I too am new to this group. However I am not new to the world of neuropathy. Your story really resonated with me. For the past eight years, I have gone from an active, strong and healthy person, to one whose daily life is impacted by small-fiber polyneuropathy. I am a nurse, and it took me eight long years to finally get this diagnosis. I was initially diagnosed with fibromyalgia, but I've known this whole time that that diagnosis just wasn't right.

I too was turned down by Mayo Clinic early in the process. I too was devastated. I felt like it was my last hope, and the rejection seemed so final. That was over seven years ago.

My best advice with a chronic, progressive illness like this is to be your own advocate. No one will care about your story as much as you do, even the best doctors in the country. That sounds harsh, but I know this because I was a specialist in my field, before I had to retire early. My patients that did best had accepted their situation, and had already researched and sought out solutions that would work for them. I talked to them for 15-30 minutes every few weeks, but they lived with it every single day.

Long story short, I have made many adaptations in my home and personal life to deal with the physical limitations. Like you, I love to hike. I've found a women's group that has several compromised members, and will go slow and stop as much as needed. I really resisted swimming for exercise (ugh, the chorine, the tight swimsuits, being wet and drippy....). However, I finally gave in, and have been swimming (with a mask and snorkel) for the past year. Not what I want to be doing, but I can no longer do what I want to do, right?

I have stepstools and benches around my house and yard so I can sit for chores. I have stopped cooking, and no longer feel guilty about it. Prepared food is just fine. It's only food. I have changed the type of luggage I use. I have no problem using a cane when I need it. Etc etc.

It took me a long, long time to reach this acceptance. However I can say now that most days are happy, I am mostly content, and life is good. I see all my doctors, but no longer expect them to solve my problems. I take all the medication that I need in order to minimize my suffering. Lyrica makes me so stupid, so I just tell people up front that I have trouble with memory and sharpness. I take naps throughout the day.

Most people who see me have no idea I have this illness. It's an invisible disability.

I really, truly give thanks every day for the things I can do, and try to graciously accept my new normal.

Hope this helps. You are definitely not alone in this!

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