Small Fiber Neuropathy, Pain + Seeking Solutions

Posted by forest2005 @forest2005, Apr 20 5:57pm

Hello I have been suffering with Small Fiber Neurapthy since late 2014 and it is spreading from my feet to my hands. I am living in unbelievable pain everyday. I went to Mayo Clinic in Rochester seeking relief and help in 2014 where they confirmed my diagnosis. Here it is 2021 my pain is unbelievable and I cannot understand how I have pushed through this long but I am a fighter.. I am seeking new studies, new medicine anything to help with this unbelievable condition. I am 55 years old and this illness caused me to need a hip replacement because of how I walked to avoid putting pressure on the balls of my feet. Any advice would be appreciated .

@athenalee

Thank you for sharing! Very interesting article. It is just so pathetic that insurance doesn’t cover acupuncture. I couldn’t afford treatments, which is very frustrating when the only other option seems to be pharmaceuticals. Like you. many of my current meds (anti rejection) conflict with many other drugs and all pharmaceuticals harm your kidneys.

I hope you can find a way to keep getting your treatments. Please let us know how you progress.

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Thanks! I'll post in a few weeks to let you all know how it's going. I agree 100% that it is horrible that insurance doesn't cover treatments like acupuncture. (It's funny because they also won't pay for me to get education about diabetes until I actually have been diagnosed with full-fledged diabetes, which I am trying very hard to avoid!!) The neurologist that I saw also recommended that I do any practice that will quiet down my nervous system, like meditation and Tai Chi. A person that I happened to see doing Tai Chi in a local park a few weeks ago mentioned that she learned Tai Chi from watching YouTube videos. The name of the video series is Tai Chi in 5 Minutes a Day – https://www.youtube.com/watch?v=cEOS2zoyQw4 (Hopefully this link will get you there!) The instructor does an excellent job! Take care of yourself and never give up!!

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@anniesnaps

Thanks! I'll post in a few weeks to let you all know how it's going. I agree 100% that it is horrible that insurance doesn't cover treatments like acupuncture. (It's funny because they also won't pay for me to get education about diabetes until I actually have been diagnosed with full-fledged diabetes, which I am trying very hard to avoid!!) The neurologist that I saw also recommended that I do any practice that will quiet down my nervous system, like meditation and Tai Chi. A person that I happened to see doing Tai Chi in a local park a few weeks ago mentioned that she learned Tai Chi from watching YouTube videos. The name of the video series is Tai Chi in 5 Minutes a Day – https://www.youtube.com/watch?v=cEOS2zoyQw4 (Hopefully this link will get you there!) The instructor does an excellent job! Take care of yourself and never give up!!

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Hi @anniesnaps, I see that you mentioned about insurance won't pay to get an education about diabetes until you go from your pre-diabetes diagnosis to full-fledged diabetes. I was in the same boat in that I've always been labeled pre-diabetes by my primary care docs and a year or so ago I ran across a health blog by @LeeAase with a great video by Dr. Jason Fung that got me started about learning more and losing a little weight also. Lee's health blog entry that got me started was An Unfortunately Named Book – https://social-media-university-global.org/2020/02/an-unfortunately-named-book/. Here's the video that was included in the blog entry.

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@johnbishop Thanks for the link! I read the blog post and started watching the video, and it's really good. I'm going watch the rest of it with my husband. I think it will help both of us. I very much appreciate the resource!!

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@anniesnaps

Thanks! I'll post in a few weeks to let you all know how it's going. I agree 100% that it is horrible that insurance doesn't cover treatments like acupuncture. (It's funny because they also won't pay for me to get education about diabetes until I actually have been diagnosed with full-fledged diabetes, which I am trying very hard to avoid!!) The neurologist that I saw also recommended that I do any practice that will quiet down my nervous system, like meditation and Tai Chi. A person that I happened to see doing Tai Chi in a local park a few weeks ago mentioned that she learned Tai Chi from watching YouTube videos. The name of the video series is Tai Chi in 5 Minutes a Day – https://www.youtube.com/watch?v=cEOS2zoyQw4 (Hopefully this link will get you there!) The instructor does an excellent job! Take care of yourself and never give up!!

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Thank you for the Tai Chi link, I’ll check it out. I was doing weekly zoom lessons, plus practice during the winter. Focusing more on walking now, but probably good to do both! This is the person I’ve been following- https://qolnow.com/live. Take care!

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@anniesnaps

@johnbishop Thanks for the link! I read the blog post and started watching the video, and it's really good. I'm going watch the rest of it with my husband. I think it will help both of us. I very much appreciate the resource!!

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@anniesnaps — As a follow up, there is another great discussion on the same topic – Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

The discussion above is part of the LCHF Living & Intermittent Fasting group which also has other related discussions that you may want to checkout here — https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

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@johnbishop Thank you so much for letting me know about these discussions!

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