Lips are disappearing!

I know our mouths tend to shrink due to the Sclero but I have noticed that my lip line is disappearing too. I now have a noticable gap in my bottem lip where my lip line used to be now it's gone! I'm not sure I could cope with losing my lips totally like that, has anyone else got this problem. I am seriously thinking about getting my lips tattooed just to keep some sort of outline for my lips.

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Hi Leidydi,
I have the same problem it's hard for my lip gloss and lipstick to stay in my lip line. The funny thing about me though is that I used to have HUGE lips, like bigger than Angelina Jolie's lips lol and I hated them, but now that they are normal size I miss them so much. All the women in my family have large lips so when I look at my mom wear her red lipstick I get so jealous! Lol but seriously I have the same problem I just hate that I have to always look at myself when I apply my lip gloss to make sure it's inside my lipline:)

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I mourned my "lip loss" years ago and decided to focus on enhancing my eyes with subtle.... pretty eye make-up and "snappy glasses". Now, I use a sheer gloss or nude/taupe moisture lipstick and I like it more and worry less about bringing attention to my lip area....make the change (physically+mentally) and you'll be pleasantly surprised!!!
Kathleen xo

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I wonder if flake lips could be made for us. We could have one customed made and it can be attached over our thin lips.

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I miss mine too! I never had full lips but at least I had something! I reflect on those bright red wax lips I used to love wearing when I was a kid! I have also wondered about tatooing lips but It is kind of scary! There is no turning back if we hate it! I hope we can get someone with experience to comment! I'll go with you and maybe we can get a group discount!!!

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I read on one of the newletters from a doctor, connected with the S. Foundation to make sure that one always have some kind of moisturising thing, (i am missing out the word)..
for me, there is little bit of tightening on the lips. what I do is, as my steps to prevent further damage, is continue applying lipstick, every day, and the entire day. I really feel the shark cartilage (i have no idea, where i read that lipsticks have shark cartilage)...in lipsticks helps my lips from any progression. so far so good, please use ....Ow....i got the word i was looking for ...i got it,...it is emollient..
Yaa...make sure u have some emollient at all times. for me, it is the lipstick.
together we achieve more!

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My lips got thin and my whole mouth shrunk. I got lots of wrinkles around my lips and I hate that. I have a hard time going to the dentist. He said my mouth is very small now, and when I had to be put to sleep for some surgeries they said they had a hard time getting the tube into my throat. I never have worn very much make up but when I do wear lipstick I think it looks ugly so I just wear lip gloss or chap stick. I guess there is nothing we can do about it, but accept it. But I like to hear what is working for all of you.
jabe

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I too have a small mouth and my lips are disappearing too, I do use a lip plumber but some I am allergic too. I always try to have something on my lips. I cant take it when they are dry and having a dry mouth too is just irratating to me. I also have wrinkles above my lips and I hate that too... I use a wrinkle cream to help with that I even put it on my lips sometimes.

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I too have a small mouth and my lips are disappearing too, I do use a lip plumber but some I am allergic too. I always try to have something on my lips. I cant take it when they are dry and having a dry mouth too is just irratating to me. I also have wrinkles above my lips and I hate that too... I use a wrinkle cream to help with that I even put it on my lips sometimes.

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My lips started disappearing about 15 years ago. At first I thought I was imagining it as white skin seemed to be taking over my red lips on the edges. Too bad it wasn't a bad dream. Now I am 53 but the skin on my face looks like an 83 year old. Just call me wrinkles!!!

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Hello, My mouth is also getting smaller. My upper lip is pretty thin. When I smile it's almost gone and my front
teeth look big and pushed out a bit. I have the lines going
down from my lips and small ones above my upper lip.
I also have a line from my nose going down to the bottom of my lips. I don't know if it will go down to my chin.
I also have a small ledge and a small black & blue spot on my cheek from falling on my face. I use 02 and a walking stick because I had two falls. Our front yard is all garden with paths going through it. I'm so off balance that the walking stick doesn't help. I might try
a walker. I miss gardening, planting and pulling weeds.
There is a calming feeling when I pull weeds. My husband does the gardening now and he made a sign for one of the chairs saying DIRECTOR - that's me. Like many of you I'm unable to do some of the things that I loved. I just had a cataract removed and next month
I'm having surgery because of my incontinence.

