Welcome to our family. I am so sorry to hear that you have been suffering for such a long time without any definite diagnosis or at least any concurrence from your doctors. I would like to say that your story is an unfamiliar one, but unfortunately for many of us, your story is very familiar.
One of the biggest hurdles we have to overcome is that of doctor's listening to us, taking us seriously, running appropriate tests, and prescribing appropriate treatment. Too often, doctors do not want to believe us when we tell them what is going on in our bodies and they do not want to treat the symptoms that are causing us so much grief. It is very unfortunate when our rheumatologists (the doctors who are supposed to know about auto-immune disorders) are the ones who are dismissing us.
I am glad to hear that your rheumy at least has started you on Plaquenil. But, I cannot understand how he could ignore the fact that you do need pain management. Also, almost every single one of us, with Lupus, also suffers from a co-existing disease, such as Fibromyalgia. The symptoms you describe do sound as if you may be dealing with two, maybe even three co-existing disorders.
It might be helpful for you to keep a journal of your symptoms and how they affect you. Take this journal with you the next time that you visit your rheumatologist. Insist that he give you the respect and the time to discuss your journal, to work, with you, on what tests should be run and what the tests and their results indicate, and what type of treatment program you should start that would help to alleviate ALL of your symptoms. Do not let him rush you, ignore you or dismmis you. Tell him that you are not leaving his office until he listens to you and answers your questions. You are in pain, you are ill and it is his sworn duty to assist you..that is what you are paying him to do!
In the meantime, we are here to help you, answer questions, provide you with understanding and support, and to just be here when you need us. I wish you the very best!
Peace and Blessings
Look For The Good and Praise It!