1. < Neuropathy

Supplements - What helps nerve pain and/or neuropathy?

Posted by newzbug @newzbug, Nov 15, 2019

I was diagnosed earlier this year with "Sensorimotor Peripheral Neuropathy" over my whole body, though I am not yet showing symptoms everywhere. I do have numbness in all my toes, feet, a large section of my upper right thigh, large section of the side of my left calf, occasional ... numbness in my hands in the middle of the night. Anyway, my neurologist did suggest Alpha Lipoic Acid (otc supplement) to help with the neuropathy. She said that although studies suggest people who also have diabetes have had some success with taking this (I don't have diabetes), she said I might get some help from it. So, yep, it's been about 8 months I have been taking 600mg/daily and it seems to have helped lessen my feelings of 'burning feet'. I am going to increase my dosage to 800mg when I finish my current bottle. I use a brand that has no additives (colors, flavors, etc). Brand: Best Vitamins. Though I don't have diabetes, and it may be helpful only because I believe in it, that is something.

My husband periodically gives me massage on my ankles, tops of my feet and calves which seems to offer some help with the emptiness feeling on that lower part of my body. I am doing some reading research on any other supplements which could be of help. I try not to think about neuropathy too much, because I have since been diagnosed with Pulmonary Hypertension and CTEPH. I stick to reputable sites like the Mayo Clinic and PubMed as well as those of us who have personal experiences. Thanks to everyone here for your help. Maybe someday there will be a definitive cure for this wicked torture.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Mar 25, 2023
In reply to @carsonann "Thank you and will join the Facebook group on this!" + (show)
@carsonann

Thank you and will join the Facebook group on this!

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@carsonann and @seanmacbeth, There is a discussion on the protocol that you might want to join here:
-- Have you tried the new Protocol 525 product for neuropathy relief?:
https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/.

I've been taking the protocol since 2016 and feel it's helped me but I only have numbness and no pain with my neuropathy. It seems to have slowed or stopped the progression with my neuropathy but I haven't had any additional EMG tests to see if there has been an improvement. Part of my problem is that I have to wear compression socks for lymphedema and they always make my legs feel a little tingly from being squeezed all day long. Lately I can feel the bottom of my feet again so that is good enough of a reason for me to continue using the protocol.

REPLY
savomic | @savomic | Mar 26, 2023
In reply to @seanmacbeth "Have taken ALA synthetic for several months now with no results, so have been researching the..." + (show)
@seanmacbeth

Have taken ALA synthetic for several months now with no results, so have been researching the difference between that and R-ALA (Alpha Lipoic Acid) and will start soon. In my research I discovered something called The Protocol 525, a supplement (see site for ingredients). Very promising results from testimonials. They use high therapeutic doses of R-ALA, certain
B vitamins and Hemp Seed Oil. Expensive -over $200/month. They have a FB group to join. The ALA recommended dose is twice what I've been taking (600). Would like to have comments from anyone in Mayo group who knows of it or has tried it. It might be worth the cost, because putting together every ingredient in a stack would perhaps be around that amount and it's hard to find a B group without B6, the one B not included because of toxicity above 100mg daily. I had my vitamins checked last year and found I had a toxicity level of B6. It can actually cause neuropathy at higher levels! Curious to know if this is a breakthrough or just another false hope!

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I have been taking 600mg of R-ALA twice daily and B complex for 2 years now with no noticeable improvement with my neuropathy. I might depend of neuropathy type.

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2 replies
snagydude | @snagydude | Mar 26, 2023
In reply to @bettyg81pain "I notice that everyone takes Gabapentin and no one else is taking Pregabalin. Is there a..." + (show)
@bettyg81pain

I notice that everyone takes Gabapentin and no one else is taking Pregabalin. Is there a reason?

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I was on Gab for over three years and worked my way up to 1800 gms a day. At that dosage I began to have memory problems and it was not helping much. Have switched to Peregab at an entry level and it is helping some. My dosage will probably be increased since I seem to tolerate it and it is helping a little.

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1 reply
bettyg81pain | @bettyg81pain | Mar 27, 2023
In reply to @snagydude "I was on Gab for over three years and worked my way up to 1800 gms..." + (show)
@snagydude

I was on Gab for over three years and worked my way up to 1800 gms a day. At that dosage I began to have memory problems and it was not helping much. Have switched to Peregab at an entry level and it is helping some. My dosage will probably be increased since I seem to tolerate it and it is helping a little.

