Hello @bunnynumbfeet, Welcome to Connect. I really never had pain with my idiopathic small fiber PN but was looking for something that might slow or stop the progression. I think the 525 protocol has helped slowed and possibly stopped the progression of my neuropathy but it's subjective on my part since I haven't had a followup nerve conduction study and I have never had a skin punch biopsy to corroberate that it's better now. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/

I think the folks who benefit the most from the 525 protocol are the ones who have a lot of associated pain and are on medications for the neuropathy pain. A member of the Facebook group shared how it helped them in another discussion here - https://connect.mayoclinic.org/comment/611196/

I have balance issues also. Some I think is related to my neuropathy and some to my age and other factors. I have been working on my balance problems with exercise to see if I can improve it. Here's a discussion you may find helpful -- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Have you tried any exercises or physical therapy to help your balance problem?

Hello @bunnynumbfeet, I don’t take all of the supplements in Protocol 525 due to drug interactions I have with a couple of the supplements. However, I do think the supplements along with a strict change in diet have reduced the sharp nerve pain I used to get. My overall muscle pain and numbness, however, continues to get worse. My neuropathy is due to autoimmune diseases, one of my medications, and liver disease (caused by one of my autoimmune diseases).

I joined Connect after I did a search for numbness and nerve pain, and have gathered a wealth of helpful information since. As the highly knowledgeable and ever helpful @johnbishop says, I too handle my numbness by pushing myself to walk and do exercises. These include several exercises I’ve found posted on Connect that can be done while cooking or other hanging around, watching TV, etc. Balancing exercises, standing on one foot, doing steps, walking backwards. All of this helps me to become accustomed to my numbness. I don’t think my numbness will ever go away and seems to just keep getting worse, so I believe that the best way to deal with it is to face it head on and challenge myself to get over being nervous about it, know my limitations, and practice, practice, practice.

As John mentioned, maybe a visit to a physical therapist would be beneficial. I’ve had occupational therapy for hand issues in the past. So, I do the exercises I learned from that in order to maintain stronger hand control. I suffer also from tremors, so these exercises are helpful for this as well.

Hang in there! I started becoming numb a year ago…starting in my abdomen, after liver transplant surgery. It moved down my right leg, feet, up my left leg, and now my arms and hands. It is definitely scary and unnerving. We’re all different, so you’ll need to find what works for you. But, Connect patients have a wealth of experiences to share, some of which you will hopefully find helpful.