I am nearly 5 years in, still with a diagnosis of UCTD. Been taking Plaquenil for 3 years (with Pred for flares)- which has been a big help, but I'm still nowhere close to being the person I was before it all began. It's been an exhausting and frustrating time - and I know there are many who have traveled the same road. I've quit working and given up many of my energy consuming hobbies and projects, and lost friends to the fatigue and pain that make it hard to keep up with the simplest activities. Sometimes phone calls require too much energy.
It is frustrating to see the rheumy for 15 min. every 3 months. If you don't appear with severe symptoms on that day, it seems all the other days of feeling exhausted, fluish, feverish, and in too much pain to climb the stairs or make the bed, just don't count. That said, I do remain grateful that I haven't had serious problems with organ involvement.
Angelina - glad you have your dx and the support of your family. Embracenews - good luck to you - I hope you will find doctors who have the skills to sort things out.....soon!