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Idiopathic Small Fiber Neuropathy Research
Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)Comment receiving replies
I have been diagnosed with SFN since 2017 with no relief in pain. Actually, it gets worse and affects so much of my body. Two things I hope that someone can relate or inform. 1) The balls of my feet hurt so bad that I cannot stand very long and sitting is equally uncomfortable due to burning in legs and hips. I feel like its just a matter of time before I will be on some sort of scooter and/or bed ridden. 2) Any time I lay on my side my ears burn so bad when anything touches them. I use the corner of my pillow under just the top side of my head to sleep. I'm absolutely miserable and don't know what to do.
Replies to "I have been diagnosed with SFN since 2017 with no relief in pain. Actually, it gets..."
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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Welcome @shltnyoung, I am sorry to hear that you have not found any relief for your small fiber neuropathy symptoms and it's going on 5 years. I'm wondering if you might find some benefit in reading what other members have shared in this discussion:
Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
Neuropathy websites you might find helpful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
It's easy to get down in the dumpers when you are hurting so much. Have you done any research into your condition to see if there might be other types of treatments that might help provide some relief?