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Thread: New and worried

  1. #1
    Join Date
    Apr 2009
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    Default New and worried

    Hey everyone! I'm new here, and just wanted to share what I'm going through with you guys. My aunt has the skin type of lupus, but that's the only person in my family with any history.

    I'm a 19-year-old college student. I haven't been diagnosed with lupus, but I've known something's been wrong with me for a while. First, my doctor thought I had PCOS, then possibly Cushing's, but both those tests came back negative. That was two years ago, and my situation hasn't really changed.

    My parents just think I'm a hypochondriac when I tell them how I feel, which I guess is true to some degree. So my mom laughed it off a few days ago when I told her I was worried I had lupus, but I'm still going to the doctor in May when this semester is over.

    Anyway, here are my symptoms:

    -- red rash/flush across my cheeks. It comes and goes and is really unpredictable, but it's hot to the touch and itches sometimes. It drives me insane and makes me feel really insecure because I'm living in a dorm and can't really hide in my room until it goes away.

    -- hair loss. I've been noticing this more lately. There's a ton of hair in my shower drain, and it's a lot thinner than it was months ago. It's really noticeable when I put it up in a ponytail.

    -- canker sores/mouth ulcers. I get these occasionally, and they're painful and super annoying.

    -- fatigue. Some days I'm fine, and other days it will hit me like a brick and I have trouble keeping my eyes open. Sometimes I get so tired it makes me dizzy.

    -- headaches. These come and go too, but they're also annoying.

    -- joint pain. Now, I'm not totally sure about this, because I've only had it a few times. But sometimes one of my knees will hurt whenever I bend it or walk. Other times, it feels like I have "growing pains" in my hands, feet, arms and legs. I can't really describe this feeling, so I don't know if it's truly joint pain. If it is, it's not that big of an issue for me yet. It just started a week or two ago.

    Oh, and about two weeks ago I thought I was coming down with the flu. The glands in my neck felt really swollen, and my body got weak. It went away the next day, but after this happened I began noticing my symptoms happening more frequently. Could this have been the start of a flare?

    Also, do you think this sounds like it could be lupus? It's really frustrating, because some days I feel totally fine and other days it's hard to get motivated and out of bed.

    Thanks for taking the time to read this! I'm glad I found a place to come if I'm eventually diagnosed.

    Last edited by deeobee; 04-03-2009 at 01:33 AM.

  2. #2
    Join Date
    Dec 2008
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    hi devin,

    so sorry to hear about your situation. lupus or any disease that is not visible to the outside world is very frustrating because others just don't see us as sick. and being as young as you are, i imagine it is even more difficult because everyone "expects you to be fine." however, i am amazed at the number of young people we have here who are suffering every day, and so many in silence. don't let others' ignorance of how these diseases work distract you from your mission of "finding out what is wrong". each and every one of us have probably faced the questioning looks of people who "don't understand why we say we feel so bad." I am 56 and still encounter the questioning looks from family and friends who are disgusted because i can't keep the same pace that i used to. i have lupus, fibromyalgia, heart issues, etc. and people still dont' understand when i have to go to bed for a few days. i realize that it is not their fault, they just don't understand.

    have you gone to a rheumatologist....this is the dr. that treats auto immune diseases such as arthritis, lupus, etc. these drs. are familiar with the different symptoms and the appropriate blood tests to be completed. unfortunately, there are many of these drs. that have no personality and their "bed side manners" are questionable....but stay strong and persistent, your health is what is important, not other's limitations.

    it certainly sounds like you have some sort of auto immune disease, but only a combination of blood work and symptom checks can diagnose which one. also, it can take some time for a diagnosis....a good dr. is most important. your symptoms sound like lupus, but also get the dr. to check you for fibromyalgia. this is a syndrome that involves the soft tissue and includes pain in areas around the joints. it can cause fatigue, and pain in knees, ankles, wrists, chest, shoulders, and the back of the neck and head area. a simple "pressure point" test can determine if you are suffering from fibro and a rheumatologist can easily test you for this (they just touch the diferent pressure points and you will feel the pain).

