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  1. #1
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    Default Trying to figure all this out

    Hello everyone!,
    I was recently diagnosed with Lupus, Fibromyalgia and vasculitis after 7 years of a variety of symptoms and false diagnosis'. I am scared and overwhelmed as most of you have or still do.

    I have a few questions if anyone can help:
    Most of my symptoms were consistent throughout the years (constant cold/flu/temperature/aches ...., then all of a sudden about two months before my diagnosis, I just kept "getting" weird symptoms and other diseases such as cutaneous vasculitis, epstein bar (sp?), positive strep B, much more severe muscle spasms and pain in neck, back , head, alarming memory loss....

    Is this typical of Lupus? Why would these new problems all of a sudden hit me so strongly? (I have now gone on plaquinil and many natural supplements - not seen tremendous improvement and have developed severe acne and hair loss since started taking plaquinil).

    I'd appreciate any insight :P
    The bird with a broken pinion never soared so high again, but its song is sweeter!

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Phnxgal; Yep, your symptoms sound like LUPUS, Fibromyalgia and vasculitis! Each, on its own, is a lot to deal with, but heaped together, they make life rather difficult. I cannot tell you why your symptoms seem to aggravate shortly before your diagnosis. I do know that making a positive LUPUS diagnosis can take up to a year sometimes, and during that time, your symptoms escalated.
    I was surprised to hear that you lost hair after taking plaquenil...the drug did just the opposite for me??? The good news is that you hair will eventually grow back!!! Try not to despair over that! You usually have to be on Plaquenil for about 3-6 months before you see any significant improvement. Be patient!
    The memory loss is a symtpom of both LUPUS and Fibromyalgia..so you are not going crazy. Here is the thing though, the medications given to you to help both conditions can also cause memory loss. I have learned to rely heavily upon my calendar, my pocket computer and a small notebook where I write down everything that I feel is important! Do not get scared...you are not suffering from any diminished capacity. We just have to learn to adjust to the symptoms of our illness so that we can continue to function.
    Talk to your doctor about anti-depressants as mood changes are also common symptoms of Lupus and Fibromyalgia and can have an effect on your memory!
    What you are experiencing is common for those of us who suffer with Lupus, FM and vasculitis. You are not alone...please do not allow yourself to become overly stressed! We are here to help you and to support you!
    Best Of Luck
    Saysusie :roll:

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    Default Trying to figure it all out

    Thank you so much for your reply! I will speak with my doctor about the anti-depressants. I've always been so "anti" anti-depressants, but now that my life has changed with this illness, I will have to reconsider my view. Thanks for your support 8)
    The bird with a broken pinion never soared so high again, but its song is sweeter!

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