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Thread: Fibromyalgia

  1. #11
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    Default Re: Fibromyalgia

    Quote Originally Posted by carriejeane
    Well today I was diagnosed with fibromyalgia, although I was told that I may indeed have lupus... just in the early stages and not enough to give a "diagnosis." We all know how that is

    My ana was 1:320 and all but one of my other tests were normal, my red blood cells were a little low. We are doing some more testing for thyroid issues because of family history, but the doc doesn't really expect to find anything.

    My question is how many of you got the fibro diagnosis first, and later were given a diagnosis of lupus?

    Carrie
    I was diagnosed with Lupus and Raynaud's first, then Fibro. Which I was told my a good friend at our local hospital, not to tell them you have Fibro in an emergency or they think you are a drug addict/nut case and send you home. Unfortunately, I had that happen to me twice before I stopped telling them all my autoimune diseases.

  2. #12
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    Default

    I suspect I've got fibro along with the SLE - but no dx at this point. Actually when I was dx'd with SLE I thought it was FMS. My SLE has always been on the mild side, so symptomatically it seems about the same.

    Quote Originally Posted by MrsMurdena
    Intellectually I understand the need to exercise but physically I just can't seem to do anything. It absolutely exhausts me and then I'm down and out for a couple of days. It seems that anything more than a quiet life in my house produces debilitating fatique and a bright red lupus rash and overall body aches but mostly I just don't know how to get past the extreme fatique. Am I being a wimp?
    Oh MrsM! I understand, there are days I can hardly make it through... and other days I could walk from my house to yours (well, feel that way, anyway!)

    I've found I have to take it much slower than I did before SLE. Some days the treadmill is set at 2 miles an hour and I go for 20 minutes. Then gentle gentle stretching for a bit. Those are the hard days. The good days? Treadmill at 3.5 or 3.7 mph, maybe some light weights. The REALLY good days? Eliptical for 35 minutes, then light weights.

    Just do a little. If you walk out side (and it is SO beautiful in Illinois today!) just go 1/4 a block if that's all that feels good. and maybe Saturday you'll be able to do 1/4 block again. Next week? Maybe 1/2 block. Don't build up too fast, but do remember to stretch gently. If you have a friend who knows yoga, ask them to work with you on that part - many yoga stretches are perfect for us.

    Oh yes, and even in our slanting long light of fall, wear a hat and sunscreen!

    Hugs to all,

  3. #13
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    Default fun isn't it??

    I also was diagnosed with both at the same time. along with all kinds of other fun stuff. doctors are over rated. i've done so many tests lately, and how can everything be ok, when all i do is hurt?

  4. #14
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    Just one fun diagnosis after another, isn't it?

    I got the Fibro diagnosis a couple months ago. Like lupus, I assume I've had it quite a while. Just didn't have a name for it. Lately my hips hurt so bad in the morning, I walk like I just got off a very wide horse. Like John Wayne, except a little more feminine. (Did you ever see "The Bird Cage?" The scene where Nathan Lane does his John Wayne imitation? Yeah....like that! :lol: :lol: :lol: )

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  5. #15
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    Default oh i hear ya!!

    ooooooooooooooo my hips have been awful from the get go also... it pretty much sucks

  6. #16
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    I've always had that as long as I've had the FMS. My hips were always the worst, then my lower back and then my shoulders. The pain is awful, isn't it?

    AB
    AB

  7. #17
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    Default hell yes!

    not having any control over it is awful... not having anything to control pain with.. also awful... :roll:

  8. #18
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    Not having a blood test that says your sick, awful; not having anyone understand that even though you don't look sick you are, awful; Being self critical because no one believes you, awful...
    AB

  9. #19
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    Default seconded

    feeling like a useless burden is awful also.. i know where your comin from my dear both my hubby and daughter have been great in supporting me.. but i can't do anything but feel useless and like a HUGE burden on everyone... sucks.

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