@ashley302

I'm 69, and have known for around ten years that I have idiopathic peripheral neuropathy, but the pain didn't start until 4 years ago. I tried every medication for neuropathy and they either did nothing for the pain or they had unacceptable side effects. I've been taking morphine sulfate contin for a few years, but it only makes the pain slightly less. Two years ago I had a Burst DR spinal cord stimulator implant, and it reduced the pain by more than 75%, but it has to be adjusted every few months to keep up with the pain. A month ago my pain specialist prescribed imipramine, and it really seems to be working. Hallelujah!!!

One drawback is that the stimulator is supposed to be MRI compatible but it turned out that it isn't. The company rep told me that some time this week he'll be cleared to download a system update that will (hopefully) make it possible for me to get the two MRI's that I need.

If you read through the posts in this discussion and others, you'll find out that a lot of people try a lot of different things. As to how neuropathy progresses, it's different for everyone, so no doctor can tell you exactly how it will progress for you. All that can be done is to treat the symptoms, and there are a ton of ways people do that.

Best of luck.

Jim

Hi @ashley302, I would like to add my welcome to Connect along with @jimhd and other members. Like Jim I also have idiopathic small fiber peripheral neuropathy and have had it for over 20+ years. I only have the numbness with my neuropathy and agree with Jim that it seems to affect each of us a little different and what works for one may not work for others. I take a protocol of vitamins and minerals which seems to have slowed or stopped my neuropathy progression but only time will tell. I shared what has helped me in my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You are here asking questions and that is great. One of the best things you can do to help yourself is to learn as much as you can about your condition. Knowledge is power and will help you when discussing treatment options with doctors. There are some other discussions on Connect that you might find helpful.

> Groups > Neuropathy > Scientific research and scholarly papers on Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your symptoms? Do you have numbness along with pain? Is it just in your feet?

Im so sorry for your diagnosis. It truly sucks at any age but, the younger you are, I feel the more unaccepting it can be. I began with SFN symptoms at 46.

Trial and error, a ton of research, along with perseverance will get you through as you adjust to a new normal. Hoping you were detected in early stages that may possibly bring nerve regeneration. My Neuro claims it can take up to a few years, no guarantee.

You have come to a supportive forum which has helped me geatly. Navigate the threads and learn from others experiences, each unique. Take notes then do your own research. Knowledge is power!

Good luck Ashley. We are here to help! Ask any questions, any time. 🤗
Rachel

I understand bc I am going through the same thing. The dr's are all puzzled & all I get is the run around. I know how you feel. Best of luck.

Good evening @ashley302, I haven't seen an update for you in your search for information about and treatment for SFN. I think you asked about natural remedies. Have you discovered any self-help treatments? At the top of my list are Yoga, Mindful Meditation and Myofascial Release (MFR ). The yoga and meditation are must-dos for connecting the body, mind, and spirit. I am happy to share more with you if you would find it worthwhile.

You are sooooo young. Perhaps there will soon be a medication that encourages nerves to regenerate. How do you think your small fiber nerves were injured?

You have made a decision to stop taking medication. How are you doing without medication? I understand your desire to be unencumbered with side effects and the possibility of dependency. I reached that point early in my SFN journey. That was when I engaged a "coach" to help me find the right natural remedy and that is medical cannabis. Have you explored that option? I am now four years down the cannabis road and have found a regimen that works best for me.

I am concerned about your anger and depression. How do you feel as you read this? How can I help? I am here for you.
May you have relief from pain. Chris