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Thread: Newbie here and have a long road ahead of me. Advice please.

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    Exclamation Newbie here and have a long road ahead of me. Advice please.

    Hello everyone,

    My name is Amber, I am going to be 28 in AUG. For about 4 years, All i can remember is pains and aches and surgeries and moments of helplessness. I recently have been searching for answers and surprisingly found this website. I am so glad to find people that relate to me. I did find another SLE message board but I couldn't really connect to the members post and threads. This one grabbed my attention right off the bat with " The spoon theory".

    Anyhow, when I was a very young child, about 4 years old I was diagnosed with Psoriasis. Ive been able to manage it most of my life with sun heavy oils steroid creams and bag balm but the past 4 years things have changed. Even more so the past year. I started to get bad joint pain.

    Started with shoulders, I had two surgery as a result. Then all my life i was told i wasn't able to get pregnant and they couldn't tell me why. I ended up with an ectopic pregnancy. It was agony but after four months of treatment i finally had surgery to resolve the pregnancy. 3 years after the ectopic I ended up with a miscarriage.

    Now i should probably tell you at this time I was living in Oregon. Im a LPN so being painful make my 8-12 hour shifts on my feet very difficult. I started getting back pain, then hip pain, then knee pain, and then feet pain. I thought that was due to my job so didn't think much of it. With it being winter in oregon I started having really bad hand pain. At work having to constantly do meticulous procedures with my hands that required a lot of dexterity i assumed my hands were just tired. The pain only continued to get worse. After all the aching and constant pains I thought i was ready for a new environment. SO my family and I decided Arizona was going to be our new home. With the sudden decision to move it took some time to get our affairs in order.

    While waiting to move i started having a lot of GI problems. Test after test and agonizing pain again finally was diagnosed with NAFL disease. the news kind of hit me like a ton of bricks. Then i was told i had IBS. which i had figured that much with the years of anxious bowels LOL

    well right before i moved I had an appointment with the GI doctor who was checking my liver elevations and decided to do an ANA test as well. He informed me it came back positive. I asked him for what and his response was its too hard and too much time involved to figure it out. So i never had the answers I needed. Shortly after i moved to arizona and things got a little better for a week or so. Then one day after laying out in the sun ( which I've done since i was 4 due to psoriasis) made me super ill the next day. My hands hurt worse than ever and my palms of my hands burned. I got this horribly bumpy rash on my forehead and cheeks. I felt as if i was in the iron man contest the day before and in all actuality, I had just mosied around the house.

    the stress went up due to the move and new bills and a mortgage much higher than before and awaiting my nursing license transfer. I started getting migraines, hair started falling out in clumps, starting getting weird bruises on my legs in places i never bumped. each time i went out in the sun within seconds i would feel like my legs and chest were on fire, like literally in flames. When id come in id have this weird fishnet red skin pattern that i never had before. I started to do research and go over my blood results and this is where Ive landed.

    and FYI auto immune runs in my family.

    Sorry for the long introduction. I see my new doctor tomorrow and am very nervous. Im not going to go in telling him what i think obviously. I will just let him know my symptoms and go from there. Any advice would be much appreciated. Thanks.

  2. #2
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    Hello and welcome to our WHL family. Like many of us here, your symptoms go back many years and were surrounded by unanswered questions and a lack of a clear and concise diagnosis. Unfortunately, this is the nature of the disease and we simply cause ourselves unnecessary stress by looking for straightforward and definitive diagnoses. The diagnostic process can be quite lengthy and frustrating as it is a process of elimination.
    One thing that is quite common for those of us with this disease is the fact that we must avoid the sun like the plague. Exposure can cause us to have serious flare-ups, can bring about new symptoms, aggravate current symptoms, and wreak havoc on our bodies. It is important that you protect yourself from UVA/UVB rays as much as possible. Never go out without sunscreen (broad spectrum - minimum 50 SPF), always wear clothing that protects all of your body, wear a hat and sunglasses. Even as such, limit the amount of time that you are in the sun. The after effects that you've described are quite common for those of us with Lupus...unfortunately.
    How did your appointment with your doctor go? Please let us know what has been decided. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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