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.

kbirchem | @kbirchem | May 5 4:46am
In reply to @colleenyoung "Hi @daves2, I moved your question about the foot massager to this existing discussion - Neuropathy:..." + (show)
@colleenyoung

Hi @daves2,
I moved your question about the foot massager to this existing discussion
- Neuropathy: What works and what are scams?
https://connect.mayoclinic.org/discussion/what-works-and-what-are-scams/

We used to have a discussion dedicated to this foot massager that I had to removed because it attracted spammers and fake reviews trying to increase attention about the product. That screams scam.

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I bought one . It did not work right from the start . I threw it away the same day that I got it . KTB

REPLY
1 reply
jgnaip2 | @jgnaip2 | May 5 7:30am
In reply to @kbirchem "I bought one . It did not work right from the start . I threw it..." + (show)
@kbirchem

I bought one . It did not work right from the start . I threw it away the same day that I got it . KTB

Jump to this post

Good to know

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bowersra | @bowersra | May 5 7:37am

I have had a skin punch biopsy showed small fiber neuropathy
I am new to talking about this. But have had neuropathy for at least 12 years.
Doctor does not understand what we go through

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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 5 8:27am

Hello @jgnaip2 and @bowersra, Welcome to Connect. Happy to see that you found Connect and hoping you can learn more about your neuropathy and possible treatments that provide relief and a better quality of life by learning what other members have shared. It is definitely a plus to do your own research and learn as much as you can about your neuropathy condition and treatments that are available.

There are many discussions on neuropathy and what helps where members have asked questions and shared experiences. Here is a link to the discussions and comments from members - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

There are also some good information and resources on the Foundation for Peripheral Neuropathy that you might find helpful - https://www.foundationforpn.org/living-well/.

I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/comment/310341/. @jgnaip2 and @bowersra, if you feel comfortable sharing, what are the symptoms from your neuropathy that are the most troublesome?

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1 reply
harley22 | @harley22 | May 5 12:03pm
In reply to @bowersra "I have had a skin punch biopsy showed small fiber neuropathy I am new to talking..." + (show)
@bowersra

I have had a skin punch biopsy showed small fiber neuropathy
I am new to talking about this. But have had neuropathy for at least 12 years.
Doctor does not understand what we go through

Jump to this post

I agree, they don’t get it.

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bowersra | @bowersra | May 5 12:36pm
In reply to @johnbishop "Hello @jgnaip2 and @bowersra, Welcome to Connect. Happy to see that you found Connect and hoping..." + (show)
@johnbishop

Hello @jgnaip2 and @bowersra, Welcome to Connect. Happy to see that you found Connect and hoping you can learn more about your neuropathy and possible treatments that provide relief and a better quality of life by learning what other members have shared. It is definitely a plus to do your own research and learn as much as you can about your neuropathy condition and treatments that are available.

There are many discussions on neuropathy and what helps where members have asked questions and shared experiences. Here is a link to the discussions and comments from members - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

There are also some good information and resources on the Foundation for Peripheral Neuropathy that you might find helpful - https://www.foundationforpn.org/living-well/.

I shared my neuropathy journey in another discussion here along with other members - https://connect.mayoclinic.org/comment/310341/. @jgnaip2 and @bowersra, if you feel comfortable sharing, what are the symptoms from your neuropathy that are the most troublesome?

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Mine I believe started in my toes..
For many years work long hours standing and with poor shoes…
But don’t think rinks got what I would say out of control till I had surgery on my feet for ganglion cysts in both ankles.

