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Derrie
05-31-2012, 08:40 PM
Hi all,

My second most annoying symptom (after the pain) is whatever is going on with my poor eyelids. For months now, my upper eyelids have been slightly puffy. They're also discolored, kind of purple-y, and every little vein in my eyelids is red and very visible (telangiectasia, I think this is called?). And I get petichiae on my eyelids, too. All this I could handle. But they also sting and feel generally uncomfortable-- like you'd feel if your eyes were very puffy after a heavy bout of crying. I've tried in vain to relieve this issues with hot compresses, but it doesn't help.

Has anyone else experienced this problem, and if so, does anyone have any tricks for relief? This is driving me batty!

BonusMom
05-31-2012, 11:06 PM
I haven't had this issue but you mentioned you've tried not compresses....have you tried cold? I'm thinking that cold shrinks the blood vessels and would relieve the swelling, at least somewhat.

Since this has been an issue for some time, I would get it checked out by your doctor.

SleepyInSeattle
06-01-2012, 07:14 AM
Oh my goodness - my poor mom has struggled with this for YEARS...she also has Raynaud's and rosacea. I will ask her what works best and get back to you....I can't remember what she found, but I know it's been much better lately....

NurseSusan
01-31-2013, 05:08 PM
Hello!
I have been suffering from this for the past few months. It especially happens when I am under stress. Also, I will go to sleep and it will be minimal or not even noticeable and I wake up with my eyelids almost swollen shut sometimes. They don't ever seem to go down back to normal. Nothing I have found seems to help (Besides prednisone it seems) My rheumy didn't seem to think it had anything to do with Lupus, but I find it hard to believe since it gets worse with other symptoms of a flare. (fatigue, joint pain) But, I am very new to this.

CanadianGal
02-01-2013, 09:56 AM
Hi there,

I've had this symptom for many years. It started with my eyelids and my Rheumy and eye specialist say it is lupus related. Stress is my biggest trigger. As I said, it started with my eyelids. They would swell until they looked like they would burst. Then I started getting red eyes. The lining in my eyes would swell, you can see it if you pull down the bottom lid. Then it moved to the whites of my eyes (scleritis). Very painful. I go to an eye specialist and she keeps track of my vision(which is 20/20). But when in a flare my eyesight can be poor, they are light sensitive, they water, and my vision can get blurry sometimes they feel like I have sand in them. She gave me Nevanac, it's an eyedrop that is basically an advil for your eyes. This helps a little bit but really there is nothing much they can do because it has to be treated systemically. Steriods work the best to take away the immediate swelling but I've found for me being on methotrexate and azithioprine have controlled this type of flare.
I hope you find what works for you soon. It's a terrible symptom of lupus. I can feel for all of you that are experiencing it.

Mica
02-01-2013, 12:05 PM
I can't say I have ever heard of this, it sounds scary. My eyes get swollen and stuff but I usually just take benadryl, even though it's not allergies, works great for me. Hope it clears up soon.

knxgrl
02-06-2013, 11:54 AM
Mine do this!!! I've had to take a sick day because I just can't handle it!! It's uncomfortable to say the least! I don't look like me at all and it happens often. I go through stages where my actual eyeballs want to explode, i swear. I tried to upload a pic but it won't let me. the eyelids swell starting at the bridge of my nose and that's usually how i can tell a flare is starting - even though my rheum thinks it's unrelated bc my sjogrens cam back negative last yr.