Hello and Welcome CandyPants!
What you describe is not unfamiliar to many of us. I have some of the symptoms you spoke about; aching bones and burning skin. My symptoms are not due to my Lupus, but due to the fact that I also have Fibromyalgia. Perhaps you can mention this possibility to your doctors to see if you may also be suffering symptoms of this (or another) overlapping illness. Unfortunately, once we develop on auto-immune/connective tissue disease, we are prone to developing others and they overlap one another.
Please let us know what your doctor says. I wish you the very best.
Peace and Blessings
Look For The Good and Praise It!