COMMUNITY QUESTION: Could this be lupus!?

AlyssaWinegardenAlyssaWinegarden New Life Outlook
Tammi asks: 'I have been dealing with fibromyalgia for years but for the last several months I have gotten much worse. I hurt nonstop, I have NO energy, and all I want to do is stay in bed. Over the last month I have developed severe headaches, and just a "weird" feeling or fluttering in my head. I swell all over, especially in my legs and feet, and just recently started having facial rash, itchy feet and hands. I was sent to my Dr yesterday and he did lots of blood work but he feels like I have Lupus... Please help!!! I need advice, I need to hear from someone first hand that truly understand the misery I'm in.'

Comments

  • AmagnusAmagnus Member
    edited July 2016
    I am going through something very similar...One dr I visited thought it was Sjorgrens until I sent a photo of the rash to the rhuemy doc.. Now they are retesting for lupus again. This morning I woke up with a red fingertip with no feeling. I thought, "oh great. Something new now" It's like watching your body disintegrate all around you. Very scary. I have had some similar issues to yours, especially the fluttery feeling, and my GP insisted it was just fibro (which is a pain centered disease and evidently not an autoimmune related disease) and he refused to refer me to an Internal Medicine specialist, which was the last kind of Dr. who diagnosed me with Chronic Fatigue Syndrome 30 years ago. I have been reading that lupus is very tricky to diagnose as you can have a lot of negative tests before it shows up in the blood work. My regular rheumy who gives me shots for arthritis had confered with my GP, so he was convinced it was just fibro too. A friend at work's wife has lupus and he's the one who pointed out the malar rash on my face, which of course never crops up when I'm with the dr. I finally sent a pic of the rash to the rhuemy's nurse and I think the bells started going off finally. Half the battle seems to be getting the diagnosis! Hang in there. I will say a prayer for you!

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