Neuropathy Pain at Night: What helps?

Posted by Donald @donfeld, Jun 8, 2020

THC or marijuana for me relieves pain from neuropathy. It works every time takes a few minutes and a few puffs of smoke and it comes it down for some crazy reason that makes this drug so popular.

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

Feet elevated in bed. Rub them with aspercreme with lidocaine. Covers folded back off feet with fan blowing on them all night.

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@smalone44

I use a shower seat and small plastic foot stool to keep my feet out of the water. Works for me.

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Hi @smalone44, Welcome to Connect. Thanks for sharing what helps you. Do you mind sharing a little more about your neuropathy diagnosis and how long you have had it?

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Mine started about 20 yrs ago. One big toe tingling. No answers from Dr. Down hill from there to now. Test show moderate to severe neuropathy. Last several months the burning has gotten much worse, mostly after dinner and thru the night. Do not have diabetes. Dr told me he could find no reason for problem, which to me was strange, because I later found out the DNA test I had showed 2 gene problems. Gene SPG11 is associated with several autosomal recessive problems having to do with lower limbs and motor axonal neuropathy. The other Gene is MCM3AP also mentions mostly same problems. Have been dealing with it ok until the burning and redness hit with a vengeance. Use shower seat, small foot stool and hand held shower so my feet do not get in the warm water. Feet elevated as much as possible during the day and in bed at night. fold my covers back from off my feet, use aspercreme with lidocaine at night and have fan running on feet the few hours of sleep I can get. Thinking I have moved on to Eyrthromelalgia. Only clinic I have found for this is in Minn and I am in Michigan. 78 yr old female hanging on the best I can. Ice does help. Any kind of heat at all sets the burning off. Looking now for a good R Lipoic acid brand. So many of them and all have good and bad reviews. Don't know who or what to believe. well, that's my sad story. Sorry to see there are so many people suffering with no answers
.

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@smalone44

Mine started about 20 yrs ago. One big toe tingling. No answers from Dr. Down hill from there to now. Test show moderate to severe neuropathy. Last several months the burning has gotten much worse, mostly after dinner and thru the night. Do not have diabetes. Dr told me he could find no reason for problem, which to me was strange, because I later found out the DNA test I had showed 2 gene problems. Gene SPG11 is associated with several autosomal recessive problems having to do with lower limbs and motor axonal neuropathy. The other Gene is MCM3AP also mentions mostly same problems. Have been dealing with it ok until the burning and redness hit with a vengeance. Use shower seat, small foot stool and hand held shower so my feet do not get in the warm water. Feet elevated as much as possible during the day and in bed at night. fold my covers back from off my feet, use aspercreme with lidocaine at night and have fan running on feet the few hours of sleep I can get. Thinking I have moved on to Eyrthromelalgia. Only clinic I have found for this is in Minn and I am in Michigan. 78 yr old female hanging on the best I can. Ice does help. Any kind of heat at all sets the burning off. Looking now for a good R Lipoic acid brand. So many of them and all have good and bad reviews. Don't know who or what to believe. well, that's my sad story. Sorry to see there are so many people suffering with no answers
.

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I've ordered this one in the past - Premium Supplements - R-Alpha Lipoic Acid 300MG of Pure R-LIPOIC Acid 90 Count. - https://www.amazon.com/gp/product/B01M0QS5C7/. I think there are a lot that are OK but I would look at the ingredients to make sure they are 100% R-ALA or R-Lipoic Acid since some of them advertise as all natural but contain 50% S-ALA and 50% R-ALA. The S-ALA is the synthetic part and doesn't really help the body from what I've read.

-- (R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging
https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/

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@johnbishop

I've ordered this one in the past - Premium Supplements - R-Alpha Lipoic Acid 300MG of Pure R-LIPOIC Acid 90 Count. - https://www.amazon.com/gp/product/B01M0QS5C7/. I think there are a lot that are OK but I would look at the ingredients to make sure they are 100% R-ALA or R-Lipoic Acid since some of them advertise as all natural but contain 50% S-ALA and 50% R-ALA. The S-ALA is the synthetic part and doesn't really help the body from what I've read.

-- (R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging
https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/

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I've been on Alpha Lipoic Acid 300mg for over 3 months and have not received any relief from pain or see where it is slowing down my neuropathy.

