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Thread: Just Diagnosed with Lupus-Please Help

  1. #1
    Join Date
    Dec 2009
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    Default Just Diagnosed with Lupus-Please Help

    I have just been diagnosed with lupus and really dont understand at all..
    If someone wouldhelp me to understand this disease I would be forever grateful! The drs. havent told me very much at all, and I would like to talk to people that have this disease. I have what I call flair-ups, where I am soo tired I cant function.Also I get extremely sick, and recently ( twice) broke out in large red welts, dr said it shouldnt itch, but he was wrong. Please if anyone can help I would greatly appreciate it. I have just been recently diagnosed, also I have a fatal lung disease.
    Thanks, Sophie

  2. #2
    Join Date
    May 2007
    Seaside, Ca.
    Thanked 948 Times in 732 Posts


    Welcome to WHL, sweetie. You've come to the right place for information and understanding. We've all been there, and there is a wealth of information on this site. Just read through some of the threads that interest you, and don't hesitate to ask questions. There is always someone on here with some experience that can help.
    Our moderators, Saysusie and Rob, are awesome! Saysusie has an incredible amount of research about Lupus and other AI issues at her fingertips - just ask her a question!
    Also, I've done a lot of research on my own. Knowledge is power, so learn as much as you can about what is happening to you.
    You used just the right word. We all experience flares, or times when our symptoms just seem to get worse. There are meds that some of us take that help with the fatigue and slow the flares down a bit. I take Plaquenil, Methotrexate, folic acid and mega-doses of vitamin D for it. There are others who get relief from other drugs. You will need to establish a good working relationship with a rheumatologist and then decide together what will work for you.
    Keep coming back, find some friends here, and keep us informed as to how you're doing.
    Gentle Hugs,
    Last edited by magistramarla; 12-16-2009 at 08:25 PM.

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


    Hi Sophie;
    I know it can be so very scary when you are newly diagnosed and you have little information about your disease. Lupus affects each of us differently and its symptoms appear differently for each of us. There is a lot to learn about this disease and, especially, how it affects you.
    Lupus is a disease that can affect every part of our bodies; our tissues, our muscles, our nervous system, our organs, our blood vessels, and our bones. It is a chronic disease, meaning that it lasts for years and years and, often, never goes away. Basically, something goes wrong with our immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect our body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy our healthy tissue. These autoantibodies cause inflammation, pain, and damage in many parts of our body.
    Since the exact cause of Lupus is not known, there is no cure for the disease at present. At best, our medications and treatments are geared towards managing symptoms and reversing and/or preventing damage.
    As Magistramarla suggested, begin by reading some of the posts here on these forums. You can start by reading the "Sticky" posts. These are usually filled with information and may answer some of your questions immediately. However, if you have any anxiety, questions, fears, or just need to know that you are not alone, we are always here to help you.
    Some basic things that might help you a bit is:
    1) We all suffer with the flare-ups (called relapse and remission syndrome). There are times when our symptoms are not severe and we can function somewhat normally..then there are times when they become severe and we can barely get out of our beds. That is the nature of the disease
    2) We are all very sensitive to sunlight and fluorescent lighting. It is important that we avoid both as much as possible. Many of us wear sunscreen 365 days per year and in the summer, we are covered in protective clothing from head to toe. Exposure to sunlight and/or fluorescent lighting can cause skin rashes, joint pain, nausea, and a general worsening of all of our symptoms.
    3) Our fatigue is downright debilitating. The best description I've ever heard was provided by our Moderator, Rob. He described it as feeling like we are lying under a lead blanket. Due to this, it is imperative that we allow ourselves ample time for recuperative rest. Never push yourself to do anything, this will only cause complications.
    4) However, it is equally important that we get some type of exercise regularly. Preferably a form of non-jarring exercise (like yoga, swimming, pilates, etc.)

    Please know that you are not alone and that we are here to help you as much as you can. Do read the member's posts and "sticky" posts here. After you've done that, we are here to answer any questions that you may have.

    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Nov 2008
    hervey bay queensland australia
    Thanked 209 Times in 178 Posts


    dear sophie welcome to whl we are like one big family here and will be here for you to talk and we will and answer any question you might have rob and say susie are wonderful people with great knowledge of this disease hugs kim l

  5. #5
    Join Date
    Apr 2009
    Blog Entries
    Thanked 24 Times in 22 Posts


    Hi Sophie. ((((((Hugs)))))) I'm so sorry your doctors haven't been the kind of doctors they should. I can relate. It sucks to be told you have something but you're not informed gently and kindly and able to ask questions and get answers.

    That's what propelled me here and the support has made all the difference. Pull up a chair, get comfortable... you are in good company here.

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