1. < Neuropathy

Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2, 2024

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.

ann78 | @ann78 | 3 days ago
In reply to @harley22 "I’m in the same situation as you. My neuropathy started when I was 60, which was..." + (show)
@harley22

I’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.

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Beware of scams, usually by chiropractors that charge you upfront over $8,000 for treatment that made my pain worse.

REPLY
rich12019 | @rich12019 | 3 days ago
In reply to @ray666 "Hi, rich12019 (@rich12019) I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance...." + (show)
@ray666

Hi, rich12019 (@rich12019)

I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂

I wish you the very best of the New Year!
Ray (@ray666)

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I drink a high protein shake each morning with my Dr Mercola’s multivitamin.
Nothing works and that was my prognosis 6 yrs ago…that nothing works
-Rich

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sh0rtie | @sh0rtie | 1 day ago

@sh0rtie I have been on the same quest like the rest of you. When you talk to the doctor, they just up front tell you there is nothing that can be done. I can't stand that numb feeling that creeps up and down my legs and feet at will SO this is what I have done and I have to say it has helped a little. First, I bought myself some reflexology shoes ( I call them torture shoes) from Amazon. I wear them with socks for 30 minutes a day in the morning. Then I bought some barefoot shoes to wear in the house because it hurts my ankles to go without shoes these days. Both seem to help if I do it regularly. I also have a pair of the muscle massage shoes that I got from Amazon. I do that about 3 times a week. My primary care doctor told me his wife has neuropathy and takes Alpha Lipoic Acid. I got some and take 600 mg every day. I can honestly say what has given me the most help is the Alpha Lipoic Acid. I don't feel it creeping up my legs anymore. Sometimes I almost think I have some feeling in a couple of toes. I don't have ongoing pain but at night I am fighting the itching in my toes. It is hard to sleep. I wish I had better news but I am excited to have found a little relief. Laura Henderson

REPLY
sh0rtie | @sh0rtie | 1 day ago
In reply to @valyruss "It depends on everyone's situation..I was diagnosed with SFN three years ago which aggravated to the..." + (show)
@valyruss

It depends on everyone's situation..I was diagnosed with SFN three years ago which aggravated to the point of having difficulty walking...Finally I found a clinic offering Sanexas treatment and after three month along with some other life changes- I'm healed 70%...
Now I'm looking for a devise as a maintenance only.

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@Curi0us I don't know what Sanexas treatment is. Would you mind explaining? Laura Henderson

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1 reply
valyruss | @valyruss | 1 day ago
In reply to @sh0rtie "@Curi0us I don't know what Sanexas treatment is. Would you mind explaining? Laura Henderson" + (show)
@sh0rtie

@Curi0us I don't know what Sanexas treatment is. Would you mind explaining? Laura Henderson

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https://www.rstsanexas.com/
It's a NeoGen treatment for neuropathy using electrical pulse and oscillators plus B12 injection straight in feet...
Most ins. don't pay for it...
click on them website and find out a local providers in your area doing this treatment...
The local provider will do a thoroughly evaluation to see if you are a good candidate...
I got three month-twice/week treatment plus some other lifestyle adjustments and I'm 70% healed with my SFN.
Good thing-my local provider gave me a very good price to continue as a maintenance only for twice/month...

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1 reply
felicelinda | @felicelinda | 1 day ago

Hi Friends,
My husband has had painful burning neuropathy in his feet for the past two years. I have bought so many lotions, pain pads, etc. and nothing really worked.I did buy him barefoot Lorax shoes by Hike. He said “don’t waste your money.”. Well, he now says they are the best shoes and his pain level has significantly gone down. It didn’t happen all at once, but after a few weeks of wearing them, his pain level DID go down. He also started taking pregablin (the generic form of Lyrica)…two 50 mg pills three times a day. Both of these changes have helped him so much! Everyone is different, but it has been a lifesaver for my husband.

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1 reply
valyruss | @valyruss | 1 day ago
In reply to @felicelinda "Hi Friends, My husband has had painful burning neuropathy in his feet for the past two..." + (show)
@felicelinda

Hi Friends,
My husband has had painful burning neuropathy in his feet for the past two years. I have bought so many lotions, pain pads, etc. and nothing really worked.I did buy him barefoot Lorax shoes by Hike. He said “don’t waste your money.”. Well, he now says they are the best shoes and his pain level has significantly gone down. It didn’t happen all at once, but after a few weeks of wearing them, his pain level DID go down. He also started taking pregablin (the generic form of Lyrica)…two 50 mg pills three times a day. Both of these changes have helped him so much! Everyone is different, but it has been a lifesaver for my husband.

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Glad your husband feel better with special shoes and Gababentin....
Unfortunately, the relief will not last long,,,unless properly treated neuropathy becomes worse and worse till prevent people even from walking...
First thing first you have to determine what is causing this neuropathy...a neurologist and a podiatrist is a must to see...they will check nerves conduction, arteries and venous blood flow, skin biopsy for small fiber neuropathy ( SFN) etc...
I got SFN three years ago, being on Gababentin and bunch of helpful vitamins to no avail....I've got to the point when walking became difficult. Finally I ended up with this clinic doing Sanexas treatment together with B12 shots straight in my feet along with some other life style changes..Sure enough, after three month treatment twice a week I got 70% healed, off Gababentin and walking with ease....I'm continuing to do Sanexas just for maintenance twice a month...Hope this help.

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1 reply
dawndl | @dawndl | 23 hours ago
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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Vionics!

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blessedsista24 | @blessedsista24 | 23 hours ago
In reply to @ray666 "Hi, rich12019 (@rich12019) I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance...." + (show)
@ray666

Hi, rich12019 (@rich12019)

I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂

I wish you the very best of the New Year!
Ray (@ray666)

Jump to this post

Unbalanced walking with PN Ugh.
So I'm not the only one with it..
I've tried converse shoe's and it is OK.

REPLY
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