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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)

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@artscaping

Good afternoon @shitnyoung. I would like to add my welcome to that of @johnbishop. He has given you a good start with his response. I do have SFN and was diagnosed in 2017 also. And yes, it gets worse. When I think about how I felt in 2017 and how I feel now it is an amazing difference in severity. My SFN is trauma-related from injuries and orthopedic surgeries.

Today, I would like to see if I can help with the balls of your feet. Yes, they can hurt unbelievably. Are you driving? If so, do your SFN feet interfere? Are you using any topical ointment? I started with a Lidocaine-based compound ordered by my neurologist. It helped and he was able to increase its potential by changing the formula. There are compounding pharmacies that create these rather individual and one-of-a-kind treatments.

However, after a while I needed more. That is when I was introduced to MFR.........myofascial relief therapy. I have my feet done twice a week now and that keeps them in a reasonably feel-good state.

I also changed my pain medication to medical cannabis and use a CBD/THC balm on my feet. And finally, I don't know if this is a biggie but I changed my daily shoes to Hokas. They give me a good foundation for walking. Standing for more than a few minutes is another situation and a hurdle I have not conquered.

Let's move to your ears. Do you have Tinnitus in your ears? Is the "burning" inside both of your ears? There are discussions going back and forth about neuropathy being responsible for ear pain. Now you may not believe this but I recently began to use hearing aids for the advancement of inadequate hearing. I was surprised to find that my Tinnitus and ear pain have diminished....not totally disappeared but making rare and less painful appearances.

If I could change these three words for you........."I'm absolutely miserable"......I would be there in a heartbeat. I know what miserable feels like and still feel that way at times. That is when I practice meditation and mindfulness. Have you ever considered learing about using those practices to improve your tolerance and resilience?

May you be free of suffering and the causes of suffering.
Chris

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Replies to "Good afternoon @shitnyoung. I would like to add my welcome to that of @johnbishop. He has..."

Thank you Chris for taking the time to reply back to my message. I thought maybe I was the only person with SFN that had the balls of my feet so painful to make walking nearly impossible. I thought maybe my mind in running away with this thing and could it be fibromyalgia on top of the SFN. It hurts to cross my legs (the muscles) in fact my major muscle groups ache something terrible with the least exercise. I live in a small town so taking advantage of some of these treatments is not available here. I do have tinnatis continually, my ears burn when I lay on a pillow like a norma person and I can only listen to earbuds for a short time before that becomes uncomfortable. Feels like I've got a bug crawling in my ear canal. I can still drive, but the burning of my thighs and buttocks is just a matter of endurance. How much I can ignore the pain. The facial massage, is it on the face? And that helps the feet? Thanks again

Shelton