Hi - I have had lupus since 1996. It began with symptoms similar to the ones you are experiencing now, except my joint pain was severe. I was placed on a high dose of steroids, gained about 50 pounds and went into a depression that ruined my marriage. As the years have passed, I have tolerated various levels of flares that have involved skin rashes and joint swellings/pain. To be honest, I didn't really think I was ever going to get much sicker. WRONG! A few months ago I was under a great deal of long term stress and was not taking proper care of myself. I ended up in the hospital for 6 days with bilateral pleural and pericardial effusion (inflamation of the lining around the lungs and heart). I was in so much pain that I had to sleep sitting up and was having difficulty breathing. I couldn't believe how sick I was! Now it has been almost 3 months since I was in the hospital and I am just barely recovering. I am on a weekly dose of chemotherapy (Methotrexate), steroids, pain killers and am also currently battling a severe depression.
I am not telling you all of this to scare you. You were asking for advice about lupus....Take this illness very seriously! It is not difficult to control if you take proper care of yourself and seek treatment when your symptoms are mild. Don't let things get out of control! Once my organs were involved I had a major reality check... Also, don't be afraid to ask for help and support. Don't be stubborn like I was and downplay the severity of this disease. There are a lot of effective medications out there, just find the right combo that works for you and your lifestyle.
Oh, and another lesson I have learned over time - find a good doctor that you trust and takes the time to listen to you and support your needs. It's worth the hassle of changing docs to find a good one. I stayed with the same rheumatologist for years that I dreaded going to see. I am much happier now that I have replaced her with another doc.
I hope this helps you in some way. Good luck and be patient with us here on this website, a lot of us don't have much energy to spare. Feel free to write me back. It may take me a few days but I'll answer.