Yesterday I spent most of the day at DUKE hospital, with a specialist.
I now have an official diagnosis of Fibromyalgia, and am enrolling in the study that uses CBT and sleep research.
Some of you know that I have had an ongoing battle with some very scary symptoms. I have been to so many doctors and have heard the same thing over and over again....they just can't figure out what's going ON with me.
This appointment was TOTALLY different. He took the time to truly LISTEN to my story. He kept going back to be sure he understood the Chronology. Then he began to ask me questions. Not *have you ever had migraines?* but *WHEN did you start having Migraines?*. He made reference to things that not even my closest friends know about me, and then he said he knew I had a certain kind of biological makeup, a distinct wiring harness, as it were.
He said he almost hates to even USE the word Fibromyalgia because it has such awful connotations. He is one of the foremost experts in the field and knows a LOT about how his medical colleagues have dealt with the *disease*.
He doesn't believe it is a disease condition. He feels that it is a biology. That all of us have this fatigue to some degree, some cognitive fog, some aches and pains due to age and wear and tear...but that people with Fibromyalgia are wired in such a way that everything is magnified, amplified, and ALWAYS on. The pain receptors just keep firing, even though the trigger may be long gone. There is no rest because the brain just runs at TOP SPEED all the time and never has a chance to rest and recover. We have extreme reactions to insect bites, to changes in weather or barometric pressure, to medications in small amounts, to sounds and smells and tastes that other people would barely notice. We're always THINKING, and often about dozens of things at once.
We're just like everybody else, only MORE so.
Which, oddly enough, is also the way I've often described my autistic children.
The inflammation is real. My body is always rushing fluid to the scene of a perceived emergency because the pain receptors really are firing.
So. All I have to do to get better is to change my biology. Just change my MIND, as it were.
Please join me here as I share this journey. Perhaps we can all learn something NEW together.