1. < Neuropathy

Small Fiber Neuropathy, Pain + Seeking Solutions

Posted by forest2005 @forest2005, Apr 20, 2021

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 .

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anniesnaps | @anniesnaps | Jun 21, 2021

I have had small fiber neuropathy in my feet for several years, and in the past several months it has gotten much worse. A neurologist that I saw told me it is probably caused from having pre-diabetes for years. (I haven't gotten full blown diabetes, but the constant semi-high blood sugar levels could be causing it. The pre-diabetes, along with metabolic syndrome, weight gain, etc. is a result of being on a certain mental health medications for 12 years.) The neurologist suggested medication, but I'm allergic to so many meds and can't take others because of interactions. He also suggested acupuncture and gave me the name of a licensed acupuncturist who has also worked in western medicine. I brought her an article from NIH, which the doctor suggested I do. Here's a link to the article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733739/

The acupuncturist said she has treated people with neuropathy, and is familiar with SFN. She said that since this is a neurological problem it will take more sessions that most other issues that people see acupuncturists for. I have seen her twice a week for two weeks so far, and I have just started to notice a slight difference in the way that my feet feel. (After having been through so many medical treatments and surgeries and pain management for all sorts of things the past ten years I tend to not trust myself to really know how my body feels, so I might be imagining that I'm getting relief from the SFN.!) It's too early to tell. It will take several more weeks to really know. My insurance doesn't cover acupuncture, so I'm paying $85 per session, which is adding up quickly. I was desperate, as so many of the people who post on here are, so I am willing to try anything. Please check out the article, particularly the case studies. It gave me a lot of hope.

REPLY
1 reply
athenalee | @athenalee | Jun 21, 2021
In reply to @anniesnaps "I have had small fiber neuropathy in my feet for several years, and in the past..." + (show)
@anniesnaps

I have had small fiber neuropathy in my feet for several years, and in the past several months it has gotten much worse. A neurologist that I saw told me it is probably caused from having pre-diabetes for years. (I haven't gotten full blown diabetes, but the constant semi-high blood sugar levels could be causing it. The pre-diabetes, along with metabolic syndrome, weight gain, etc. is a result of being on a certain mental health medications for 12 years.) The neurologist suggested medication, but I'm allergic to so many meds and can't take others because of interactions. He also suggested acupuncture and gave me the name of a licensed acupuncturist who has also worked in western medicine. I brought her an article from NIH, which the doctor suggested I do. Here's a link to the article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733739/

The acupuncturist said she has treated people with neuropathy, and is familiar with SFN. She said that since this is a neurological problem it will take more sessions that most other issues that people see acupuncturists for. I have seen her twice a week for two weeks so far, and I have just started to notice a slight difference in the way that my feet feel. (After having been through so many medical treatments and surgeries and pain management for all sorts of things the past ten years I tend to not trust myself to really know how my body feels, so I might be imagining that I'm getting relief from the SFN.!) It's too early to tell. It will take several more weeks to really know. My insurance doesn't cover acupuncture, so I'm paying $85 per session, which is adding up quickly. I was desperate, as so many of the people who post on here are, so I am willing to try anything. Please check out the article, particularly the case studies. It gave me a lot of hope.

Jump to this post

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.

REPLY
1 reply
anniesnaps | @anniesnaps | Jun 21, 2021
In reply to @athenalee "Thank you for sharing! Very interesting article. It is just so pathetic that insurance doesn’t cover..." + (show)
@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.

Jump to this post

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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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 21, 2021
In reply to @anniesnaps "Thanks! I'll post in a few weeks to let you all know how it's going. I..." + (show)
@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!!

Jump to this post

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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anniesnaps | @anniesnaps | Jun 22, 2021

@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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1 reply
athenalee | @athenalee | Jun 22, 2021
In reply to @anniesnaps "Thanks! I'll post in a few weeks to let you all know how it's going. I..." + (show)
@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!!

Jump to this post

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!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 22, 2021
In reply to @anniesnaps "@johnbishop Thanks for the link! I read the blog post and started watching the video, and..." + (show)
@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!!

Jump to this post

@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/

REPLY
anniesnaps | @anniesnaps | Jun 23, 2021

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

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veter | @veter | Dec 9, 2022
In reply to @athenalee "My experience is with THC/CBD tincture (40:60 I think). I was taking it with Gabapentin (200-300..." + (show)
@athenalee

My experience is with THC/CBD tincture (40:60 I think). I was taking it with Gabapentin (200-300 mg at night typically; both medically prescribed) due to severe cramps caused by liver disease. I found the combination worked well to calm the pain, relax me, and help me sleep. I’ve since had a liver transplant, but now suffer various neuropathy symptoms, severe muscle and joint pain, sharp nerve pains in my legs and feet, etc. Unfortunately both CBD and THC conflict with one of my anti rejection drugs, or I’d definitely continue with the combination, as it worked better for me than just the Gabapentin.

Jump to this post

could you say, which THC/CBD tincture you used?

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