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.

Mentor
John, Volunteer Mentor | @johnbishop | May 16 8:26pm
In reply to @joanland "Within the last month (or so), on one of the peripheral neuropathy forums, someone posted that..." + (show)
@joanland

Within the last month (or so), on one of the peripheral neuropathy forums, someone posted that "statins cause neuropathy." And to take Repatha instead of a statin. Does anyone know of any research to back this up? I'd like to know more about the relationship between statins and neuropathy. Thanks to all.

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Here’s a search link that you can use to find discussions by typing neuropathy and statins - https://connect.mayoclinic.org/search/

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1 reply
joanland | @joanland | May 16 10:34pm
In reply to @johnbishop "Here’s a search link that you can use to find discussions by typing neuropathy and statins..." + (show)
@johnbishop

Here’s a search link that you can use to find discussions by typing neuropathy and statins - https://connect.mayoclinic.org/search/

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Thank you very much. That link plus a general search for neuropathy and statins brought up a good research review paper.

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elena_l | @elenal | May 17 6:09pm
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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I am also an athlete. Hoka shoes made a difference for me, then Oofos. You can also have an MRI and ultrasound done on your feet just to rule out some structural causes.

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harryrcampbell37 | @harryrcampbell37 | May 23 11:04am

I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for over 20 years. It's more bothersome when attemoting sleep. 100 MG Neurontin doesn't work continually for me . I am now getting 9 hours sleep with Gamma Aminobutyric acid...over the counter GABA.
I'm taking 300 MG prior to bedtime. Amazon offers it in 100, 200, 300, 500 and 1,000 MG dosages. WebMD says no long range safety studies have been performed on it.
Good luck as I realize its relief will vary greatly from person to person.

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3 replies
mlee5309 | @mlee5309 | May 23 3:11pm
In reply to @harryrcampbell37 "I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for..." + (show)
@harryrcampbell37

I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for over 20 years. It's more bothersome when attemoting sleep. 100 MG Neurontin doesn't work continually for me . I am now getting 9 hours sleep with Gamma Aminobutyric acid...over the counter GABA.
I'm taking 300 MG prior to bedtime. Amazon offers it in 100, 200, 300, 500 and 1,000 MG dosages. WebMD says no long range safety studies have been performed on it.
Good luck as I realize its relief will vary greatly from person to person.

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I’m desperate enough to take anything regardless of studies if there is a chance at pain relief. Does it just enable you to sleep or does it actually reduce pain? Thc helps me to sleep but it doesn’t touch the pain it just somehow allows me to ignore it but only at night. Thc during the day does nothing for me. My neuropathy was from vitamin deficiencies. Thx for any response.

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1 reply
aaron_az | @aaroncush | May 23 3:33pm
In reply to @harryrcampbell37 "I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for..." + (show)
@harryrcampbell37

I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for over 20 years. It's more bothersome when attemoting sleep. 100 MG Neurontin doesn't work continually for me . I am now getting 9 hours sleep with Gamma Aminobutyric acid...over the counter GABA.
I'm taking 300 MG prior to bedtime. Amazon offers it in 100, 200, 300, 500 and 1,000 MG dosages. WebMD says no long range safety studies have been performed on it.
Good luck as I realize its relief will vary greatly from person to person.

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Thanks! I will definitely give it a try. At this point, adding another supplement to my obnoxious list of them doesn’t trouble me. Sleep has been getting worse again so keeping my fingers crossed it will help, even a little bit. What brand do you use out of curiosity?

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andyjustin | @andyjustin | May 23 6:46pm

Oh, there’s a chiropractic group called in Nate and they work with peripheral neuropathy and they have some amazing supplements The company that makes them as blueprint. I have autonomic neuropathy and it’s no fun. I’m doing my best staying healthy lotta exercise lotta stretching. I truly believe the supplements do help

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andyjustin | @andyjustin | May 23 6:52pm

There has been research I’ve read about that says increased testosterone helps with Mylin repair. I do a lot of reading and in reality once you have neuropathy, you have neuropathy if you have autonomic neuropathy, you’re pretty much screwed just be vigilant and taking care of your health i.e. exercise, stretching, good diet mega supplements, and I hope that someday they’ll have a better handle on how to deal with this, I just hope I stick around up to find out if I wasn’t on gabapentin I basically would be a sniffling fool at this point my doses started at 900 and now I’m up to pretty close to 2000 but even with the 2000 sometime the pain just burns through and I’ve experienced pretty much every symptom in the book they come in they go, but they never leave it inside and having them just deciding who they’re gonna who and when they’re gonna pick at you inside anyway that’s my take love to your comments

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duquer | @duquer | May 24 7:30am
In reply to @harryrcampbell37 "I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for..." + (show)
@harryrcampbell37

I've had neuropathy pains (legs first and then hands) that feel like a knife cutting for over 20 years. It's more bothersome when attemoting sleep. 100 MG Neurontin doesn't work continually for me . I am now getting 9 hours sleep with Gamma Aminobutyric acid...over the counter GABA.
I'm taking 300 MG prior to bedtime. Amazon offers it in 100, 200, 300, 500 and 1,000 MG dosages. WebMD says no long range safety studies have been performed on it.
Good luck as I realize its relief will vary greatly from person to person.

Jump to this post

Here are two links that I have found to be very positive in treating neuropathy.
https://connect.mayoclinic.org/comment/645606/
.
https://www.rstsanexas.com/patient-resources/
Would like to hear from others, who have had a positive experience with the Sanexas treatment.

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andyjustin | @andyjustin | May 24 1:11pm

I’m not sure what The Cinemax is Treatment is but is it the Treatment where they actually put an electronic device in your body? I met someone who had that done I’ve done lots of research and here’s what I have found first of all. Testosterone is good for you. It works well with your damage. Mylin or so, I’ve read and heard based on some studies. There’s also some interesting stuff that’s going on in France with the combination of different medicines and back to the testosterone. I’ve been taking a pretty high dose of it not like the bodybuilder type but a high dose and I believe it’s helpful, I exercise a lot. I stretch a lot diet. Absolutely no drinking smoked tons of pot. If you don’t smoke, you should try it really neuropathic shoots through the gabapentin. Stay positive.

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