1. < Neuropathy

The maddening problem of SFN

Posted by phillyrich19 @phillyrich19, Feb 17, 2023

I'm new here and have to admit the site can be overwhelming. I have Small Fiber Neuropathy (confirmed by skin punch test.) I'm continually told that: "no treatment is available." Like many people I have many symptoms-- from numb fingers and feet to light, noise and cold sensitivity. My great joy is playing my piano- getting harder all the time. Most people are unsympathetic. I am aging alone. I keep searching for some glimmer of hope. Are any new medications or treatments on the horizon? Diet? Exercise? Anything? Is there even an empathetic podcast or youtube channel?

Interested in more discussions like this? Go to the Neuropathy Support Group.

phillyrich19 | @phillyrich19 | Feb 20, 2023
In reply to @johnbishop "Hello @phillyrich19, Welcome to Connect. You are not aging alone and there is a lot of..." + (show)
@johnbishop

Hello @phillyrich19, Welcome to Connect. You are not aging alone and there is a lot of hope out there. You just have to find it. I think a lot of people are unsympathetic because they don't know the feeling or lack of feeling. I actually found Connect because I also was told there are no treatments that help with the numb feeling. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

To answer your question about what you can do to help yourself - learn as much as you can about your condition and what treatments are available that offer some relief. Here are two sites that I think can get you started:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
--- Presentations & Videos: https://www.foundationforpn.org/living-well/fpn-media-center/.

Here are a few other discussions you might find helpful:
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
--- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
--- Ketogenic Diets and Pain: https://connect.mayoclinic.org/discussion/ketogenic-diets-and-pain/.

Do you do any hand exercises to help with playing the piano?

Jump to this post

Thank you for all the information. It is much appreciated.

REPLY
phillyrich19 | @phillyrich19 | Feb 20, 2023
In reply to @artscaping "Good evening @phillyrich19, I would like to join @johnbishop and @aaroncush in welcoming you to Connect...." + (show)
@artscaping

Good evening @phillyrich19, I would like to join @johnbishop and @aaroncush in welcoming you to Connect. And yes, there is no cure. And yes, the nagging symptoms of pain an discomfort do become more impactful and irritating. My diagnosis came to me from the skin punch biopsy method about 10 years ago.

Because I don't handle medications well it was not unusual to have to find alternative "weapons" to help me continue to be able to drive, type, exercise, stand in the kitchen to prepare meals, or do many other normal activities. My neurologist worked on some custom solutions with a lidocaine base. These medications are compiled in a specialty pharmacy and the ingredients can be changed and altered by your clinician as your situation evolves.

That worked for a while and then the SFN moved on and the numbness and pain increased. A nurse friend of mine introduced me to medical cannabis ...... where I found others to provide instructions in dosages and product selections. At this point, my pain numbness, and other symptoms are managed in two ways.

For daily living, my pain is controlled totally by medical cannabis, both tinctures, and topicals. For progressive relief that simply facilitates living, I have two sessions a week of MFR, myofascial release therapy. If you would like additional information about these two options, please just let me know and I will connect you.

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

Jump to this post

Thank you for your kind words. My main concern is not pain, as my pain is manageable, it is the frustrating numbness. So hard to button a shirt, or just turn the pages of a book. I also find myself tripping a lot more now due to poor sense of foot placement. My doc said stay away from pain meds as they might make the numbness even worse.

REPLY
1 reply
phillyrich19 | @phillyrich19 | Feb 20, 2023
In reply to @johnbishop "Hello @phillyrich19, Welcome to Connect. You are not aging alone and there is a lot of..." + (show)
@johnbishop

Hello @phillyrich19, Welcome to Connect. You are not aging alone and there is a lot of hope out there. You just have to find it. I think a lot of people are unsympathetic because they don't know the feeling or lack of feeling. I actually found Connect because I also was told there are no treatments that help with the numb feeling. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

To answer your question about what you can do to help yourself - learn as much as you can about your condition and what treatments are available that offer some relief. Here are two sites that I think can get you started:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
--- Presentations & Videos: https://www.foundationforpn.org/living-well/fpn-media-center/.

Here are a few other discussions you might find helpful:
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
--- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
--- Ketogenic Diets and Pain: https://connect.mayoclinic.org/discussion/ketogenic-diets-and-pain/.

