Good afternoon *warm hugg* It sure is good to hear from you. I am terribly sorry you are in so much pain. I wish they could at least ease your discomfort while they are investigating. It doesn't seem fair you have to endure thought all the uncertainty while in so much pain.
I wish I knew more about auto-immune diseases. I have had a constant low grade fever for over a year now but the endocrinologist and even the disease specialist were never able to find the cause. When my spine began progressing rapidly they started veering towards the genetic side of things. I do not know about auto immune disease, but I hope with all my heart they can get to the bottom of things. Surely you must be exhausted by now.
Not knowing, for me at least, is the hardest part. When your body is detioriating, and the very serious symptoms keep progressing it is hard to not be afraid. Watching it happen to your own body and only able to call it "It" pushes sanity to the very brink. I wish I had something useful to offer you in the way of advise, but I don't. All I do is write down how I feel about the frustrations and write down new symptoms / progressed symptoms as they occur. I find that as so much happens daily I tend to forget to tell my doctors what has happened. ...sometimes I feel so disconnected when I go in, it is hard to even pay attention to what they are all doing and testing for. The diary helps me to stay grounded somewhat. To talk about the progression with my diary without seeing worried faces or confused and frightened stares helps. If only a little bit.
I pray they find out what is happening to you. It isn't fair you have such heavy burden on your shoulders. With so much pain and such long days surly you are exhausted to your very core. I do hope you can find a few moment where you can rest and not think of your body. If only for a moment.
We all care for you so much. Your so strong and courageous. PLease, stay strong. Know you are in our hearts and prayers.
*warm hugg* dani