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.

darnocoll | @darnocoll | May 13 10:34pm

I've been using St. John's wort oil on my feet and the itching and burning go away. I apply it at night and the itching stops in a matter of minutes.

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2 replies
bigjohnscho | @bigjohnscho | May 14 6:06am
In reply to @altucci "John, thanks for your response. As I said earlier, I have not given up hope in..." + (show)
@altucci

John, thanks for your response. As I said earlier, I have not given up hope in finding the root cause. However, that doesn't mean I haven't tried to be a healthier person. I research this condition on a regular basis. It seems the cause is either orthopedic or metabolic. My condition, I believe, falls into both categories. It is possible that my car accident resulted in a vulnerability not present before the accident. The orthopedist I saw said the MRI showed an impingement in my sciatica. I do have problems with my lower back when I'm lifting, etc. I have also had blood work that shows marginal for some tests. Your input would be helpful to me. Is it worthwhile to continue to seek out the root cause, or should one resign himself to the condition and simply do the best to live with it?

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Like you l am driven to finding the root cause and a possible cure but I am becoming convinced that my efforts are doomed to failure. The doctor I’ve seen has no answers and I have spent hours on the internet and spent a lot of money on so called cures only to be disappointed. I am pretty sure that at present no one has the answer but even knowing that I will keep on searching and hoping. I only wish that there was some kind of watchdog on the internet that would make advertisers offering cures validate their claims before giving false hope to desperate and vulnerable sufferers.

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Mentor
John, Volunteer Mentor | @johnbishop | May 14 6:52am
In reply to @sueinmn "Hi - & @johnbishop - I saw my primary Friday and was talking about the increased..." + (show)
@sueinmn

Hi - & @johnbishop - I saw my primary Friday and was talking about the increased numbness & tingling I am experiencing in one side - she raised the possibility of neuropathy - will be seeing my chiro, ortho and pain docs later this month & see if they concur...in spite of years on Connect it never occurred to me - DUH.
Stay tuned for updates.
Sue

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Hoping you find some answers and relief later this month when you see your care team @sueinmn.

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Mentor
John, Volunteer Mentor | @johnbishop | May 14 7:06am
In reply to @altucci "John, thanks for your response. As I said earlier, I have not given up hope in..." + (show)
@altucci

John, thanks for your response. As I said earlier, I have not given up hope in finding the root cause. However, that doesn't mean I haven't tried to be a healthier person. I research this condition on a regular basis. It seems the cause is either orthopedic or metabolic. My condition, I believe, falls into both categories. It is possible that my car accident resulted in a vulnerability not present before the accident. The orthopedist I saw said the MRI showed an impingement in my sciatica. I do have problems with my lower back when I'm lifting, etc. I have also had blood work that shows marginal for some tests. Your input would be helpful to me. Is it worthwhile to continue to seek out the root cause, or should one resign himself to the condition and simply do the best to live with it?

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I don't really like to resign myself to having a condition as long as I can keep learning more about it and what can help provide some relief. Not sure if you have used it but one of my favorite research tools for finding medical research is Google Scholar (https://scholar.google.com/). I like that it lets you sort the search results to find the latest articles and research papers. I think it's always good to have hope but there is some common ground between hope resigning yourself to a condition. I think it helps to have a positive attitude.

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Mentor
John, Volunteer Mentor | @johnbishop | May 14 7:21am
In reply to @darnocoll "I've been using St. John's wort oil on my feet and the itching and burning go..." + (show)
@darnocoll

I've been using St. John's wort oil on my feet and the itching and burning go away. I apply it at night and the itching stops in a matter of minutes.

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Welcome @darnocoll, Thanks for sharing your experience with what helps you. Have you been diagnosed with neuropathy?

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cb3 | @cb3 | May 14 3:01pm
In reply to @aaroncush "I think the biggest problem is neuropathy is a symptom of something else and not a..." + (show)
@aaroncush

I think the biggest problem is neuropathy is a symptom of something else and not a disease in and of itself. What works for one person won’t necessarily work for another. My symptoms are caused by inflammation and I seme-successfully controlled the pain with supplements that targeted inflammation, then when that was no longer enough added LDN to the supplements and got another 10 months. Now that combination is not enough (either my body has grown a tolerance to what I am taking or it is progressing) and I am back at the search for relief.

So if you want to try something, ask your doctor about LDN - it worked wonders for me for about a year, and did nothing for my father with type-2 diabetic neuropathy, so your mileage may vary.

