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.

@artscaping

Good afternoon @dianeee, thank you for responding to my post. Do you think your evidence of neuropathy is a result of your chemo treatments? Many of the folks with neuropathy have undergone treatment for cancer.

Actually, I want to let you know about my experience with Gabapentin which began in 2013….with my diagnosis of SFN (small fiber neuropathy). The first Rx was for mornings and I did not do well with that time of day. A bit fuzzy and unsure of my solidarity. So….my neurologist changed it to bedtime, telling me that Gabapentin can stay with you until about noon the next day. That worked well.

Several years later I began to start my day with Duloxetine which has been my constant anti-anxiety companion for years. I chose to taper off half of my Gabapentin dosage and that also worked well. I did notice that if I forgot my nighttime Gabapentin, I paid the price the next day with a heaviness and pain especially in my legs.

Just last Monday…..I wanted to try to be free of Gabapentin again because I didn’t think I needed it any more. I decided to do a slow taper off of that medication. Boy was I wrong. Even my MFR therapist said that my extensively greater level of pain was because I had deleted one of my 300 mg Gabapentin pills. According to her, she learned that 75% of improvement with neuropathy comes from the medications we choose to take and 25% from therapies e.g. acupuncture and other treatment options.

So…..last night I started Gabapentin again and guess what????? As soon as I sign off and say goodbye to you for today……I will head to the river to walk and do my stretch yoga exercises. Today I actually feel like doing that again.

Not everyone will have the same story because we all react so differently to medications. Just make sure you are no passing up an opportunity to allelviate some of the symptoms you are currently experiencing.

Let me know if you have other questions. I am anxious to know of your decision and how you choose to tackle those tingling, burning, and numbness symptoms with which you are currently dealing.

May you be free of suffering and the causes of suffering.

Chris

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Thank you for sharing your information.

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@dianeee

Hi,
I had breast cancer, I did chemo, surg. and radiation etc.
I developed neuropathy in my hands and feet, I have been doing acupuncture for a while. The hands are better, but the feet not so much, tingling, burning and numbness and sudden sharp stabbing pains still persist after 2 years.
I take Vit B.
My regular Dr. said I could try Gabapentin but on reading there seems to be a lot of side effects. Any other suggestions out there would be appreciated. I am scrolling through all the other remarks. Thank you.

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I have been taking Gabapentin (300mg nightly) for 6-9 (?) months and it does help, but not nearly enough. I do still have significant pain with Gabapentin.

Because of this, I also take CBD/THC gummies to help. When I do (daily), the pain is suppressed significantly (not entirely, but enough that I am no longer in tears). I can function. Mind you, I cannot drive due to the neuropathy, but I am not in "I'm on fire" mode.

I'm taking the brand "five" and it contains 25mg CBD and 2mg THC, and I take it before bedtime and as needed during the day. It helps A LOT.

You can purchase higher doses, but I wanted to start with the lowest dose to see if that could help me and it has. Here is the link. I hope this helps!

https://fivecbd.com/products/cbd-gummies?variant=39671891558490
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@txsongbird

I have been taking Gabapentin (300mg nightly) for 6-9 (?) months and it does help, but not nearly enough. I do still have significant pain with Gabapentin.

Because of this, I also take CBD/THC gummies to help. When I do (daily), the pain is suppressed significantly (not entirely, but enough that I am no longer in tears). I can function. Mind you, I cannot drive due to the neuropathy, but I am not in "I'm on fire" mode.

I'm taking the brand "five" and it contains 25mg CBD and 2mg THC, and I take it before bedtime and as needed during the day. It helps A LOT.

You can purchase higher doses, but I wanted to start with the lowest dose to see if that could help me and it has. Here is the link. I hope this helps!

https://fivecbd.com/products/cbd-gummies?variant=39671891558490

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Thank you for your reply and information, I appreciate it very much.

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@artscaping

Good afternoon @dianeee, thank you for responding to my post. Do you think your evidence of neuropathy is a result of your chemo treatments? Many of the folks with neuropathy have undergone treatment for cancer.

Actually, I want to let you know about my experience with Gabapentin which began in 2013….with my diagnosis of SFN (small fiber neuropathy). The first Rx was for mornings and I did not do well with that time of day. A bit fuzzy and unsure of my solidarity. So….my neurologist changed it to bedtime, telling me that Gabapentin can stay with you until about noon the next day. That worked well.

Several years later I began to start my day with Duloxetine which has been my constant anti-anxiety companion for years. I chose to taper off half of my Gabapentin dosage and that also worked well. I did notice that if I forgot my nighttime Gabapentin, I paid the price the next day with a heaviness and pain especially in my legs.

