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.

stefanie4710 | @stefanie4710 | Nov 7 7:29pm
In reply to @cecelia19 "I can empathize with you and if it wasn’t for this community I don’t know what..." + (show)
@cecelia19

I can empathize with you and if it wasn’t for this community I don’t know what I would do. I confided in my best friend that I was profoundly depressed because of my PN pain and some evenings I will cry uncontrollably. She said that wasn’t normal to feel this depressed about my condition because “It’s nothing life threatening”, says the person who has never had PN. She also berated me for trying a topical THC/CBD product whom my doctors have had no trouble with me using. I feel like I’m on this island, adrift from the rest of humanity. The medical facility I went to recently had me set to meet virtually with a pain psychologist and they called a couple of days ago to cancel my appointment on the 19th of this month to three weeks later so addressing my mental health will have to wait a while longer. Your last two sentences brought me to tears. I pray every day not just for myself but for all of us that they can find a cure or universally effective treatment, very soon. I am so thankful for this forum where we can share ideas and our feelings with those who walk this painful road which others cannot understand.

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It is easy for those living in their tiny bubble of not having lived with pain to tell us that we are over-reacting. Or it's all in our head - no it's in my feet and legs! It is only a matter of time until life slaps them upside the head as it laughs and laughs. Then their minute will feel like a month....

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NJ Ed | @njed | Nov 8 6:04am

@antonintampfl2009 - Your comment above relating to dedicating time and money for a cure for those of us with PN because it is not life threatening ... you are 100% correct. And, for several years I've thought the same way and still do. Let's go back to 2020, we all remember covid and the loss of lives. Within a year, a vaccine was available by several pharmaceutical companies. Yet, with PN, most people think....oh, isn't that just numbness in the feet? If they only knew, it goes well beyond that. We have around 25 million people with some degree of PN. The general perception is people can live with that and fortunately, we do. Some degree of attention is given to PN when people like Eric Clapton announce he has PN. In my opinion, big pharm companies won't throw money into research for PN...after all, it's just numbness in the feet. And, even if they could develop a magic pill, would insurance companies be willing to pay the price for this newly found med? So, for now, all we can do is slow progression, take pain meds, etc. until pharm companies realize that perhaps there is a market (a/k/a make money) to develop something for those suffering from PN. For now, fingers crossed! Ed

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 8 7:30am
In reply to @stefanie4710 "It is easy for those living in their tiny bubble of not having lived with pain..." + (show)
@stefanie4710

It is easy for those living in their tiny bubble of not having lived with pain to tell us that we are over-reacting. Or it's all in our head - no it's in my feet and legs! It is only a matter of time until life slaps them upside the head as it laughs and laughs. Then their minute will feel like a month....

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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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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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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 | 6 days ago

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 | 6 days ago
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 | 6 days ago

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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stefanie4710 | @stefanie4710 | 6 days ago

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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