It just won't go away!

It'll be two years in December. Still got it. Got brave and went on some international business trips this fall, first time left the country since getting this in Thailand. Went to a city at high altitude and did fine though was worried since I've had some bad reactions. One one trip had a problem with chest pain but it went away after several hours.

Symptoms I still have: nerve pain, daily, all over at random spots/times. Head pressure still won't normalize. Occasional chest/abdominal pain. Wrinkled fingertips when cold or pressure applied. Headaches, muscle pain.

Been trying Gabapentin for the nerve pain- doesn't seem to help much if at all. Been on a nasal steroid to try to normalize ear pressure- also not helping. Might repeat some imaging soon.

Anyone out there with a story to share? It's a lonely condition, that's for sure. Connected with a friend of friend who had it and even found a dr in New York who's seen it before. He told her eventually it 'breaks away' from the nervous system- in her case under a year.