I know what you mean. I have several medical issues including FM and lupus. It took years of doctors and many tests to figure out what I have (what caused all the pain and exhaustion) and then to get the appropriate medical treatment. It seems that as soon as though a medicine starts to work, my body oveerides it, and I am back to the drawing board again.
I do have insurance through my husband's job (thank the Lord) but I have had to leave my job after 22 years of working, and it has made finances very difficult for us. The disability insurnace people have dragged their feet, and I am still waiting to hear if they will approve me or not. I pray so!
Any type of chronic problem is expensive. There are a lot of people who have it a lot worse than I do, and I am thankful for everything adn everyone I have. Having a disability really lets you know who are really your friends. They are the ones who stick around, and I am very careful not to complain around them. They can just tell if I am having a rough day.
Iwill keep you all in my prayers, that better days are ahead, and that you will not need a lot more tests or expenses. I know how it is.