Yes, it is scary, and your inner strength is really tested by how quickly a pretty decent day, filled with cautious optimism, can end up with so much pain that I am digging through my meds, trying to find something to help! One thing that this forum has shown me in the short time I’ve been a member is that we’re all fighting the same battle.
I am 61, and had done all the right things to prepare for an excellent old age until this neuropathy hit me. I won’t bore you with all the things I’ve given up. My diagnosis is length-dependent small fiber neuropathy, most like genetic, as my sister has the same symptoms.
Because I am an RN, the best thing for me has been to keep all my medical records, and note any trends. Most importantly for me is having gained the trust of my physicians to tailor my daily meds to my needs. I see a pain doctor, and take a small dose of Percocet, 7.5 mg 1/2 tab four times daily as needed. Baclofen ( muscle relaxant) has become more useful. Gabapentin made me too drowsy. Lyrica helped but I lost my intelligence! I’m now on Tegretol, and I think it will work, once we get the dose worked out. I’m willing to try any cream, supplement, patch, socks, etc and that is how I’ve found what works for me.
My life is pretty good. Most people don’t realize I have this “invisible illness”. Doctors are still learning about it. My physical therapist is learning along with me. It definitely forces you to learn your own inner strength, but there are medications out there to ease your suffering!