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tiggerlishus - Heidi
07-04-2009, 02:00 PM
i have put up some photos on my profile of some things i been getting swelling and rash was wondering what people think consultant seems not to be worried about them well some soo she didn't even waht to see photos i have taken soo would appriate your guys thoughts
album also has pic of tabs i am taking at mo thou they are changing slightly over next few months as steriods are being decreased
thanks for listening H xxx

tiggerlishus - Heidi
07-05-2009, 02:31 PM
thought i would put them on here maybe easier for peopel to see nad tell me what you think!!!
1 is my rash verly little but stings and itches
2 swallon face first thing in morning can get worse eyes and lips swell
3 swallon hand can also get worse

mountaindreamer
07-05-2009, 05:49 PM
hi lady,

in picture #1, my rash does not go down around my mouth and nose....it is located accross the nose and cheeks.

Picture #2, i can't really make out.

picture #3, i get some discoloration in my hands when they are hurting, with red spotches and swelling. Don't know if you have same thing or not....

also, whenever i show these different physical symptoms to my dr., she says they are lupus.

hope you are feeling ok.

crmj1183
07-05-2009, 09:30 PM
Heidi,

All those pics look like lupus to me. My face has the rash on my cheeks and surrounding my nose and sometimes its stings and burns, like a raw sensation???mSometimes that feeling lasts for a few weeks. Is that what you're feeling?? The swollen face and eyes are typical of lupus sometimes I get puffy, put a warm clothe over your face before you leave out that will take care of that. And the hands .... they get swollen often with lupus Ive noticed at least for myself, I mean they are not usually ridiculously swollen but I can tell when my rings don't fit. I'm sorry you're going through this, it will be fine and it does get better. It sounds like you are experiencing a mild flare. It shouldn't last too much longer. Stay strong and positive this too will pass. Promise :yes:

Chriss, hope this was helpful

tiggerlishus - Heidi
07-06-2009, 03:25 AM
thanks guys xxx
yer chriss the kind sting raw feeling like you been scrubbing at your face with brilo pad is exactly it !!! thank for warm cloth tip will try that with my hand it get to the point where i have to run my hand under cold tap to cool them down and try a bring welling down get to the point some times that i can't straighten them out or make a fist!
i thought as much it was lupus but my consultant insist that as all my bloods are ok that lupus is inactive so i must be fine apparently!!
thankfully my face has only got that bad recently other wise it can look like some one punched me in some cartton if it happens will take a photo and place that up,
juust feel bit better knowing not alone xxx

Oluwa
07-06-2009, 05:14 AM
Hi ya Heidi...

Malar rash in not solely located in the butterfly shape on the face...The rash can be anywhere, except the common characteristic of it is it doesn't turn red under the nose or the sides of the nose...naso-labial folds. That is the crease from the nose to the corner of your mouth. That white area or unaffected area is what forms the red into butterfly wings...

But you could get the rash on you chin, fore head....around your mouth...I've had redness around my mouth. Looked like a Kool-Aid ring...

Google malar rash...using google and then at the top left of the window click on images...dozens of snaps...try this link...

http://images.google.com/images?hl=en&client=firefox-a&rls=org.mozilla:en-US:official&hs=nu7&q=malar%20rash&um=1&ie=UTF-8&sa=N&tab=wi

I too get the swollen face, puffy eyes when rising...and fingers that look like they ought to be in a hot dog bun...my daily norm. But when my legs turn rock hard with edema and I can't make a fist because of the fluid build up I pop Lasix, prescription diuretic.

Test do not always depict the activity of the diseases....many times my test come back normal...while my face is bright red, body swollen and in pain. So, it is safe to say the information your doctor is saying is, well, incorrect.

Your symptoms are the gauging factor of your disease's activity and should be treated.

Though these symtpoms are really not trouble som, well unless you are having issues with your kidneys and heart that could cause the edema....but these everyday symptoms can affect us mentally and emotionally about our appearance.

Ask for prescription diuretic...

Are you dosing with Plaqeunil....that helps keeps the malar from flaring all the time..but it doesn't stop it completely...like in me. It tamed it for the most part...

I use Neutrogena Gentle Scrub...and just a good ice water rinse makes my face feel not so tight and puffy...

Drink plenty of fluids, keep cool...keep the sodium low and that may help with the water retention...

Be well....enjoy this day. I will too.
Love,
Oluwa

crmj1183
07-06-2009, 07:29 AM
Heidi,

If your face is swollen when you wake up put the warm clothe on it, if your hands are your biggest concern or is the most problematic for you I would talk to your dr to see about maybe doing some hand physical therapy. I went for about a month a couple times a week and it helped me a lot. But thats onlyif you feel like you cant deal, you know? You're definitely not alone. Im sorry you're going through this, I hope you feel better soon, Talk to soon...

Keep me posted,
Chriss:yes:

tiggerlishus - Heidi
07-06-2009, 02:53 PM
ahh thanks guys for advice i will read again in morning as ti tired ti take it in now as its ten to eleve at night here and i am one of those annoying ones that don't realy have trouble sleeping if anything have trouble staying awake lol
as far as concern none of the individuall bother me it collectively with the add brain stuff well think its oover tired, over thinking with little understanding from docs and not many people round to let off steam with and get cuddles with if you know what i mean xxx thanks for listening guys xxx