Not to sound rude or anything but how old are you? When my doctors first suspected anything I was 15. I went through the exact same thing as you. My lupus tier would come back negitive then a few would peak and become positive with the next test. My ANA went all over the place. I would come to my regular doctor with my rash enflamed but then my levels would change and by the time I got to the rheumatolagist the flare had ended and they couldn't make it out.
As far as being diagnoised with fibro, it is a new condition that is still not fully understood. Its possible You have been misdiagnosed. It is possible that you have lupus and it is causing the same pain pattern as fibro. It is also fairly common for fibro to go hand in hand with other diseases or injury. So it is possible to have both, like me :), which makes the diagnosis even more difficult for your doctor.
One thing I learned is that they are very hesitant to make a firm diagnosis untill they have explored all possibilities. This is even more true in young patients as lupus rarely shows up before ones 20's.
You CAN have a negative ANA titer and still meet the criteria for Lupus diagnosis. Get on the Lupus dot org site and look up the symptoms, and I think you have to be positive for four of the symptoms to be diagnosed with Lupus. If your titer's are 1:40 or above, depending on the lab process used, you are considered positive by the lab....but the doctor says many people can have a low positive (1:40) and not have Lupus. So, with that knowledge, you just go with the symptoms, instead of the lab results. You don't mention if being in the sunshine (winter or summer doesn't matter) makes you sleepy the next day. The day before easter, I washed my screens for 1.5 to 2 hours in the sunshine. I was fine all day, went to bed around 10 p.m. (still perky as heck) and didn't wake up again till the day after Easter. I completely missed Easter. Sunshine does that to most Lupus patients. I don't know what types of other autoimmune illnesses will make people allergic to the sunshine that way.
As for whether the Lupus is internal or not, there are different types of Lupus. One is Discoid Lupus, which affects your skin only. Usually that leads into Systemic (internal) lupus Erythematosis (SLE) later on in life. SLE affects joints and organs. Kidneys and Liver seem to be affected more often with SLE. If the doc was checking your lab results for indications of INTERNAL LUPUS, he was looking for kidney damage or malfunction, liver malfunction, thickened blood, etc. There is also one that I just found out about in June (cause I was diagnosed with it), and it's called Subacute Cutaneous Lupus Erythematosis (SCLE), which, from what I've read, is milder than the SLE, and affects skin and joints, but rarely the internal organs. There is also one that is MEDICATION INDUCED LUPUS. basically, if you are taking a certain medication that gives you all the symptoms of Lupus, you just need to be off those medications for about 6-9 months and you will go back to normal. do some research on the internet on Lupus. The Lupus dot org site is a good one, and there is Lupus Foundation of America. I get a magazine subscription from one of them called Lupus Now, and it's very, very informative. I have learned a lot from that. One of the things I learned is that it doesn't matter what type of UV rays you are exposed to, whether it's from sunshine or flourescent lights, it CAN make your symptoms much worse (some Lupus victims are not affected by the sunshine at all). The butterfly rash may appear more often after being in the sun...and also around your mentstral cycle. Mark on the calendar when you have that rash, and see if it appears around the same time each month.
One more thing, YOU ARE THE PATIENT, not your mom. She is an awesome supporter to have on your side, but you are the patient, so YOU TELL the doctor you want a copy of all lab results. Then when you get the copies home, get onto google or some other search site and type in the name of the lab test that is out of wack and you'll find TONS of info on this stuff. That's what I do. The doctor HAS TO give you copies of your lab results if you ask for them.
If the sunshine affects you in any way then the next time the doctor wants to do a lab test of your ANA titers, then you tell him you'll have to get the blood drawn on a different day "cause you're busy". then, plan which day you'll be able to go to the lab, and the day BEFORE, you spend a couple hours or more in the sunshine. Then the next day, your mom can take you to the lab no matter how sleepy you are, and you'll find the ANA titers will be much higher, making you POSITIVE. That's only if the sunshine makes a difference in your symptoms. Never hurts to try the sun thing even if you don't get tired from the sun.
The doctors will sometimes diagnose a person with Fibromyalgia when there are Lupus symptoms but no positive ANA result. It makes no sense to me, but they are blanketing people with that diagnosis. Look that up also, and you can test yourself to see if you match those symptoms. The doc tried to tell me I had it also, but when he put pressure on the "pressure test points" it felt GOOD, and didn't hurt at all. So he said, NO you don't have Fibro. I have the butterfly rash, joint pain and damage, and the fatigue from the sun. I have SJOGRENS SYNDROME, AUTOIMMUNE HEP, AND SCLE. Now I'm on Plaquenil (anti-malaria drug), and Methotrexate and Celebrex. They are all helping me immensely.
Let us know what you find out. We are always interested. Take care.
Wow, both you guys were really helpful, thank you so much.
I got my test results back and it was positive for Lupus. I'm have a CT scan done friday, and I'm going to the Cardiologist in February for my chest pain.
The doctor said they don't have numbers for ANA titers, so my mom misread it, which means I don't know how high or low my ANA titer is.
zmom, when you explained sleeping for so long, I remembered when I went to school (I'm now homeschooled because I was always sick) and I was outside, i would go home and sleep from the moment I got home from school to the very next day and most of the time I'd be late for school. And during the summers if I played outside a lot I'd go inside and sleep from that moment all the way to the next MID day. I've slept an entire day from it before.
I get the butterfly rash too from being in the cold or sun, and I get a REALLY horrible flare up when it's real sunny out. When that happens I get a fever, I ache all over the place and I get a migraine and sleep for HOURS. That was the main reason my mom thought it was lupus.
Btw Dante's Mom, I'm 17, going to be 18 in June. My symptoms have progressively gotten worse within the past few years. My mom thinks I've had lupus since I was little because I would get the rash even back then and I would always feel sick, but it wasn't half as bad as it is now.