The maddening problem of SFN

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?

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

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?

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

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.