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Hi

Just wondered if anyone else suffered from extreme swelling of their face.

I was feeling slightly better today and someone commented how my face looked normal now the swelling had started to go down!! I guess I have gotten used to how swollen it is. It is always worse before/during a flare. On Sunday it was so bad my eyes were like slits, I could hardly see.

I would be interested to learn if others have this or if I am alone with this weird symptom.

Leaving now to look for balaclavas in pink to hide my swollen face!!!!!:rotfl:

Deb
 

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hi deb yes sometime i get some facial swelling
ususaly around my mouth and mainly in the mornings if it is happening
i think it is just one of those things for me that i have to learn to live with
i sometimes dont notice it myself other people will mention it
alex
 

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Hello! I can get a lot of swelling around my eye-sockets which makes my upper eye-lids non-existent and the lower ones all puffy. Then my eyes are like slits and I look like someone with extreme hay fever - very fetching! For a long time I thought it was due to the aging process (I'm now 55) and one very unhelpful person suggested I needed a "lift"!
Since then I've found out it is due to Lupus. When the disease is better controlled my eyes reappear. Yet another bizarre thing!
 

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This is really interesting. I'm undiagnosed, but one of my friends has said for years that she can tell how well I am by the shape of my face!
 

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Prednisone???

Dear Deb,

Are you taking prednisone by any chance? This is often a side-effect with long-term usage ("moon face"). Just a thought. Happened to me when I was a child diagnosed with hemolytic anemia and was on prednisone for a year. It did dissipate after predisone was discontinued.

Sorry to hear about this symptom--makes it hard to hide it when you are aren't feeling well. Just ignore those insensitive folks.

Monica
 

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im swelling in face but am on prednislone are you?? :sad:
 

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Hello! The swelling around my eyes and upper face is not due to Pred. In fact Lupus treatments, including Pred, bring the swelling down. I was really excited the first time it was reduced and kept looking at my "new" eyelids with amazement! It made my GP laugh. I have been told that my swelling is due to inflammation of the muscles in the eye sockets that control the movements of the eyes.

I also get swelling at the sides of my face as I get a lot of inflammation around my jaw joints (TMJs). Sometimes my salivary glands swell as well due to Sjogrens disease. The possibilities for looking a bit odd are endless!
 

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Thanks for replies

Lin and monica I am not on pred at mo.

Phlox that is really interesting about the muscles. I get inflamed muscles in arms and legs and I have trouble with my eyes from time to time with twitching, drooping and heaviness of lids. Had never connected it before.

I also have swelling of all facial glands I look like I have mumps most of the time. I dont know why that is. The rheum just says thats interesting and comments on how dehydrated I am?!

When I was on pred I had a moon face as well as swollen glands and eyes and neck. I looked .... interesting!!!

Again thanks for replies. It really helps.

Deb
 

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Deb, that swelling near your jaw that you describe could be due to Sjorgen's Syndrome. Do you have dry eyes and/or a dry mouth? Has your dentist ever seen those lumps and thought it could be salivary glands? Sometimes, they need to be looked into by an oral surgeon...
 

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debatat,
You are not alone. I have swelling in my face, hands, and legs all the time. My doctor has me on fluid pills just for this reason. I have to self adjust the dosage depending on the amount of swelling that day. It is not fun to be a blow fish most of the time. I know it is not joking matter, but can't help myself. If I don't laugh then I cry and really don't like to cry it just makes it worse. Just know that you are still as pretty either way. As long as you don't make a big deal of it most others won't either.
Tammy
 

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Hi

Tammy you made my day with that blowfish thing. I laughed out loud. Thank you. x

Maia, I do have an extremely dry mouth and it is getting steadily worse. Funnily enough my dentist wants me to mention to rheum some swelling that I have in my mouth that he says is caused by my immune system. I forgot at my last appt, so have started my diary again so I am better prepared for my next appt.

Thanks for your replies

Deb x
 

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Hi Deb,

Not really but just a little below my eyes. It clears quickly. For me it is more lymph node swelling in random areas around my body and my left leg from the knee down.

It is a mystery.
 
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