I have this! Diagnosed about 2 years ago after another 2 years of visits to rheumatologist, head of the Lupus program at our local Ivy League university medical school.
It started with cutaneous Lupus which remitted with hydroxychloroquine, still taking it. Recently dosage was increased and that helped a lot.
Not fond of that, but it worked for me.
Nobody I know ever heard of it and they seem to think I made it up! Now I don't speak of it, just live my life grateful to be relatively symptom-free.
My best wishes to you! I hope you have a great rheumatologist whom you trust. That's key!