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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 6 hours ago | Replies (550)
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@kelsey1234

Hi John, Thank you for sharing your story. I am going through my journey of learning about small fiber neuropathy I am 54 and up until November 2020 I lived a highly physically active life that has changed dramatic by the neuropathy. It started in my buttocks and back as a burning pain with muscle spasms saw spine specialist had MRI of Cervical and Lumbar - reveaedl age related bulging disc but noting pinching. He conducted EMG and nerve studies to reveal that my large fiber nerves and muscles were fine and it appears to be small fiber. The burning pain since November as spread to almost every part of my body. Some days are better than others. I take Gabapentin 300 mg 3x a day increased to 600mg but had to pull back to 300 - the side effects were awful. Sleep is an issue. He prescribed nortriptyline 25mg to take at night. I'm apprehensive about taking it and have not started it. Not a fan of medications. I am curious of the supplements you are taking that has helped to bring your numbness back to below your knees. I would consult with neurologist to see if those could be an option for me. Thank you for your time. Kelsey

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Replies to "Hi John, Thank you for sharing your story. I am going through my journey of learning..."
John, Volunteer Mentor | @johnbishop | Mar 19, 2021

Hello @kelsey1234, I would like to add my welcome to Connect along with @artscaping and other members. Here's the link to a PDF on The Protocol 525 website that provides a list of the supplements and how the protocol came about - https://theprotocol525.com/wp-content/uploads/2020/09/Instructions_Introduction.pdf. I would recommend printing the information and discussing it with your doctor or care team. I also ran the list by my primary care doc who in turn shared it with a Mayo pharmacist for their thoughts. The thought the omega oils were a little high but no other concerns. I think the only problems I've heard about are if you are currently on a blood thinner which is a good reason to always run supplement by your doctor.

I only have the numbness and feel it has helped me but others I've met through the Facebook group have been able to taper off of their pain medications after being on the protocol for awhile and have found that the supplements help with the pain symptoms. I would recommend joining the Facebook group and reading their new member welcome message, then search the group using #theprotocolworks to read all of the different members success stories. Most members, including myself, have shared their story there with that tag to make it easy to read the experiences of others.

I also have some degenerative arthritis in my lower back and joints which I'm sure can contribute to nerve damage or pinching. I'm sure a bulging disc can cause some issues too that might be difficult to diagnose (my non medical opinion). @artscaping, @jenniferhunter and others have found Myofascial Release Therapy (MFR) beneficial for different conditions including nerve compression type pain. There is another discussion that you might find helpful on MFR - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

My primary care doc prescribed gabapentin for me also but I stopped it after 2 weeks since it did nothing for numbness and then after consulting with my primary care doc and her team, I learned that gabapentin nor any other drug helps with numbness.

Have you tried any supplements?

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