how scleroderma affects the face

I've noticed that most- not all- scleroderma patients have similar face features. For example, if I see someone with thinner lips/nose I'll be able to figure out if they have scleroderma. I'm talking jibber jabber but do you guys understand me? My mom's lips look a lot thinner. Is this a bad sign?

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What you are describing is typical and a common feature of the disease. I don't think it's necessarily a bad sign but rather characteristic. The skin tends to get tight and stretches. For me it was one of the earlier signs of the disease. Because of the skin tightness, the mouth becomes smaller, so I need to take smaller bites of food. Sometimes the skin gets so tight that the lips don't touch anymore. Yes your observations are correct. I can usually guess that someone with this appearance has scleroderma.

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Personally, I'd think it's worth checking out ... if it's obvious her lips are thinning it may suggest her illness is progressing

If she writes down her new symptoms as they come it would be good to add ... I found if I went to the Rheumi's without a list I'd forget to mention my mouth shrinking because I were focusing on the painful symptoms at the time

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I to have this disease in my face.My mouth is smaller so I have wrinkles around my mouth. I can't whistle or have a seal around a spoon or straw and I have to take smaller bites of food. At night my mouth does not stay closed so I have dry mouth ,but I came up with wearing an ace bandage around my head to keep it closed , It works ! My grandkids think it looks funny but who cares as long as it works. One good thing about this is that I am 54 and will never have wrinkles around my eyes ! And I have small scares on my cheeks and forhead but I wear med. coverage foundation to cover this .

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here is a link
http://www.scleroderma.org/medical/facial_articles/wood_2002_4.shtm

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My mouth is alot smaller too and has been for awhile. My lips are more thinner on top and sometimes I use a lip plumper but some of them I am allergic too.

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I have the same problem. Isn't going to the dentist fun! I have a lady dentist with small hands which helps.

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Yes, I have the same problem. Small mouth, thinner lips- so no more lipstick, I eat small bites, hard to use the straw and no more whistling. Of course getting dental work is a big problem. I had to get one tooth extracted, due to abscess, so my dentist send me to oral surgeon. I invested in water pick, which is really good, because you can really clean your mouth well after meals.

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HAHAHAHA What lips? I don't think anyone can see my lips unless I open my mouth a little bit. I don't bother with lipstick anymore, I'd have to draw it on my face like a clown.

I try to get a good hair cut with bangs to draw the eyes upwards HAHAHA, maybe soon I'll need to get a really festive hat to detract people's gaze!

I definitely understand what you're talking about with the thin lips.

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I have/had rapidly progessing diffuse systemic scleroderma. My face was as hard as a rock and my mouth opening was so small that I could not floss. (got a water pic).

Now, all the hard skin is gone and my mouth opening is normal--still use the water pic, tho. Except for the wrinkles around my mouth, you would never know I have/had Scleroderma.

I did have some juviderm injections (against the advice of my Rheumy) and that helped fill in some of the wrinkles.

Next step, face lift!

You must remember, tho, I am very close to remission or I would never have ventured out to have injections in my face and I would never recommend it, but glad I did it.

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Hi Everyone,
I an newly diagnosed woth Scler. I have had RA for many years and had thyroid cancer in 2001 for which I had a total thyroidectomy.Thank God I am cancer free. I am a retired RN and have done allot of reading etc about Scler. I self daignosed myself before I saw the MD. She comes to visit at the house because I am wheel chair bound and it's impossible to get into her office. This is so frustrating. She agreed that it was Scler. I had blood work, My Ana was negative but Ra was very high. So far my symptoms are swollen tight legs. I am starting to deleop the lesions on my lower legs. I have severe redness itching and burning,feels as if I'm being stung by many bees. I'm on Prednisone and myThyroid med. Can't take anti infamatory or pain meds because of severe reactions. I also have the bent fingers, from the RA.So far I'm able to cope with the symptoms.
Would like to hear from any of you who also are unable to take pain meds. How do you handle it?
God bless you all

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hi, I am glad to meet you. I also am a RN, since 1969.
I have 7 grand children, and have worked 30 years in the same medical office. The diffuse systemic SD was diagnoised about 15months ago, when I thought I was going crazy with all the symptoms and pain. A young bright internist dx it, and sent me to rheumy. I have done really well on prednisone 5mg per day. My pain all but left. Unfortunately the SD has made my stomach lining bleed, so I really have to watch it. Mayos saved my life last easter week. Anyhow, I cannot take pain pills because they all make me vomit.
I am getting off the pred slowly and started placqenil
but can tell my hands are starting to sound like your description alot. it makes me nervous, I don't want to go backwards, its so limiting. I am also a cancer survivor from 2006. This is not the golden years my husband and I thought. What kind of work up have you had, and I can share my thoughts.
My blood tests have all been pretty negative, but I have all the symptoms. We were exposed to vinyl chloride through our private well, is how I got the SD.
Its so good to talk to someone who has this.
I am sorry you are in a w/c but you sound like a fighter to me.
please write back. pieplate

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It seems everytime I log on I see more and more of myself...I was ds april 08. I have been having numbness and tingling on my upper lip. I think I just now are beginning to understand why.

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I look nothing like I used to. There are some positives. The dark circles and bags under my eyes are gone and I have very few wrinkles for an almost 50 year old woman! I tell people that people pay big bucks for collegan injections and I have them for free LOL. My mouth is much smaller and similiar to what you all have described and yes I think we all look alike. In fact the woman on the front page of the SD magazine that came out a few months ago looks very similiar to me....my boys freaked out when they saw it.
Karen

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Hello,

I am wondering if anyone has a swollen or puffy forehead with tightness in the cheeks. Thanks

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I too have the symptoms of the mouth getting smaller and wrinkles there but my forehead is smooth and i dont have many wrinkles around my eyes. people never guess I am almost 62. Now that I look back and having taken care of mom as she passed away, she certainly had raynauds and scleroderma only no one dx'd her with it because she had other issues. Is this a genetice thing. My daughters both have factor 5 Leytons, a blood and/or lymph problem. I do not have that. My oldest daughter has a problem with cysts popping up everywhere on her body but nothing has been malignant. My youngest died 4 years ago from malignant melanoma, a mole on the bottom of her foot went bad. Any one know anything about this disease. good luck paula55

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I can't say its a _good_ sign of course, but it does NOT mean that there is any internal involvement or anything else. It does mean that its "active" and she needs to keep close tabs on herself and go to the doctor frequently! But it may only mean that there is skin tightening and that needs to be treated so it stops. I hope that helps answer your question.
makeup tip: I've gotten good with this haha, lip liner around the lip partially on the lip and partially off. Then at lipstick. I like covergirl 8 or 12hr ones.

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Yes I have to take smaller bites of my food and sometimes feel embarassed about it because sometimes I miss my mouth due to my hand not being able to bend like it use to. Also eating a hamburger when I do which is not often, but it's just not the same anymore.

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