Hello @lisadog33 I am glad to see that you are reaching out for answers. That is an important first step of being your own advocate and hopefully finding some answers that will help you. It's really great to hear that your insurance company helped you find another opinion. A lot of people with small fiber neuropathy also have other autoimmune system issues. I have idiopathic small fiber neuropathy in both legs and feet. I also have polymyalgia rheumatica (PMR) in the shoulders, arms, and hands. The PMR was in remission for about six years until this past August. The magic pill, prednisone, keeps it under control but I'm in the process of tapering off of the drug which I know takes time - 3 years first time around.

I recently watched a video that may offer some help/advice:
"What happens when you have a disease doctors can't diagnose"
TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome

Another recommendation that I have seen recently for people with multiple symptoms is to keep a log and write down everything - type of pain, where, when, how bad on a scale of 1 to 10, etc.. This will help you better describe them to your doctors and ask them more questions. Don't settle for an I don't know answer. Keep pushing because in the end you are your best advocate. It's not that the doctors don't care, it's just that you know you the best.

I'm hoping some others will jump in like Brie (@brie87144) who has some great advice.

John