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Howdy. I want to thank you for bringing Low Dose Naltrexone (LDN) to my attention. I have chronic pain, non-diabetic, caused by treatment for cancer ten years ago. It looks like the LDN dosage is low, 1 mg - 1.5 mg. I am going to talk to my primary care about this.

Did LDN help you sleep better? Did you combine it with physical therapy?

Thanks again for bringing up this topic. Best, CB

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1 reply
aaron_az | @aaroncush | May 14 3:22pm
In reply to @cb3 "Howdy. I want to thank you for bringing Low Dose Naltrexone (LDN) to my attention. I..." + (show)
@cb3

Howdy. I want to thank you for bringing Low Dose Naltrexone (LDN) to my attention. I have chronic pain, non-diabetic, caused by treatment for cancer ten years ago. It looks like the LDN dosage is low, 1 mg - 1.5 mg. I am going to talk to my primary care about this.

Did LDN help you sleep better? Did you combine it with physical therapy?

Thanks again for bringing up this topic. Best, CB

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My LDN dosage wound up being 4.5mg and I had to take it at lunchtime (or earlier) to not affect my sleep (vivid dreams). From a pain reduction standpoint, yes it helped with sleep.

No PT involved as mine is purely sensory related. I do combine it with a metric ton of supplements as LDN was 70-75% effective and was able to get to 95-99% with supplements that target inflammation.

Of course now it is probably 35-40% effective and supplements providing another 10-15% which either means I have grown used to the dose or my condition has worsened. My guess is the latter.

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1 reply
cb3 | @cb3 | May 14 3:42pm
In reply to @aaroncush "My LDN dosage wound up being 4.5mg and I had to take it at lunchtime (or..." + (show)
@aaroncush

My LDN dosage wound up being 4.5mg and I had to take it at lunchtime (or earlier) to not affect my sleep (vivid dreams). From a pain reduction standpoint, yes it helped with sleep.

No PT involved as mine is purely sensory related. I do combine it with a metric ton of supplements as LDN was 70-75% effective and was able to get to 95-99% with supplements that target inflammation.

Of course now it is probably 35-40% effective and supplements providing another 10-15% which either means I have grown used to the dose or my condition has worsened. My guess is the latter.

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Humph. Inflammation seems to be the nasty culprit. My doctor suggested I go non-dairy and plant-based in my diet, and I have. It's only been a couple of months so I don't know if the inflammation in my body is going away. I kind of doubt it. Today I had a really good visit with my PT. She put me through a lot of different stretches which helped me walk through the grocery store with little or no pain. To me, it's almost celebratory because I usually have horrible pain walking in stores: or just plain walking period.

But I am going to bring up LDN to my doctor. How long did it take for you to notice relief from taking LDN?

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1 reply
aaron_az | @aaroncush | May 14 4:19pm
In reply to @cb3 "Humph. Inflammation seems to be the nasty culprit. My doctor suggested I go non-dairy and plant-based..." + (show)
@cb3

Humph. Inflammation seems to be the nasty culprit. My doctor suggested I go non-dairy and plant-based in my diet, and I have. It's only been a couple of months so I don't know if the inflammation in my body is going away. I kind of doubt it. Today I had a really good visit with my PT. She put me through a lot of different stretches which helped me walk through the grocery store with little or no pain. To me, it's almost celebratory because I usually have horrible pain walking in stores: or just plain walking period.

But I am going to bring up LDN to my doctor. How long did it take for you to notice relief from taking LDN?

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My doctor prescribed 1.5mg capsules so I started with 1.5 and gave it about a week. Then moved to 3.0 and gave that a week. Then moved to 4.5 and started to feel relief on the third day.

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1 reply
cb3 | @cb3 | May 14 4:25pm
In reply to @darnocoll "I've been using St. John's wort oil on my feet and the itching and burning go..." + (show)
@darnocoll

I've been using St. John's wort oil on my feet and the itching and burning go away. I apply it at night and the itching stops in a matter of minutes.

Jump to this post

Hi. How does this product work with painful non-diabetic neuropathy? My feet don't itch but there is slight burning sometimes. And sometimes my feet feel puffy along the pads of the metatarsals (right foot mostly). I feel pain in varying degrees. If this product works, I may try it. I would love to have my pain go away in a matter of minutes. Thanks for bringing it up. Best CB

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