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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@dadroot

Thank you for responding!
I agree with you about Stem Cells in our lifetime. Even much of the current research is still written in pencil and chalk. I read somewhere about a woman who was up in arms because Medicare wouldn't cover Stem Cell Therapy for her... but Ive read so much about the subject lately Ive lost track.
I don't have much pain during the day, but then I stay reasonably active in our garden. However, a year ago I prided (is that a word?) myself on my upper body strength. Once I picked it up without falling over I was able to carry a bag of fertilizer or cement mix around our yard to where they needed to go. This summer I noticed that my fingertips are going numb and my upper body strength is quite a bit diminished. Now anything much heavier than a coffee much is almost impossible to hoist.
At nighttime I take prescribed Lyrica and if that doesn't quite do it I'll chomp a Marijuana Gummy or two so I can sleep.
What have you found that helps you?
-Don

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Replies to "Thank you for responding! I agree with you about Stem Cells in our lifetime. Even much..."

I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. I'm fortunate that I only have the numbness and some tingling with no real pain. I get my neuropathy supplements from a group I found on Facebook back in 2016 when I started my search for something that might help - https://theprotocolworks.com/. For the first 2 or 3 years the group maintained a list of supplements and links to where we could order them. Then the person who started the group met with a local pharmaceutical company and worked on having them combine the supplements into fewer capsules because folks didn't like taking so many capsules every day. So now it's down to 4 capsules in the morning, 2 at noon and 4 in the evening. They are trying to get the supplements into liquid form but probably won't happen in 2025. They do have a FAQ list on their website and one of the questions is Why the Protocol?. I made a PDF with a link to the research behind each of the supplements. The website has it but doesn't actually link to the research.

Another helpful site is the Foundation for Peripheral Neuropathy. Their complementary and alternative treatments list most all of the same supplements I take in the protocol - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. They also have a lot of other information you might find helpful - https://www.foundationforpn.org/living-well/.

Shared files

Why the Protocol (Why-the-Protocol.pdf)