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@berrym66

I've been on Alpha Lipoic Acid 300mg for over 3 months and have not received any relief from pain or see where it is slowing down my neuropathy.

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Hi @berrym66, Welcome to Connect. Sorry to hear you haven't been helped with the Alpha Lipoic Acid. Some folks have reported relief for their neuropathy using the supplement but I think it's just one of many that are needed for nerve health. The Foundation for Peripheral Neuropathy has a list of supplements known to help with neuropathy on the Complementary and Alternative treatments list here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Do you mind sharing more about your neuropathy diagnosis and how long you have had neuropathy?

REPLY
@johnbishop

Hi @berrym66, Welcome to Connect. Sorry to hear you haven't been helped with the Alpha Lipoic Acid. Some folks have reported relief for their neuropathy using the supplement but I think it's just one of many that are needed for nerve health. The Foundation for Peripheral Neuropathy has a list of supplements known to help with neuropathy on the Complementary and Alternative treatments list here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf.

Do you mind sharing more about your neuropathy diagnosis and how long you have had neuropathy?

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In 2020, I had a very unfortunate bunion surgery. Big toe curved over after the surgery. Second toe hangs down and third toe cross over second toe. The doctor really messed my toes up. I had PT for three months with no results. I felt that something else was going on with my foot but it took me two years to be diagnosed with neuropathy. I truly believe this was the result of the pain and suffering I've gone through with the surgery. I also have neuropathy in both of my legs, and feet. I believe it's traveled to my hand or it's arthritis. Gabapentin didn't help at all.
So, this is my sad story.
Sincerely,
Marilyn

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Hi @smalone44, Thank you for the private message. I thought I would respond in this discussion in case other members may have some experience or information on Carbon 360 Plus.

I'm not familiar with the product so I did a search and found some information but not a lot of studies on it. I think Carbon 360 Plus is one of several products with Carbon 60 as a ingredient but really not sure. I think this is the one you may be referring to - https://biohacker.co.nz/products/carbon60-plus.

I think this is a similar product - https://c360health.com/product/carbon60-plus-2/. Here is some additional information that might be helpful:
-- Is Carbon 60 (C60) Good for You?: https://www.healthline.com/health/carbon-60-health-effects.

I think as with any supplement, it's good to discuss it with your doctor first.

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@berrym66

In 2020, I had a very unfortunate bunion surgery. Big toe curved over after the surgery. Second toe hangs down and third toe cross over second toe. The doctor really messed my toes up. I had PT for three months with no results. I felt that something else was going on with my foot but it took me two years to be diagnosed with neuropathy. I truly believe this was the result of the pain and suffering I've gone through with the surgery. I also have neuropathy in both of my legs, and feet. I believe it's traveled to my hand or it's arthritis. Gabapentin didn't help at all.
So, this is my sad story.
Sincerely,
Marilyn

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I have diabetes and I take gabapentin for neuropathy in my feet and legs and it helps a lot I get I sleep good I have sciatica and degenerative disc disease and the Gabapentin doesn't help as much for that my doctor tells me to take Tylenol for my back my my doctor also said that my back and my diabetes can be working together to cause a neuropathy pain I when I sit down on the couch for very long I can feel it in my back and especially the sciatica on my right side of pie and if I get up and walk around a little bit it helps a lot but even when I have just taken the Gabapentin that doesn't help that area or the sitting so I've got two different things going on there

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I'm not gonna go down that road what I think of the FDA/DEA machine. I will tell you I have severe neuropathy tbat never stops. Tried 5 meds that did nit work, and made me a zombie. One did work, but stopped working after 6 months. Duloxetine. But it stopped working entirely. And was difficult to taper off despite it no longer helping neuropathy. You know what HAS worked now for over a year? Kratom. Yes, you have to get a 3rd party tested kratom preferably from a seller thats a member of American Kratom Asociation. These physicians prescribing Gabapentin, Lyrica and all that othe stuff are clueless. I am for anything that works, pharmaceutical or natural. I have a friend tbat says Tramadol helps their severe neuropathy. No Dr. ever told me about that one though. Only Kratom, and NOTHING ELSE, has worked for me long term. It takes away 60-70% of the pain, making life bearable.

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