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When do you take it? I take two 25 mg before going to bed at night-if I try taking anything like that in the morning, I can hardly remember my name (in other words, not too brilliant)!

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1 reply
tigreyes2004 | @tigreyes2004 | Mar 27, 2023
In reply to @seanmacbeth "Have taken ALA synthetic for several months now with no results, so have been researching the..." + (show)
@seanmacbeth

Have taken ALA synthetic for several months now with no results, so have been researching the difference between that and R-ALA (Alpha Lipoic Acid) and will start soon. In my research I discovered something called The Protocol 525, a supplement (see site for ingredients). Very promising results from testimonials. They use high therapeutic doses of R-ALA, certain
B vitamins and Hemp Seed Oil. Expensive -over $200/month. They have a FB group to join. The ALA recommended dose is twice what I've been taking (600). Would like to have comments from anyone in Mayo group who knows of it or has tried it. It might be worth the cost, because putting together every ingredient in a stack would perhaps be around that amount and it's hard to find a B group without B6, the one B not included because of toxicity above 100mg daily. I had my vitamins checked last year and found I had a toxicity level of B6. It can actually cause neuropathy at higher levels! Curious to know if this is a breakthrough or just another false hope!

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how do you join on F.B?

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2 replies
carsonann | @carsonann | Mar 28, 2023
In reply to @tigreyes2004 "how do you join on F.B?" + (show)
@tigreyes2004

how do you join on F.B?

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Search The Protocol 525 in the search bar for info

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 28, 2023
In reply to @tigreyes2004 "how do you join on F.B?" + (show)
@tigreyes2004

how do you join on F.B?

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Here's the Facebook link to join the group - https://www.facebook.com/groups/spnpd.

FYI... Make sure if you join the group that you read the new members welcome introduction as the group has some strict guidelines for posting.

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snagydude | @snagydude | Mar 28, 2023
In reply to @bettyg81pain "When do you take it? I take two 25 mg before going to bed at night-if..." + (show)
@bettyg81pain

When do you take it? I take two 25 mg before going to bed at night-if I try taking anything like that in the morning, I can hardly remember my name (in other words, not too brilliant)!

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I would recommend that if you are taking Pregabalin that you work closely with your doctor. Taking 50 mg all at once may knock you out at night, but you will lose your dosage during the day. It can become a rather hectic cycle. Check with your doctor and work out a plan.

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uhenze | @uhenze | Jun 14, 2023

Th a nk s for sharing your findings. I will try the "Alpha Lipoic Acid" since nothing helps. You are very lucky having a neurologist suggestion something else the pain and nerve pills. I have peripheral neuropathy for many years and it's getting any better. I was taken 60mg Duloxetin for the past 3 years and now discovered Duloxetine is the worst thing to take for neuropathy.
I would appreciate if someone else heard about this.

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 14, 2023
In reply to @uhenze "Th a nk s for sharing your findings. I will try the "Alpha Lipoic Acid" since..." + (show)
@uhenze

Th a nk s for sharing your findings. I will try the "Alpha Lipoic Acid" since nothing helps. You are very lucky having a neurologist suggestion something else the pain and nerve pills. I have peripheral neuropathy for many years and it's getting any better. I was taken 60mg Duloxetin for the past 3 years and now discovered Duloxetine is the worst thing to take for neuropathy.
I would appreciate if someone else heard about this.

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Good evening @uhenze. I notice that this is your first post and want to make sure that I am reading the correct words. Would you please post a reference to the "discovery" of Duloxetine as the worst thing to take for neuropathy? I was given a prescription for Duloxetine after tapering off of a night-time medication. My instructions were to take the Duloxetine in the morning. Over the last four years.....my daily dosage has been increased to 120 mg. None of my clinicians including those in neuropathy and endocrinology have indicated that this medication is unhelpful for neuropathy. I have been struggling with SFN (small fiber neuropathy) for about 10 years. Please help me understand the reasons for the negative comment.

Has your clinician recommended a replacement? Have you found one on your own?

Thank you,
Chris

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