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.

@johnbishop

Hello @robtlhughes, You will notice we moved your post to an existing discussion on supplements in the Neuropathy group. If you click the VIEW & REPLY button it will take you to this reply to your post in the discussion Supplement recommendations: What can help neuropathy?.

I take active form of Alpha Lipoic Acid (R-ALA) as I'm sure others also take to help with their neuropathy. I have never tried Two Old Goats products but I have my doubts since what I get from reading their website is they are a proprietary blend of several different essential oils. I tried mixing my own essential oils early on in my experimenting to see if it would help me and I didn't find that it gave my numbness any relief. It may help for pain but I would have to leave that for someone else to share their experience. You might want to read my post above which talks about the 2 versions of Alpha Lipoic Acid (S-ALA and R-ALA). Here is a link to the post - https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/?pg=1#comment-346329

Here's another list that you may find helpful from Medical News Today - Which supplements can help with neuropathy?: https://www.medicalnewstoday.com/articles/326917

You might also be interested in joining in the following discussion and learning what other have shared...
Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

@rwinney @jesfactsmon @katec and other members may have some suggestions to share with you on the burning symptom.

Do you use any kind of lotion on your legs at night now?

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I use Mary Jane's salve . It is 70 % thc and 30 % cbd . I mix it with magnesium lotion . I put it on my feet before I go to bed. It stops the tingling and burning .

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@pacer3702

I never heard of IV alpha lipoic acid treatments. Are you having this done at a major medical center?

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I am getting it done at Dakota IV center . Look it up on line .

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I was misdiagnosed with gout around 25 years when I had a swollen red painful big toe on my left foot. This continued, even though I never had high uric acid. Eventually the pain was so bad, about 3 years ago, my doctor reluctantly sent me to a rheumatologist who at first agreed but after tests said I never had or did have gout and said to see a neurologist immediately. After checking my reflexes (which doctors don't do any more) and my hands, he said I had peripheral neuropathy and immediately put me on Jarrow ALA as he conducted tests to verify. After 3 weeks I had a lot of relief but switched to Pure Encapsulations which was much more expensive but provided much more relief. I eventually was taking 2400 mg to get rid of all the pain. After though losing 50 pounds, I'm now taking 1200 mg a day. There's no pain, a little redness, and a little crunchiness.

I recently was diagnosed with breast cancer and am taking Letrozole. I'm now feeling numbness in my legs which I didn't have before. I've also seen on Sloan Kettering Site that during radiation, one shouldn't take antioxidants such as A,C,E and ALA. I was not told this by my hospital. Unfortunately my neurologist has retired and I couldn't get an immediate appointment with the practice at my hospital. Is there any advice or experience anyone can provide?

Thanks

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@deluga

I was misdiagnosed with gout around 25 years when I had a swollen red painful big toe on my left foot. This continued, even though I never had high uric acid. Eventually the pain was so bad, about 3 years ago, my doctor reluctantly sent me to a rheumatologist who at first agreed but after tests said I never had or did have gout and said to see a neurologist immediately. After checking my reflexes (which doctors don't do any more) and my hands, he said I had peripheral neuropathy and immediately put me on Jarrow ALA as he conducted tests to verify. After 3 weeks I had a lot of relief but switched to Pure Encapsulations which was much more expensive but provided much more relief. I eventually was taking 2400 mg to get rid of all the pain. After though losing 50 pounds, I'm now taking 1200 mg a day. There's no pain, a little redness, and a little crunchiness.

I recently was diagnosed with breast cancer and am taking Letrozole. I'm now feeling numbness in my legs which I didn't have before. I've also seen on Sloan Kettering Site that during radiation, one shouldn't take antioxidants such as A,C,E and ALA. I was not told this by my hospital. Unfortunately my neurologist has retired and I couldn't get an immediate appointment with the practice at my hospital. Is there any advice or experience anyone can provide?

Thanks

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Hello @deluga, Welcome to Connect. There are some discussions in the Breast Cancer where you can learn what others have shared and might be helpful.

-- Letrozole: https://connect.mayoclinic.org/discussion/letrozole/
-- B1(Thiamine) levels checked if you have nerve problems with cancer: https://connect.mayoclinic.org/discussion/b1thiamine-levels-checked-if-you-have-nerve-problems-with-cancer/

Also, there is an older discussion from 2016 that mentions neuropathy side effects from taking Letrozole -- Breast Cancer and Neuropathy: https://connect.mayoclinic.org/discussion/just-to-say-hello/

While we wait for members with experience to respond, I did find this article that addresses your question -- What You Need to Know About Taking Antioxidants During Your Radiation Therapy: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/What_You_Need_to_Know_about_Antioxidants_and_Your_Radiation_Therapy.pdf

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I’d also recommend you speak with your oncologist who work very closely with pharmacist on cancer treatment clinics. Between the two you should be able to get some help. Pharmacist know a great deal more about meds than docs especially those in speciality fields. Good luck

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Has anyone used R-ALA? That is R- Alpha Lipoic Acid? I am new to this...about 4 months of idiopathic PN thus far. I have quite a bit of pain in my feet ankles abdomen sinuses and ears. I am taking 1200mg of Gabapentin. Is it good idea to add R-ALA?

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@pacodennis

Has anyone used R-ALA? That is R- Alpha Lipoic Acid? I am new to this...about 4 months of idiopathic PN thus far. I have quite a bit of pain in my feet ankles abdomen sinuses and ears. I am taking 1200mg of Gabapentin. Is it good idea to add R-ALA?

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Hello @pacodennis. I noticed you are interested in connecting with others on the R-ALA supplement so you will see that I have moved your post into an existing discussion on the topic of supplements for neuropathy here: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/

Members such as @sunnyflower @busterbrown and @johnbishop have all mentioned the supplement you are interested in and may be able to share their experiences.

Is this something you have asked your neurologist about, by chance? If so, what information were you given?

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I take all the B vitamins in a gummy. I’m new to finding things that will work to reduce the hell of pain. Just started to really control the carbs and sugars. It helps. Good Luck to you. I hope something helps. We are in the same pain boat but I don’t have it in my arms, my legs, toes and feet

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@nemo1

I take all the B vitamins in a gummy. I’m new to finding things that will work to reduce the hell of pain. Just started to really control the carbs and sugars. It helps. Good Luck to you. I hope something helps. We are in the same pain boat but I don’t have it in my arms, my legs, toes and feet

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Legs toes and feet is where neuropathy is concentrated.

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