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Thread: Anybody else have vascular SLE + Raynaud's (as part of the whole A.I. complex)?

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    Question Anybody else have vascular SLE + Raynaud's (as part of the whole A.I. complex)?

    Hi,

    This week my vascular SLE has been wicked w/ T-wave inversions through the roof. Where there's usually only about 5 events/day, this week it's been a few times/hr. Last night the inflammation raced into the muscles in my extremities and my hands, feet and nose went cold and my lips turned Raynaud's blue.

    (I last saw the cardio in June--prior appt. in March? w/ SLE sclerotic changes noted--w/ a stress test scheduled for Dec.)

    I've been on the fence about whether to post about this but, I guess misery loves company (sorry, but true )

    Nothing's new--mild-moderate chest pain, ominous feeling, heart stalls/starts up and then the flare w/ flushing & inflammation--just more frequent and mixed up w/ the other A.I.s.

    Thanks so much!

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    Have you been diagnosed with Pericarditis? Usually T-wave inversions are common with this condition, especially given that you say the inversions are through the roof. I see that you are scheduled for a stress test and that you've previously seen a cardiologist. My question is..has anyone tested you for or diagnosed you with Pericarditis?

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    Thanks for answering, Saysusie

    They haven't checked for it (they haven't even considered it.) Skimming the symptoms & tests, it definitely looks like it should be considered a factor.

    I don't know whether everything's worsened or whether I'm just noticing things more since everything started flaring about 4 weeks ago due to a death. I used to be able to wear my leg braces just a few times/wk, now it's painful to go w/o them for a few hrs--my legs just don't have the same stability. Sleep has been reduced to bursts of 2 - 4 hrs at a go since the house became so quiet.

    The heart thing is just weird and really exhausting. First there's that feeling of dread/horror/an ominous feeling, then I clutch at my clothes trying to open everything up over my heart & take anything that could cause pressure from it, then I gasp open-mouthed like a fish starved of water/manically hungry for oxygen, my hands and feet draw inward, all muscles, esp. peripheral ones ache, and I writhe a bit during the time I feel my heart race to catch up to whatever it's missed until that finally settles out w/ feeling worn out and I get the large, thick vascular lupus rash on my face, neck, chest, abdomen and top of arms. In all, the events only take about 5 - 7 minutes from start to finish. (Then, of course, the A.I.s seem to seize the opportunity and keep everything sore from the flare.)

    They say the t-wave is when the heart's readying itself, between beats, to beat again.

    My dad said his heart attack was the most pain he's ever been in in his life. We share the same cardiologist. It's not the absolute *worst* pain I've ever been in, but I really dread the episodes.

    The cardiologist said treatment for the inverted t-wave, arteriosclerosis, vascular lupus and Raynaud's would be a beta blocker which he thinks would cause more pain and exhaustion w/o returning enough benefits.

    I think you're really right, though. Someone should look at these in a bit more depth, even if it's just wearing a halter monitor for starters.

    It's illogical, but that awful feeling plus gasping for air makes me wonder how long, prior to feeling those things, my body's being affected/craving O2 before the body's
    "panic button" is switched on?

    Thanks again,* so much*, Saysusie, for understanding the weird stuff

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    As I Mentioned before, sometimes we have to DEMAND that our doctors do what WE want them to do, in spite of thier opinions or beliefs. Their primary function is to help return you to good health..running additional labs is a necessary step in that process.

    Please let us know how it goes!

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    steve.b (11-02-2015)

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