Linn,
WOW! I cannot believe what I am hearing from you. I certainly am not glad you have this, but I am sooo glad to have someone who understands this and someone to talk about this with! I had alot of tonsil infections through out childhood. So when this pain, swelling etc started, It felt like it was in my throat and ear, I automatically thought tonsils. I have had a few infections over the years and do have large cryptic tonsils. But I have been to three to four ENT's many times---they too have never said that there was any severe infection, as a matter of fact one of them, said many times, that there is NO infection! Just like you, I was so disappointed, I felt as if that would be alot simpler to deal with.
I have had to deal with many stressors through out my lifetime and truly believe that they way my body handles stress has alot to do with this for me, and I also see it show up at times of a cold, flu, etc. I will say that it has actually been two years since my last attack until last week! I was severely upset that this was back, but am trying to settle myself into dealing with this as it comes. I do work everyday and have three children ages 17, 16 , and 14. So you can imagine! BUT again, I am soo happy that I have found you, it is really a breath of fresh air. And congrats. on becoming an aunt again, enjoy!
I was first given this diagnosis in 2007---thats when I truly began learning about all this, after years of wondering what was going on and alot of time of panic and fear. At least it has a name now, that's something. Just as you have made reference to, we don't have a choice about everything in life, but we can choose how we deal and react to things.
No matter how hard it may be.
You are in my prayers, please continue to check in and respond, it's a joy.
Suzie