It has been 4 years since all of my medical problems started and I still don't have an answer. My name is Nicole, I am a senior in high school and in recent months it has gotten so bad that I am hardly able to get through a day of school, let alone any sports practice. I am only 18 and I just want my life back.
The main symptom throughout the four years has been extreme fatigue. At 14 yrs old, I lost quite a bit of weight for my size (lost 15 pounds and was down to 120 lbs. on a 5'6" frame). I ate all the time, but gained nothing. I had terrible headaches and earaches and joint pain (no inflammation). I was tested for mono, west nile, anemia, and a reumetelogical panal, but they all came back normal. The fatigue persisted, but the other symptoms came and went in sperts throughout the months.
A year and a half later, I was diagnosed with west nile, minocycline-induced lupus (MIL), and they found a large fibro-dysplasia tumor taking up over 50% of my right tibia. I was told that the west nile was causing the fatigue and headaches, and the MIL was causing the joint pain, and that some of the joint pain may have been from the tumor because my body was compensating for the lost strength. I went off the minocycline (that I was taking for acne), and had surgery to remove the tumor because it had gotten so painful that no painkiller would touch the pain and we wanted to make sure it wasn't a risk to break anymore.
The symptoms subsided for about a month after the surgery, but then came right back and began to get even worse. I am now 18 and having a less-than-perfect senior year. After I got done with softball this past fall I completely crashed for nearly a month. I've had to go in a take naps in the guidance councelor's room during classes because I can't make it. My fatigue is extreme and almost constant. My joint and bone pain is intermitten, along with headaches. My emotions have gone haywire lately because I'm too tired to deal with everything. No doctor takes me seriously because I'm such a perky person and am one to tend to hide the fact that I am in pain. I've seen many doctors and they always come to the same conclusion of "something is wrong with you, but I don't know what, so I'll send you somewhere else". My latest doctor was an internist who now wants to send me to a reumetologist because my blood work just recently showed positive histone anti-bodies. My internist said it was because of the minocycline induced lupus, but I went off of the minocycline nearly 18 months ago, which doesn't fit.
I have no idea where to go from here because doctors keep shoving me from one to the next without an answer. I can't even look at colleges right now because I'm too tired, and I don't even want to think about track come spring. I've had a lot of tests done anything from 24-hour cortisol levels to blood work panals. I used to be very active, and now I have a hard time even getting out of bed. I just need advice or encouragement, because I'm tired of doing the "let's try this for 6 weeks" and see if it helps any. It's been almost four years and nothing to show for it, and I'm getting discouraged.