Becky, As always you are there to add great advice!
It will be three years in July I have been fighting this fight with whatever it is I have. Both my diagnoses of Lyme and Fibromyalgia have been done on my symptoms. The Lyme by a doctor who was a microbiologist then studied under a doctor who specialized in Lyme disease in my hospital system, he is now in orthopedics and treats me for Bursitis in my right hip, but has been working with me for three years, so he is very familiar with my symptoms !
The Fibromyalgia diagnosis was done by a Rheumatologist in my hospital system. He was the last doctor I saw in my first six-month search as to what was and still is wrong with me! He gave me the diagnosis very flip int! It was at the end of my consolation of blood test testing for something else, Herpes and something else. It came when I asked him to ID what he thought I had. He just threw it out. Then said he doesn't deal with Fibromyalgia! Strange that Mayo and other medical institutions do !
So in a book I'm reading they mentioned ME/CFS and its symptoms. Then I went online and read more about it. You can throw a blanket over all three symptoms, and it's hard to distingué them.
I just know my symptoms have gotten worse over the last year.
One thing the information I've read talks about fatigue and how to deal with it! I've been working on understanding what my body is saying to me. I get a certain feeling when it tells me to stop what I am doing and rest! (this is what I didn't understand 10 days ago when I passed out on my feet, after getting a haircut, and after spending three hours in the ER trying to figure out my dizziness, headaches, and double vision,! My body just gave up on me!) It's happend twice before, but I was able to lay down immediately.
I now watch myself when I start to fade. I can usually last about two hours of work or other things when it hits me! I've been getting good nights sleep! Slept 8 1/2 hours last night. Have then taken a nap both in the AM and PM today.
Unfortunately I can't afford to go to Mayo in Scottsdale.
Going to rest up Thursday when I have my PCP appt. to try and pin him down as to what is going on with me.
As I said he has been understanding about trying to help with symptoms of the headaches and the insomnia with medication.
I'm going to go to the site you mentioned to see if they have advice.
Thanks again! You have always been helpful and understanding!