I am not a seller of this supplement in any way. Stef

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 8 8:10pm
In reply to @stefanie4710 "Hi Again, I don't know if I broke some rule mentioning PEA supplement. I'm new here...." + (show)
@stefanie4710

Hi Again, I don't know if I broke some rule mentioning PEA supplement. I'm new here. I am not a seller of this supplement in any way. Stef

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Hi Stef, You didn't break any rules 🙂. There is actually a discussion on the PEA supplement.
-- Palmitoylethanolamide (PEA): Anyone had success?
https://connect.mayoclinic.org/discussion/pea-success/
If you do a search there are quite a few comments from members. Here's a list that you might want to look through - https://connect.mayoclinic.org/search/?search=PEA%20supplement.

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wolfie1 | @wolfie1 | Nov 9 11:14pm
In reply to @stefanie4710 "Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it..." + (show)
@stefanie4710

Hi, I am desperate. So I researched Palmitoylethanolamide (PEA) and articles lead me to believe it won't kill me 🙂
I took one of the two suggested pills. Nothing happened to me thus far...
Thanks. I'm sorry for your pain/numbness situation. Stef

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Hi Stef. I too am desperate…it is definitely affecting my quality of life. Much of the time I can manage the pain but sometimes it’s too much. I did do dry needling for about a year but that wore off. Since the beginning if it’s too much I will eat a gummie. I keep them by my bedside for when I am woken up by it. It’s the best remedy I have found. Good luck with your search. Know that we are all understanding and want to find a cure!

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stefanie4710 | @stefanie4710 | Nov 10 9:01am

Hi John, Thanks for the information. I will look it up.
@wolfie1, Hang in there. Whenever it is happening, know someone - many someones - are also feeling pain.
Thanks, Guys, Stef

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