Jon, welcome! We do know your frustrations. Fibro mimics many other illnesses. Check out the fibro 101 thread...the second thread on the forum. There are links to a lot of good info about fibromyalgia. One of the links is called, "What Else Could It Be?" I think that will interest you greatly.
Good doctors will do testing to rule out lupus, Lyme, Ms, and others before giving the diagnosis of fibromyalgia. There is a tender point test they do, too, that helps diagnose fibro, since there is no lab test for fibro. It's basically a guessing game but that is all medical science knows about it yet.
We have many on here from the midwest with fibromyalgia...more so than the northwest area so actually this miserable illness is all over the place!
My advice to you is to find a good rheumatologist. Ask, before you make an appointment, to be sure they treat fibromyalgia, if it turns out that is what she truly has. Look for a board certified rheumy. They should run her through a battery of tests to rule out these other illnesses that were in the link I sent you to. Once these illnesses are ruled out and a tender point test is done, the diagnosis of fibromyalgia is given.
I hope Sarah will come on and ask some questions. We have a wonderful group of people here that have good ideas as to how to live a full and enjoyable life with fibromyalgia. She shouldn't hesitate to ask questions because that's why we are here.
I'm glad you found us and I hope you get the correct diagnosis soon. Hope to hear from you soon!
Welcome to our family. I am sorry that your girlfriend is having so much illness and that she hasn't been able to find the right doctor for her. You are right, fibro is a devatating illness that is very real and those of us here know that all too well.
Unfortunately, I have found that there are too many doctors out there who are all too willing to jump on the fibro bandwagon. I believe that there are a great many people out there who have been mis-diganosed. It sounds like your girlfriend is one of them. Fibro does not run in cycles, other things like MS do however.
Let me correct you on one thing. It is very possible for children to have fibro. I have had it since I was 4 and am now 56. Some symptoms of juvenile firbro are fatigue and continuiously complaining about sore muscles and joints. Most doctors sluff this off as childhood growing pains.
I hope you both find some help and some relief for her. It can be just as difficult for those who love the one suffering as it is for the one who is suffering.