Sorry to hear things are so rough for you right now. I have, or had many of your symptoms. The usual Lupus stuff, plus all the odd CNS type symptoms. I was diagnosed with SLE five years ago. About a year and a half ago, I started having twitching, numbness and tingling on my right side, electric shock type pain, tremors, and falls. I also had symptoms of Optic Neuritis. All of this lead me to being diagnosed with Multiple Sclerosis last year.
I'm not saying you have MS. But I am suggesting that if you do have CNS involvement from the Lupus, the treatment I had could help you. I had two rounds of low dose IV Methylprednisone treatments done, and the worst of my CNS related symptoms have improved drastically. Ask your rheumo if he/she thinks this could help you. Or even better, see a neurologist and get their opinion. If the problems with your tongue or throat feel like they are making it hard to breathe, please seek medical help ASAP. I hope you can find the answers you need in order to deal with this. I'm sure other members will be along shortly with more ideas for you.