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 .

Hello @forest2005 and welcome to Mayo Clinic Connect. Thank you for sharing your story with the community. From reading your post, it is clear the pain seems to be the greatest struggle. Because of that, and your interest in seeking new ways to care for your SFN, you will notice I have updated the title of your post to allow more members to find your post and share their experiences on pain and seeking solutions.

Members such as @maryflorida @steeldove @rwinney @artscaping and @johnbishop all have shared about their journey with SFN and may have additional information on new studies and medicine.

What are you currently doing for your pain management?

REPLY

Hello @forest2005, I would like to add my welcome to Connect along with @amandajro and others. I was also diagnosed at Rochester Mayo in 2016 with idiopathic small fiber PN but I don't have pain just numbness. I got the same answer from the neurologist that my previous doctors told me, that is there is no drugs or topicals that will help with the numbness. That is when I started my own search to find something that helps and how I found Connect. There is another discussion where members including myself have shared what helps them that you might want to read through while you wait for other members to respond here.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned needing a hip replacement. I had my right knee replaced about 2 years ago and I'm concerned about my right hip also. My wife has told me many times since I was in my early 50s that I walked like an old man and I'm 77 soon to be 78 now 🙂 I've focused on losing some weight and exercising more to build my strength. You may also be interested in the following discussion:

Strength training: How-to video collection: https://connect.mayoclinic.org/discussion/strength-training-how-to-video-collection/

Have you already had a hip replaced?

REPLY
@johnbishop

Hello @forest2005, I would like to add my welcome to Connect along with @amandajro and others. I was also diagnosed at Rochester Mayo in 2016 with idiopathic small fiber PN but I don't have pain just numbness. I got the same answer from the neurologist that my previous doctors told me, that is there is no drugs or topicals that will help with the numbness. That is when I started my own search to find something that helps and how I found Connect. There is another discussion where members including myself have shared what helps them that you might want to read through while you wait for other members to respond here.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned needing a hip replacement. I had my right knee replaced about 2 years ago and I'm concerned about my right hip also. My wife has told me many times since I was in my early 50s that I walked like an old man and I'm 77 soon to be 78 now 🙂 I've focused on losing some weight and exercising more to build my strength. You may also be interested in the following discussion:

Strength training: How-to video collection: https://connect.mayoclinic.org/discussion/strength-training-how-to-video-collection/

Have you already had a hip replaced?

Jump to this post

Yes, I had it done in 2016.

REPLY
@amandajro

Hello @forest2005 and welcome to Mayo Clinic Connect. Thank you for sharing your story with the community. From reading your post, it is clear the pain seems to be the greatest struggle. Because of that, and your interest in seeking new ways to care for your SFN, you will notice I have updated the title of your post to allow more members to find your post and share their experiences on pain and seeking solutions.

Members such as @maryflorida @steeldove @rwinney @artscaping and @johnbishop all have shared about their journey with SFN and may have additional information on new studies and medicine.

What are you currently doing for your pain management?

Jump to this post

LIDOCAINE PATCHES, CBC topical cream- haven't found one that really helps. I have tramadol however it doesn't help.

REPLY

Would anyone be wiling to share your experience with using CBD or CBG oil along with gabapentin. I have not tried but was wondering if using this may help with not having to increase my current gabapentin dosage which is giving me a 50-60% reduction in burning pain but I am only on for less than 30 days. I did tell my doctor I was using CBD cream in localized spots, with short term effect but my burning is entire body front and back so looking for systemic solution but without THC. Thank you in advance.

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@marenew

Would anyone be wiling to share your experience with using CBD or CBG oil along with gabapentin. I have not tried but was wondering if using this may help with not having to increase my current gabapentin dosage which is giving me a 50-60% reduction in burning pain but I am only on for less than 30 days. I did tell my doctor I was using CBD cream in localized spots, with short term effect but my burning is entire body front and back so looking for systemic solution but without THC. Thank you in advance.

Jump to this post

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.

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@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

thank you this is most helpful

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@amandajro

Hello @forest2005 and welcome to Mayo Clinic Connect. Thank you for sharing your story with the community. From reading your post, it is clear the pain seems to be the greatest struggle. Because of that, and your interest in seeking new ways to care for your SFN, you will notice I have updated the title of your post to allow more members to find your post and share their experiences on pain and seeking solutions.

Members such as @maryflorida @steeldove @rwinney @artscaping and @johnbishop all have shared about their journey with SFN and may have additional information on new studies and medicine.

What are you currently doing for your pain management?

Jump to this post

I am using three Lidocaine patches everyday, a topical compound from my GP and Zolpidem to sleep. I have tried light therapy, PT, swimming, loosing weight and still nothing but misery. I hate to sound negative however no medical provider really took a serious interest in truly helping me. I guess I am feeling sorry for myself and simply giving up.

REPLY
@johnbishop

Hello @forest2005, I would like to add my welcome to Connect along with @amandajro and others. I was also diagnosed at Rochester Mayo in 2016 with idiopathic small fiber PN but I don't have pain just numbness. I got the same answer from the neurologist that my previous doctors told me, that is there is no drugs or topicals that will help with the numbness. That is when I started my own search to find something that helps and how I found Connect. There is another discussion where members including myself have shared what helps them that you might want to read through while you wait for other members to respond here.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned needing a hip replacement. I had my right knee replaced about 2 years ago and I'm concerned about my right hip also. My wife has told me many times since I was in my early 50s that I walked like an old man and I'm 77 soon to be 78 now 🙂 I've focused on losing some weight and exercising more to build my strength. You may also be interested in the following discussion:

Strength training: How-to video collection: https://connect.mayoclinic.org/discussion/strength-training-how-to-video-collection/

Have you already had a hip replaced?

Jump to this post

Yes in 2016

REPLY

are you on any pain medications?

REPLY

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
@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
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