Just last Monday…..I wanted to try to be free of Gabapentin again because I didn’t think I needed it any more. I decided to do a slow taper off of that medication. Boy was I wrong. Even my MFR therapist said that my extensively greater level of pain was because I had deleted one of my 300 mg Gabapentin pills. According to her, she learned that 75% of improvement with neuropathy comes from the medications we choose to take and 25% from therapies e.g. acupuncture and other treatment options.

So…..last night I started Gabapentin again and guess what????? As soon as I sign off and say goodbye to you for today……I will head to the river to walk and do my stretch yoga exercises. Today I actually feel like doing that again.

Not everyone will have the same story because we all react so differently to medications. Just make sure you are no passing up an opportunity to allelviate some of the symptoms you are currently experiencing.

Let me know if you have other questions. I am anxious to know of your decision and how you choose to tackle those tingling, burning, and numbness symptoms with which you are currently dealing.

May you be free of suffering and the causes of suffering.

Chris

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Thank you for the information. I am trying to not take medications at this time and just tolerating things, sometimes the tingling etc. is better than others, any luck with topical treatments?

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To @txsongbird
Your experience with CBD and THC looks very interesting and worth exploring. I've been playing with gabapentin for 7 months now and can't seem to find the optimal time to take it. I think I'm also developing a tolerance for it, as lately it's not doing nearly enough. Thanks much for the link. It's wonderful that people still care about each other and are helping one another with our mutual suffering.

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@kbirchem

I started getting alpha lipoic acid IV therapy. I am getting it one time weekly . I will let you know how it is going.

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Hi. Did the iv ALA help?

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@maggie1960

@johnbishop Thanks so much for the input about the kind of ALA you use, how much you are taking, and the link for purchasing it. I used ALA for a month but wasn't well educated enough to know the difference between the S-ALA and R-ALA. What I took did not help at all, and looking online just now at my previous purchase it was obviously the S-ALA. I told my neurologist I had tried ALA and that it had not helped. She said ALA was one of the things she always recommended but she never asked which kind I had used or offered up any information about the differences between the two. I may have already mentioned to you that I am looking for a new neurologist for many other reasons. This is just one more reason I need to keep looking.
You are a constant source of good and useful information. Many thanks!

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Hi, John. I was taking R-ALA, 600mg. first thing in the morning on an empty stomach and waiting 2 hrs. Before eating as information said. I was in it a month and started itching all over, almost non-stop. Looked for info on side effects and said itching was one of the less frequent side effects. I stopped taking it and the itching has stopped. Has anyone else ever experienced this? Does anyone take with food?

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@jchet

Hi, John. I was taking R-ALA, 600mg. first thing in the morning on an empty stomach and waiting 2 hrs. Before eating as information said. I was in it a month and started itching all over, almost non-stop. Looked for info on side effects and said itching was one of the less frequent side effects. I stopped taking it and the itching has stopped. Has anyone else ever experienced this? Does anyone take with food?

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I know the Protocol 525 group suggests taking the R-ALA with food but it was because some folks had digestive issues when they took it on an empty stomach. I take my supplements every morning on an empty stomach but it's more because I do intermittent fasting and my eating window is mid-morning to early afternoon. I've had itching on my back and arms but never attributed it to R-ALA because I had the itching before I started taking it.

It would be interesting to see if the itching stopped if you start taking the R-ALA with food.

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i have small fiber neuropathy caused by Igm mgus and tshds antibody which is an immune problem with the blood cells may or may not progress to lymphoma the pain is horrible every day and i take alpha lipoic acid and turmeric but what helps for a little while is cayenne pepper is stops nerve pain just wondering if yours is caused by a blood problem like me

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@rpenn

i have small fiber neuropathy caused by Igm mgus and tshds antibody which is an immune problem with the blood cells may or may not progress to lymphoma the pain is horrible every day and i take alpha lipoic acid and turmeric but what helps for a little while is cayenne pepper is stops nerve pain just wondering if yours is caused by a blood problem like me

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Hello @rpenn, Welcome to Connect. Thank you for sharing. I'm glad you've found something that helps provide some relief from the everyday pain. There is another discussion you might find helpful:

-- TS-HDS Antibody and Small Fiber Neuropathy:
https://connect.mayoclinic.org/discussion/ts-hds-antibody-and-small-fiber-neuropathy/

There is also an upcoming webinar on October 6th from the Foundation for Peripheral Neuropathy that you might find helpful. More details on how to register for this free webinar in the above discussion here --- https://connect.mayoclinic.org/comment/749431/

It's sometimes hard to tell who your post is replying to unless you tag them with their member name. This mostly occurs when you use the Post Comment box instead of the Reply under a post.

Was your question for @newzbug who started this discussion or a different member?

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