I often have my colour drain quickly from my face leaving me very white or greyish looking. I can usually tell when this happens as I have an odd sensation/feeling sort of an overall (whole body) draining feeling just before hand. I can also feel really weak and tired but not always. Sometimes my colour comes back after a short while but sometimes it can take hours.
Would like to hear if you are the same.
Yep, that happens to me all the time - I go from "you look so well Trace" to "you look like crap"! lol
Happens to me too so you're not alone. One minute looking and feeling not too bad, next you can actually see the colour draining out of your face and need to sit down before you fall down! I go about looking like a vampire most of the time! Grey face, black eyes with red rims! Just got to laugh about it! 
Don't take this wrong but nice to know not just me. Have you ever been told what causes it?
Yes Yes,this is the only time my Husband knows i'm ill.I don't know why this happens, but in my years of having Lupus it is not un- common
I think of it as a warning that if i don,t slow down ill i'm going to be ill
Lupus is a very Lonely thing to have because you look well and nobody but your self know how you feel,so having this site and belonging to lupus & facebook
your not lonely any more you have some one at hand 24-7
Yes I get pale and grey looking depending on where I am on the 'flare' scale. I also find I get a definate blue line around my lips when my lupus is active and the temperature drops to about 8 degrees celcius. It's quite embarrassing as people fall over themeselves to say 'My god your lips are so blue, are you ok?!'
The Azathiaprine is also mutilating my red blood cells so I'm slowly getting more aneamic. On the upside, at least we fit in around Halloween!!
Yes, I do but am not diagnosed with lupus. My tells me when it happens, which I can feel anyway. I have had 3 DVT's and am on warfarin but because this masks the blood tests I am now off it and on heparin, it seems to happen more frequently now so maybe its a blood thing!
I am so pleased that I joined this forum just knowing some of the symptoms that are described are not in my imagination. Thanks
i do not have a confirmed diagnosis of Lupus either but have had a postive test for Hughes and waiting for my appointment at haematology. At the moment I am on 75mg of aspirin. At my last rheumotology appointment my results showed that my UCTD was still active and the consultant expects it to be Lupus in the end.
I would love to find out what causes this to happen but I do think it may be when I do not rest enough.
Thanks for all your replies it does help to know it is not only me and hopefully I wont scare the trick or treaters tomight by being whiter than their make up lol!
thanks you for that question..i also go from putty grey to white in seconds and yes the blue lips with red eyes are great for halloween poor kids looked scared out of there wits when that rang my bell.... i just though it was normal to go like a traffic light then to look like iv been coverd in flour ..so once again thanks i do suffer fron sle lupus with a anti colagelent problem i no it take ages to get answers but keep bugging them ..good luck best wishes to you x
Is looking like a traffic light the beautiful shade of red I go when my body temp shoots through the roof and I have to take off as many items of clothing I can without offending anyone? I seem to be constantly putting on and taking off my cardigan! I also find it embarrassing the way my glasses steam up as the heat builds. Don't think I will be wearing any jumpers this winter which is a complete change for me because up to about a year ago I was a chilly mortal but now I am in t-shirts and turning the heating off lol. What fun we have with this condition. x
yes what fun we have also like you last year i couldn't get warm and had a bad time ..well all has changed im still in my short's and t-shirt as i'm boiling hot and the fever has hit a all time high..so it might be cheaper this winter in my heating bill's lol...it was raining when i went out this morning it was bliss but i did steam a little ,people around wear i live must think only god know's or that i'm totaly mad which i dont care ,if thay had whot we have thay might understand as our condition is crazy i have gave up with the embarrasment as if anyone ask's whot is the matter no body has heard of lupus so i have gave up on trying to explain... best wishes and lets steam together lol x
I have no diagnosis but this is interesting , my journey started I was always sooo cold and raynauds badly even in summer then followed by years of heat where even in winter I only ever wear t-shirts , and still get hot and jumpers redundant.even open toes shoes in winter with colour changing feet but so hot 🤷♀️everyone moans how cold it is indoors and I go outside to cool down .I get some strange looks from people with coats and hats on.
I was never like this before all my symptoms and journey arose, like you I was a chilly mortal.
Hi there, 34yr F, I've been having these very same episodes for years now, all of a sudden I lose all the color in my face, go from normal to white in seconds, my body feels as though it's boiling or on fire, loud noises in my head which I can't explain with the feeling that I feel coming on before I lose consciousness. I will faint if I do not sit down or lay down, but I do get warning and I always listen. When I'm laying there I feel very weak & sometimes have difficulty speaking, I have been explaining to Dr.'s for years but still nothing is certain. They have never diagnosed me with anything, everything always comes back normal, now I feel as though my Dr.' Think it's all in my head. I had to switch Dr.'s a couple of times, They think I'm doing this for attention which is not the case... heart breaking when your trying to get help.... on another note I believe this could be hereditary since my 12 yr daughter also suffers from this condition, she told me she was dizzy, I felt her body which was extremely hot to the touch, I realizing this is what I go through, told her to go sit down, she took 2 steps, fainted & hit her headwith extreme force on the bath tub without a blink of an eye or sound muttered & had no idea what happened when she came back to. Any input out there, I'm a worried mother for my child & myself with no help from the medical expertise.
Does anyone else experience this?
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