Originally Posted by JulieJem

I'm newly diagnosed with TOS after a long, fun-filled journey as a "medical mystery". I've been lurking here for a while and wanted to thank you all for sharing your knowledge and stories. It has meant a lot to me to know I'm not alone in dealing with this stupid condition.

A little background info: I injured myself 3 years ago in a power yoga class. Had intermittent neck and shoulder pain with a tingling pain in my arm for a year and when the chiropractor didn't help, I got an MRI and EMG and they sent me to pain management and physical therapy. After cortisone shots, PT, and a nerve lesioning failed to stop the pain from escalating, I made the round of specialists to try to figure out what was happening. Finally I got referred to Dr Donahue at MGH and hallelujah, he confirmed it. I have a Botox shot scheduled for Tuesday but am not very hopeful that it will help. The pain has gotten so debilitating that, even with narcotic painkillers and muscle relaxants, I can't stand or walk with my arm in a sling for more than 15-30 min and can't lift or carry anything.

As a stay at home mom of a 4- and 7 year old, it's been a difficult summer but the beginning of school has me facing a new challenge. What do I tell people is wrong with me? It's hard for me to explain this tongue twister condition to people who saw me 3 months ago when I was still somewhat able to pass as healthy. TOS means nothing to them, brachial plexus needs an anatomy lesson, pinched nerve doesn't seem to convey the impact.

How do you explain your condition to casual friends and acquaintances?