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johnnyguitar | @johnnyguitar | May 5 6:23pm

15 years of idiopathic foot neuropathy, diagnosed has progress from small nerve to large nerve in calves. Everyone's body is different but for me switching from 10 years of Gabapentin to pregablin has been a God send for severe fatigue. Alpha Lyphoric Acid has helped in addition. Prayer really helps a lot. God Bless 🙏

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paulbse | @paulbse | May 6 4:01am
In reply to @bunky44 "I can relate to most of these posts....PN is a life comfort stealer. It looks like..." + (show)
@bunky44

I can relate to most of these posts....PN is a life comfort stealer. It looks like there are so many reasons for this malady..some from surgeries, some from illnesses..or injuries. I'm looking for relief from whatever the cause could be..and not with more medications. The different kind of 'socks' looks to be helpful for some. I also feel that by using different non-invasive types of therapy whether it be acupuncture, inserts, better shoes....massage...cleaner diet....that some of these have worked wonders for so many that now suffer, that maybe it's time to try something different in our pursuit of comfort and relief from at times, the intractable , searing pains of PN. I recently talked with three women in a waiting room at my local hospital..when I noticed that they were all wearing Hoka shoes. They swore by them!! I am now dealing with pins and needles as well as extreme heel pain that causes me to walk on my toes..can't bear to put my heel down as the pain is too intense....and I'm an athlete!....not exercising..walking on my treadmill and outside is not an easy life sentence for me..so I'm always seeking out ways to lighten my load here.
Heat doesn't help me...but ice seems too..at least getting a bit numb is a different feeling then having to be conscious of my feet at every moment of the day. I also massage my feet a lot....getting more of a blood supply going...also taking supplements that aid in nerve damage, which have helped I feel. I would love to have anyone who's tried different walking shoes that have benefited their lives..please post for us!! What's making a difference??? Not satisfied with a "there's nothing that can be done" attitude! Bless you all!!!

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bunky44: I experienced a condition very similar to what you have described and I finally had to ask to have my foot X-rayed with the primary focus on the heel. Well, lo and behold the issue was resolved. Although I was not particularly happy about it, I had two very large bone spurs; one at the bottom of my heel and another on the back of my heel. I already had inserts in my shoes but I switched them out for a type that offered better cushioning and, within a short time, the pain went away. Have your feet X-rayed, it will not hurt.

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pdrago1955 | @pdrago1955 | May 6 10:44am
In reply to @bowersra "I have had a skin punch biopsy showed small fiber neuropathy I am new to talking..." + (show)
@bowersra

I have had a skin punch biopsy showed small fiber neuropathy
I am new to talking about this. But have had neuropathy for at least 12 years.
Doctor does not understand what we go through

Jump to this post

Hello....I am currently taking treatments from " Embrace Life "in Ankeny, Iowa. Dr. Drew is a Chiropractor that specializes in Neuropathy and he uses Nutritional Supplements to heal from the inside out.
There are different methods of using
electrodes and leg wraps. I have gone through 3 months of these
regiments and am now walking on my own...no cane or walker. I will start a maintenance program to keep the healing process going.

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1 reply
bowersra | @bowersra | May 6 10:58am
In reply to @pdrago1955 "Hello....I am currently taking treatments from " Embrace Life "in Ankeny, Iowa. Dr. Drew is a..." + (show)
@pdrago1955

Hello....I am currently taking treatments from " Embrace Life "in Ankeny, Iowa. Dr. Drew is a Chiropractor that specializes in Neuropathy and he uses Nutritional Supplements to heal from the inside out.
There are different methods of using
electrodes and leg wraps. I have gone through 3 months of these
regiments and am now walking on my own...no cane or walker. I will start a maintenance program to keep the healing process going.

Jump to this post

I live near a great place to fine the nutritional supplements, as it has help with my fatigue, I see no change in the overall neuropathy, not saying other may find help I did not….
What I need is a doctor who will find out what I have, if there a cause and if it is all SFN, or damage from the SFN, or other things..
I get tried of these doctor wanting us to go to pain management with out knowing all…
I know that there is more going on with my feet and legs, and don’t want to take things that put you to sleep…
And believe me many of the nutrients, pills and injections..can do more harm than good…
I have learned even with vitamin you can do more harm thawing to much or the ones that should not be taking together…
I need a doctor who listen…understands

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