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Thread: Looking for answers

  1. #1
    Join Date
    Jun 2004
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    Default Looking for answers

    Hi everyone! My name is Danielle, I'm 18 and am trying to figure out what is wrong with me. I did some research on my symptoms and among many other things, Lupus seemed like a possibility, so I thought I'd get some input.

    I've been seeing a lot of doctors since I was young. I started having severe chronic migraines in middle school. During my sophomore year in high school I woke up one mornign terribly sick. Weak and vomiting and didn't get well again for several months. I was exhausted, slept all the time, had low blood pressure, nauseous, dizzy, achy. After a few months I started feeling better, but was still nauseous and had bad stomach cramps. This year I was diagnosed with endometriosis and had a lap done to remove several spots of endo and adhesions. I thought things would get better, but they haven't.

    Since my surgery I've been exhausted. No matter how much I sleep I never feel rested. I've been very achy, with lots of joint pain, and just overall don't feel well. I have shooting pains in my hips and knees and my legs feel like all the muscles are tightened and can't relax and sometimes get kind of numb and tingly. I always get headaches and eye pain. I thought maybe fibromyalgia or arthritis or maybe chronic fatigue syndrome, but some new symptoms made me look closer into lupus. I've become extremely sun sensitive, burning wayyyy easier and worse than I ever used to (going from spending a day in the sun with no sunscreen and tanning to applying spf 30 3 times and burning). At a recent trip to the beach, I developed a slight burn on my back and broke out into a rash of sorts. I've also been having some occassionaly chest pain, especially at nights and certain ways i move (lifting something, stooping down. etc.) These last two things made me curious about lupus. I don't have a face rash, but I've read that doesn't have to be present for lupus...

    I feel like a hypochondriac. Every day it seems like there is a new symptom and a lot of people including my doctors don't believe me and brush me off. But I KNOW my body and I know I don't feel right, so I'm just trying to research every possibility and was wondering if this sounded like lupus to anyone.

    Thanks for your help!

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Danielle;
    Yes, it does sound as if you might be presenting symptoms of Lupus or at least of some type of auto-immune disorder. I would suggest that you and your parents ask to be tested by a rheumatologist. Family doctors seem to have a reputation for not believing our symptoms and for brushing us off. Especially when someone as young as you complains of the many symptoms we suffer due to LUPUS. However, you are at the most common age for development of the disease.
    If you cannot get a rheumatologist right away, then go to an internal medicine doctor to start the testing process and then insist that you be treated by a rheumatologist.
    The process for testing an auto-immune disease is a long and drawn out affair and can take as long as a year for a definate diagnosis. Therefore, it is important that you insist on starting the testing process early so that treatment can begin early.
    Continue to learn as much as you can about your symptoms and keep your parents involved! My daughter was diagnosed with LUPUS at age 19 after suffering several years with many symptoms (hives, achy joints, fatigue, unexplained fevers, overall malaise). You and your parents must be proactive with your doctors and must insist that you be taken seriously and that you be tested and treated accordingly.
    Let me know how things are going!!
    Best of Luck
    Also, insist that you be taken seriously

  3. #3
    Join Date
    Jan 2004
    Pacific Northwest
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    As always, I asy Amen! to what Saysusie says - especially about getting the right doc. Not to knock family docs, but they ignored my anemia and other blood symptoms for 8 months...... I still wonder if my kindeys would be in better shape if we had known sooner and started treatment earlier.
    our symptoms can really help you and your docs.

    I don't have the butterfly facial rash, mostly just kidney problems, but my sister does get the rashes. We all have different symptoms, and several autoimmune diseases overlap in their symptoms, so a Rheumatologist can be super helpful in sorting that out. Also, as many have said, keeping a journal of your symptoms can help you and your doc.

    Good luck! I'll be thinking of you.


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