Hey Veronica... I totally hear you!!! Can't say I have the answers but... I understand what you are talking about.
Today, I had to carry some boxes down stairs. They weren't overly heavy but by the third trip - I was getting tired and I had to take a break - that's one thing I find SO maddening with Lupus - the lack of energy and how quickly the little bit I have can be eaten up by the simplest of chores. In no time, the arthritis in my knees was acting up - I was so stiff and sore and from what - a few trips up and down my stairs... that's the only thing I had done.
As for my tongue - I get "sore mouth" from time to time. It is very sensitive and I have a hard time eating things like toast. I don't know if it feels swollen exactly but it is painful.
Hope some of this helps you out!!!