Hi,
I had no clue I had lupus when mine started (about 19 years ago) but from what I remember my first symptoms were: extreme fatigue, muscle aches and pains, migrating joint pains and inflammation (my right ankle became severely swollen, I couldnt even stand on my foot); malar rash, other rashes that came & went; some paresthesias (nerve symptoms), an overall sense of feeling ill & sluggish; I became depressed and since I coulnd move around, had gained weight as well. I also had hair thinning, it was falling out alot but I did not have any actual bald spots. I also got hives for what seemed no reason, sudden nausea and other things I can't remember. I had no insurance so for many symptoms I waited a long time, then started racking up some office visits & medical bills on my credit cards. For almost a year, I went to a podiatrist every week and had ankle injections, water therapy, heat therapy, ultrasound therapy, he gave me various medication samples...that all costed more than I was even making per week. He just said it was synovitis and it seemed like he felt bad but he was at a loss as to what was going on & why nothing was helping. So I racked up my cards over the years going to different docs a few times for different symptoms until I could afford it no more. Even when I had a foot x-ray, I told the tech I could not afford much, so she did the best to do one x-ray that might show the most info. Several years later I borrowed some money to see a Dermatologist due to a severe rash on my face that I thought might be skin cancer or something. He was the first doc to ever ask If I had other symptoms and I said yes to almost all that he asked about. I had a few blood tests and had an eleveated ANA titer at that time. He thought I probably had lupus (which I had never heard of). But again, I couldnt afford to see a Rheum, as he suggested I should do, so I never went. I just suffered flares over the years of all sorts of symtpoms.
I should mention in the beginning I was working outside in the sun all day; and I also took a vacation to Aruba where, even though I wore the highest SPF sunblock they had, my entire body was severely burnt. And not long after I began feeling run down and got flare. Finally in late '02 or early '03 I foudn a job with health insurance and a co-worker got me an appt. with her Rheum. I explained to him all that happened over the years and he has diagnosed me with Lupus (though he's also run many bloodtests over these past several years). He also diagnosed me with Fibromyalgia and other unrelated things that happened with my spine.