    you say you are in college, does your university have a student medical facility...if so, maybe you can get a dr. there to listen to you and help you get into appropriate drs. you really need a good advocate to help you get into appropriate drs.

    keep a diary of the different symptoms, when they occur, and try to describe what you feel. you say your joints may hurt in one place and then go away and hurt somewhere else. this is very common for lupus. your knees may hurt today, and your elbows tomorrow, and sometimes the pain stays in the same area for months. when you go to the dr. be sure to explain where you have had pain or symptoms, even if they are not present that particular day.

    concerning the hair loss, this is very common, however, it should grow back once your flare subsides. my hair goes through times of falling out, and then new hair will start popping up.

    my malar rash (rash on face) comes and goes and is vey difficult to hide. i try to cover with make up, but sometimes it is just too obvious. I just tell people that i was out in the sun.

    about the sun, if you do have lupus, the sun and fluorscent lighting are not your friend. avoid exposure by wearing sun block (at least 35 spf), wear sun glasses, a hat, and clothing that protects your skin. exposure to uv lighting can send you into a flare, causing fatigue, pain, accelerated rash, etc. You might want to conduct your own test and see if protecting yourself from the sun helps you feel better. those of us exposed to extended rays from fluorescent lighting will wear sun block even when we are not outside.

    stay with us, devin. we will do our best to help you get the attention you need. we all understand the difficulty and questions that you are feeling, and we will never think you are a hypocondriac...we have been there.

    there is some very good information in the "sticky" section of the forum. our moderators and members have provided specific information concerning symptoms and various tests. just browse through these, and write down any similarities that you find.

    good luck, we will do everything we can to help you.

    share a smile today

  3. #3
    Join Date
    Feb 2008
    Thanked 1,110 Times in 630 Posts


    Hello Devin,

    I'm Rob, and I was diagnosed with Systemic Lupus five years ago. Your words, are like echoes of my own. I too, knew something was wrong. I have had most of the same symptoms you are experiencing. I was told over and over that I was a hypochondriac. Phyllis has given you some outstanding advice, so I won't repeat what she's told you. I will tell you to trust your instincts, and your own body. If you feel there is something going on with your health, there probably is. You are having some distinct visible physical symptoms, so you are certainly not a hypochondriac. You may have Lupus, or it could be something else entirely. The point is, you need to know what it is so you can treat it, and so you can have an answer an set your fears aside. Making lists of symptoms, and seeing a rheumotologist are the two top recommendations in my opinion. You are becoming an educated patient, and that's a very good thing. You need to be proactive, and you may need to be a little pushy, or "in your face" with some Dr's or specialists, but this is your life, your health, and you deserve an answer and proper treatment. Anyway, welcome to our group. Make yourself at home, and don't be afraid to ask any questions, or talk about whatever concerns you. We'll listen!


  4. #4
    Join Date
    Apr 2008
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    I also wanted to welcome you to this group. There are so many knowledgeable people on this website that will want to help you. I am certain you will find comfort and support.

  5. #5
    Join Date
    Nov 2007
    Thanked 1 Time in 1 Post


    Hey Devin,

    Boy do you bring back memories...I was told my my mom no less that I was a hypochondriac for years...My family didn't believe it was anything and the doc said it was all in my head and I was after a while I started to believe them. I chided myself for being so lazy and think I was ill.

    One idea...I heard that many people who had the growing pains ended up with fibromyalgia. That is like arthritis of the muscle...the other symptoms, however are not fibro symptoms...

    So go to the doc and have everything checked out. Don't tell your mom, if possible that you are going, because it sometimes takes time to get a diagnosis. If she is like mine, she will take the lack of dx to mean she is right.
    Of course, if you are still at home then that might be a problem.

    Mountaindreemer has given some excellent her post over again and see if you can implement soem of her ideas.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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