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?

Hi @phillyrich19 , yes it is very frustrating. Do you know the underlying cause of your SFN? Things like diabetes, B-vitamin problems, chemotherapy, and autoimmune diseases can all cause SFN, and treating the cause can slow or stop progression. If not, do you notice anything that specifically makes your symptoms worse or makes your symptoms better? For me, I accidentally learned steroids will 100% stop my pain but their use is contradicted because of another health issue. I now take supplements to control inflammation which does lower the pain somewhat.

There is a Reddit subreddit on small fiber neuropathy that is another avenue for community. Hopefully something I said helps.

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

Hi , hope you find something that works for you. First, find out why you have it. If it is diabetic then keep your numbers in line to slow down the process. Second, remember we are all individuals, some things might work for you that don't work for others. Start with simple thing, proper fitting clothes, OTC drugs,good habits like sleeping regularly. Third, remember there is no cure so try to get as much relief as possible using "solutions" found on this site. Be careful of scams!!! Best of luck to you.

What supplements? Please share!!!

I did post a mostly up to date list in this comment: https://connect.mayoclinic.org/comment/798936/

I cannot stress enough the importance of discussing taking any supplements with your doctor.

I got in contact with Loma Linda Medical University they have a cutting edge as they describe it treatment it's called INF I believe I called and they set me up with a free Zoom consultation with one of their doctors they explained it to me they do a lot of testing they do a lot of food allergy and testing for inflammation they I don't they said that I could start out with a 12-day I believe it was program it costs over $3,000 which I don't have but I may be able to raise my neuropathy is probably in the middle stages I take 1800 mg of Gabapentin every day and I still wake up very stiff and achy when it's time to take my medicine I can really feel the neuropathy aches and pains in my legs and hip and back and feet I walk about 2 to 4,000 steps per day but I I can't do too much more than that where we live there's no sidewalks and I have to take care of my wife and I can't just take two or three hours to go in town and go for walks I get most of my walking and when I go to Kroger's or Walmart

I have my first session Monday. There is no way I can afford two sessions a week. Do you have insurance covering this? I’m hoping to get results w one a week. Even this is a stretch for me on a teacher salary.

Good afternoon @annelise, Congratulations…..I hope your session is productive for you. As I recall, the first few sessions when the therapist was uncovering the fascia restrictions can be discomforting. The reward is that you will feel like a new person the next morning when everything settles down.

Regarding the $$$$$. We thought my insurance would cover it because my therapist is also a licensed OT. Generally, insurance companies will be more inclined to support treatments that prepare folks to return to work. However, at 70, they were not so inclined.

Here’s how we worked it out. At the time I went to two therapists, the new one was not an Expert level. So, my therapist wrote off the training part and I paid the same amount twice a week as it would have been for just one. At the time, we had two homes. Mine was on a mountain top with no medical services except for firemen. The closest MD was 45 miles away down the mountain. So, it was time to sell the mountain home. I tucked away enough money to cover the cost of twice a week.

That was 5 years ago and she has not raised the price at all. She is quite amazing…..and extremely generous and caring.

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

Thank you no house to sell but maybe I can pick up some tutoring. 😊