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Thread: New Member Introduction

  1. #1
    Join Date
    Sep 2006
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    Default New Member Introduction

    Hi All!
    I have recently been diagnosed with discoid lupus, and have so many questions, don't know what to expect, am so much in the dark about lots of things. I was diagnosed by my dermatologist, after the probably "normal" scattershot approach, until I finally said, cut out a chunk of this and send it to someone who knows what they are doing, so we can finally figure out what the heck this mess is. After the first diagnosis on the biopsy, then a million blood tests, she said that I had only the dermal marker for lupus. This was in May. Luckily I do not have the "butterfly" on my face, just lots of lesions on my back, chest, arms, neck, and a few on my face.

    So thanks to my friend, I found that there are support groups for this!!! Thank you all. The other things, I have absolutely no idea how to do anything on this site. I would love to know how to ask the questions I have, on this site because I feel sure someone(s) has had this same thing and knows what to expect, etc. For instance, I have experienced what my family physician refers to as "recurring flu syndrome". This is when I feel like I have the most horrible case of flu, hurt all over, headache, bones, joints, skin, etc, but no fever. This has been going on sporadically for several years, and lasts from two to nine days each time. Also, I have absolutely no energy, and wonder if this is also part of the disease, since it is just the dermal stuff, and just diagnosed recently. In other words, has this disease been affecting my body for quite some time, and just became apparent since the first lesion appeared?

    I look forward to hearing from you, and getting to know you all.

  2. #2
    Join Date
    Apr 2006
    Tacoma, WA
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    I'm by no means an expert, but it sounds to me that you have more than just discoid lupus. The achy joints, headaches and generally feeling crummy all point to SLE. You should do an Internet search of SLE symptoms. I was amazed by the number of symptoms I was experiencing that I just thought were unrelated little annoyances. My advice is to go into a rheumatologist so you can start treatment right away. Don't make the mistake that so many of us do and wait to see a doctor until you are in so much pain you can't function. Good luck with everything and let us know what happens!

  3. #3
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hi New Discoid;
    If you will note, at the bottom of each page is a drop-down menu with "jump to:" written to the left of it. There are seven forums in that drop-down menu that you can post in, depending upon the question that you'd like to ask. For example, if you want to ask a question about a symptom, you can post it in "Lupus Erythematosus Symptoms" and someone will answer that question in that forum.
    If you go to each forum, you are correct in assuming that you will probably find a question, an answer and a discussion about some of your concerns. I would say that we've addressed almost every aspect of Lupus somewhere in these forums.
    Most of us have come to the conclusion that we suffered lupus symptoms for years before we were diagnosed and fatigue is the most common symptom of lupus. Our fatigue goes beyond being tired; it is absolutely debilitating at times. I would also say that the flu-like symptoms that you've suffered are also part of your lupus. Each of us has different symptoms, but some of the most common symptoms of lupus include painful or swollen joints (arthritis), unexplained fever, and extreme fatigue. A characteristic red skin rash (the so-called butterfly or malar rash) may appear across the nose and cheeks. Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Because many people with lupus are sensitive to sunlight (called photosensitivity), skin rashes often first develop or worsen after sun exposure.
    You will learn a lot from reading the posts here. Also, the Lupus Foundation of America is a wealth of information for questions and concerns that you may have.
    Welcome to our family and I hope that we can help you to navigate through this with support, comfort, information, and friendship!

    Peace and Blessings

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