Tight face?

[amberjolie1]

I seem to want to ask a lot if anyone else on this board has certain "symptoms", to see if it's classical Sjogren's, or not.  So I have another symptom I was curious about.

My eyelids seem almost "tight" at times, which I was originally thinking must've been dryness, but now the reason I'm wondering is because when I open my mouth very wide, the sides of my mouth seem very tight, too, different than normal. 

Maybe I'm just being ridiculous and opening my mouth farther than it can go anyways, but where I'm feeling the tightness isn't in my lips but just inside them, as if my lips could open wide without feeling a stretch but my mouth tissues can't.

And the problem with a lot of "symptoms" I have is I can't tell if I've always been that way and am just now starting to think about things (I guess kind of like that post about whether we are hypochondriac; maybe I am), or if these are new things that are cropping up.

Any thoughts? 

[Sha]

My twin, flutterfly, has had symptoms of all kinds for years with no diagnosis. I have had several symptoms throughout the years that were just blamed on other things. When I was diagnosed with sjogrens and had a ton of things going on...I finally put 2&2 together with things that were happening with my body. I believe, from reading all these posts, that yes, ai diseases can bring everything to a head and bring other symptoms out!

I would get it checked out so you know what you're dealing with!

Sha

[LizPetillo]

I've got no idea ... are you on a steroid?  Those really help but they can do strange things too.

[inga]

I have tightness and a pulling sensation around the center of my face.

[Daisy1234]

In my opinion tightness of skin is not a classic symptom of Sjogrens.  It is however a symptom of other AI diseases, such as CREST syndrome and Scleroderma.   I was just told this week that I might have CREST in addition to severe primary Sjs.  I will be seeing my rheumy in January to confirm suspicions.  

CREST, stands for the following:

-Calcinosis
-Raynaud's phenomenon
-Esophageal dysfunction
-Sclerodactyly
-Telangiectasias

Limited Systemic Scleroderma of which CREST is a sub-type affects the skin only in certain areas, which include:

-Fingers
-Hands
-Face
-Lower arms
-Legs.

Many people with limited scleroderma have Raynaud's phenomenon (a disorder that affects the blood vessels in the fingers, toes, ears, and nose) for years before skin thickening starts. Other people with limited scleroderma start out with skin problems over much of the body, which can improve over time, leaving only the face and hands with tight, thickened skin. Telangiectasias (small enlarged blood vessels near the surface of the skin) and calcinosis (small white lumps that form under the skin) often follow. Raynaud's phenomenon, telangiectasias, and calcinosis are the predominant CREST symptoms in limited scleroderma.

You may wish to check this out.  
Daisy

[eyeamdry]

My lips and parts of my face are numb and this is what i think you're talking about.  I also have numbness in other parts of my body (knees).  Numb lips was one of the first symptoms of "SJS even before i knew what was going on.  The numbness is a tingling/burning sensation.  I've been on Lyrica for a year or more and it does help this.  I believe it's neuropathy.  Lucy

[irish]

I was going to mention the scleroderma also. This is another of the connective tissue diseases that affects the collagen or the "sustance" (glue) that holds our tissues together.

When I had my last FANA blood work I was positive for speckled and nucleor. I was reading up on this and one is present with lupus and the other is more related to the scleroderma. I don't sit and worry though cause a lot of stuff that bothers us will be here today and gone tomorrow.

If something continues to be a problem and gets worse it is sure worth telling the doc. Good luck. Irish

[amberjolie1]

Yeah, because I had the "possible CREST" thing going on, anything that even remotely seems like it makes me wonder, especially since I seem to almost always have the nucleolar pattern with the ANA.

eyemdry: My face isn't numb (although my hands get it, so I probably have some neuropathy going on with them); at least not yet, but who knows with this thing?

Thanks for all the answers!