Do you do any hand exercises to help with playing the piano?

Jump to this post

Main issue in playing piano is to keep the hands relaxed. Hard to do when you have to focus extra hard just to play. I do squeeze a rubber ball for strength as I have also had bi lateral carpal tunnel surgeries. Also, learn to accept limitations.

REPLY
total99 | @total99 | Feb 20, 2023
In reply to @artscaping "Good evening @phillyrich19, I would like to join @johnbishop and @aaroncush in welcoming you to Connect...." + (show)
@artscaping

Good evening @phillyrich19, I would like to join @johnbishop and @aaroncush in welcoming you to Connect. And yes, there is no cure. And yes, the nagging symptoms of pain an discomfort do become more impactful and irritating. My diagnosis came to me from the skin punch biopsy method about 10 years ago.

Because I don't handle medications well it was not unusual to have to find alternative "weapons" to help me continue to be able to drive, type, exercise, stand in the kitchen to prepare meals, or do many other normal activities. My neurologist worked on some custom solutions with a lidocaine base. These medications are compiled in a specialty pharmacy and the ingredients can be changed and altered by your clinician as your situation evolves.

That worked for a while and then the SFN moved on and the numbness and pain increased. A nurse friend of mine introduced me to medical cannabis ...... where I found others to provide instructions in dosages and product selections. At this point, my pain numbness, and other symptoms are managed in two ways.

For daily living, my pain is controlled totally by medical cannabis, both tinctures, and topicals. For progressive relief that simply facilitates living, I have two sessions a week of MFR, myofascial release therapy. If you would like additional information about these two options, please just let me know and I will connect you.

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

Jump to this post

I would like informationon both.

REPLY
NJ Ed | @njed | Feb 22, 2023
In reply to @phillyrich19 "Thank you for your kind words. My main concern is not pain, as my pain is..." + (show)
@phillyrich19

Thank you for your kind words. My main concern is not pain, as my pain is manageable, it is the frustrating numbness. So hard to button a shirt, or just turn the pages of a book. I also find myself tripping a lot more now due to poor sense of foot placement. My doc said stay away from pain meds as they might make the numbness even worse.

Jump to this post

I also found myself tripping, in fact, flat on my face 3 times and finally decided that having a pancake face was not for me. I was in PT at the time and my therapist got my primary doc to prescribe AFO's which have worked out well. I deal with lots of numbness from toes to below the knees. Please write down the times you almost fall or trip and contact your primary doctor with the times on paper, that will mean a lot. Be safe and wish you the best and no matter what, not falling has to be a primary goal. Ed

REPLY
seanywonton | @seanywonton | Feb 22, 2023

Hey Rich, I also have SFN and I can totally relate to your feelings of frustration. Mine is idiopathic, and it has gotten really bad, progressively more painful over the 22 years I've had it (I'm 44 now). I feel like doctors all but say "there's nothing we can do for you." They want to help, but they can't, beyond giving a few medicines to take the edge off the pain.

I take gabepentin, at 1800 mg per day, and I also started taking Naltrexone, which is mostly prescribed to curb alcoholism but that's not what I take it for. It also can help for nerve pain. 50 mg a day what I take.

I think for SFN, 10-20 years from now, there will be much better treatments. Who knows, maybe sooner. I also think they'll have a lot better idea of why we have it if it's idiopathic, and I'm betting for a lot of those people, it's autoimmune. That's my best guess for what mine is from at the moment.

I don't mean to rain on anyone's parade but I'm really skeptical of that INF treatment. This is just my conjecture but I'll venture it: If something is either causing my nerves to not grow right, or actively attacking them, how the heck is a little more blood flow to the nerves going to fix that? I think the blood flow isn't the issue, at least not in my case. I really hope it helps anyone that tries it, but that's a lot of money to risk on a desperate chance.

One last thought, don't forget to treat your mind. My primary cause of needing constant talk therapy is pain. It's absolutely life changing. I'm still trying to figure out how to be happy through all this, and it's really challenging. I am lucky in a lot of ways...I'm still alive, I have 2 beautiful boys, and other good things. I would trade so much in my life to get rid of this pain, but not those kids.

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