Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists - it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee - I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound - he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection - it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story - I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is - I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening ... and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone ...

Karen