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Thread: New here. Seeking answers.

  1. #1
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    Default New here. Seeking answers.

    Hello.
    I have been trying to find answers for a long time now. Sometimes I feel like maybe I am crazy, and have just been trying to suck it up and deal with it.
    Most of my symptoms are not at all severe. Lately things seem to be becoming gradually worse though. Lupus does seem like it would explain things maybe- my coworker thinks that is what's wrong so I have been trying to read more about it.
    I'm hoping that this community can help guide me in the right direction.

    One of my issues is with the sun. And that does seem to be getting worse. I can not stand the sun. At all. When the direct sunlight touches my skin it makes me feel sick. I get headaches and dizzy. If I can't get away then sometimes I get short of breath. the higher the UV index, the worse this is. I have developed a hatred of the summer because of this. And this year I am realizing that my other complaints get worse in the summer too.
    I do not get a rash or burn easily. I just feel sick and become disoriented.
    I also have joint aches and sometimes my hands just don't work right. I always thought arthritis type issues got worse in the cold, and while the cold can make my hands ache- in the summer they get really weird. They feel like they won't bend right, and putting pressure on things- like to open a jar feels awful and they are weak and can not do it.
    I am only 32 years old, so I feel like I should do things like untie my boots no problem, but in the summer I sometimes can not.
    Just the last month and a half, my hips have begun to hurt too. I have not done anything different or injured them, but I wake up to a deep, burning ache.

    I do have a pinkness across my cheeks and nose. I have for years. I'm kind of self conscious about it, and always wear makeup.
    It does fade and go away sometimes, and come back other times. It has never itched or hurt or anything. Lately is has a few little red lines in it too.

    I get unexplainable mild swelling, discomfort, and sometimes pain in my abdomen. And within the last year, I am having bladder troubles.

    My blood work came back negative on the ANA test.
    It also has been showing a downward trend with my WBC, and now my platelets are low too. My red cells are good though, and my kidney function seems totally normal.

    I have been struggling with fatigue really bad lately. It has reached a point where it is effecting my job, and my life at home.

    It's so frustrating because I know something is wrong.
    One doctor told me I have depression after I said I was so tired and all. It seemed like a cop-out answer. Another doc told me that "we just have to wait for it to present itself". Which I assume means that something has to get worse to show them what it is.
    But I am hoping that this forum can help me know if I am looking in the right direction?
    Your personal experiences may have infinitely more insight than my crappy, cheap health care GP, and let me know if it is worth trying to seek a better doctor and pay out of pocket.

    Any info is deeply appreciated. Thank you.

  2. #2
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    Default

    Sorry, I bet this forum gets a ton of posts like this.

    I forgot to mention some things:
    "brain fog" being one of them LOL. Also dryness. My mouth and eyes are dry all of the time. Years ago when I saw an eye doc about headaches at the behest of a friend with glasses (my eyes are fine) the eye doc guessed I have joint pain just by my dry eyes. I can honestly say that his suggestion for preservative free drops was one of the best things I've ever been told.

    Also I have had parvo-B19 virus. Which some studies indicate may trigger lupus.
    Has anyone been diagnosed that has had parvo?

    Thanks again for your time and any insight.

  3. #3
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    Hi VKat,

    Welcome to WHL.
    Most of your symptoms do sound like Lupus, but the only one who can determine that is a Rheumatologist. Sadly enough, even a Rheumatologist, has a hard time to find the right diagnosis, because there is not one specific test, that will clearly say, that it is Lupus.
    Many of us here on WHL, had a long journey, to finally get diagnosed, some of them took years. That doesn't mean it will take years for you.
    The dry eyes and mouth could be Sjogrens, which is like Lupus an autoimmune disease.
    I think your next step should be to find a Rheumatologist and make an appointment asap., because it usually takes months, before you get an appointment.
    If you have rashes or swelling, you should take pictures, so you can show them to the Rheumy, because many of us look fine on the day we actually see the doc.
    Hope you will find answers soon.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    VKat (06-20-2013)

  5. #4
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    Hi!

    Yup, years and years and years...of course some people get their act together way quicker than me!

    It does sound like lupus and frustratingly similar with docs and tests etc. I knew I was poorly, but I got so tired of drs quizzing me and telling me vague guesses that I gave up completely. Luckily now I have a rheumy who didn't wait for me to make a fuss. He put me on plaquenil and I honestly am so glad that he clearly saw the signs for lupus and acted rather than telling me to go away until I couldn't function anymore!

    Find a rheumy, keep a diary and don't beat yourself up...I'm sure you aren't nuts! (And lots of us get more poorly when we 'suck it up'! Tho I know we do it LOL!)

    Jx

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