I have been very depressed in the past. I'm doing much better. I don't know where this disease is going to take
me. Right now I'm on a diet that is working for me.
I've lost 22lbs and gave a lot of my clothes away. So
that's a celebration and so far I'm not in too much pain. I also adopted a dog from a shelter and she brings me such joy & laughter. She has some very fine hair that
can mat.She lets me tease her hair and we both can do
it for a long period of time. It reminds me when I used to
card the wool to spin. I'm so impressed with so many
of you who are working on being positive that I'm
trying also. Thanks for all the encouragement.

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I to have lips that are small. My lips use to be very full. I see how I use to look. Sometimes there are a few thoughts of anger and jealousy, when you see some lip ad, someone that has the perfect the look of the way we use to. I know there is no way to go back to we were. I know we can't but it doesn't hurt to dream, then go back to our reality. My daughter is beautiful and doesn't have my genes. Thank God!

I do have to laugh at my situation every now and then. Someone thought I was about 50 yesterday. It made me feel good. We do get a surprise everyday or every other week. Instead of what we hope for, the wicked witch of scleroderma attacks. Then we are on the roller coaster, again. If I didn't laugh on a regular basis, the depression would win and my family is more important than that.
For my lips I use the rosebud salve and it gives extra moisture.
Just think when we get to heaven we will be healed and no more pain. Yea! Yea!

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Hi Leidydi,

I, too, have major lip lines and my original small lips are even smaller. I am single, (husband had an affair with an employee when I was at my sickest), 58, and I guess attractive. The lip and lip line issue is HUGE with me. I feel people stare at that. I'm dating, going out, socializing, but always aware of my mouth. Thanks to this site someone suggested having my wrinkles 'filled' with restylane or jurvaderm or a similar product. I made an appointment with a dermatologist right away and wow! It was GREAT!! He said he has several scleroderma patients that he works with. Now - this is not cheap. I had a decent divorce settlement so financially I'm not on the edge of ruin like many folks are. I'm very lucky.

I am now going to a woman that is a nurse, owns the business and she is incredible. She's had a huge amount of training and continues to seek new information on skin care. She has 2 other scleroderma patients. The office is beautiful and immaculate and the employees are superb. She has the very latest equipment - the pain is minimal. And I feel like a new woman when I leave there. I need the treatments about every 4 months - sometimes three - and I do it.
It is about my quality of life , I believe. I am frugal otherwise and don't spend money on things I don't need. I guess I justify this expense because it helps me with serious self esteem issues and confidence - silly as that may sound. Vain, I know. I'm sure many of you will disapprove and that's fine. We all have different values and lives and priorities.

At any rate, I hope this information is of help to someone.

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I have certainly come along way as far self esteem is concerned. Once I wouldn't walk out the door unless I had hidden every possible flaw that I could. Now it doesn't bother me that I have a black mark on my forehead, that my legs have veins all over them, that my hair isn't as lovely as it used to be, that my beautiful long slim fingers are now long sausages (am so grateful I have my sausages), that I have a crooked smile and little lips. It certainly takes the stress out of life. I guess because I am single and don't date nor am I looking to I'm not as focussed on these things. Its the not being able to do the things that I like to do that bothers me.
But we all do what we can do and make the most of it all. Who knows it might come into fashion to have little lips or no lips (lol). Then we will be the envy of those women with big luscious lips!!!!

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JKVACM thanks for your input on this topic! I have been considering going to a dermatologist to fill in the little lines and such on my chin. I hate them!! The more I try to keep my small mouth shut, the worse they get. Thankyou! Thankyou! I did see a reply on the question of Restylane type fillers from a Dr on the scleroderma.org site. He said it is OK, but I've been hesitating... Nice to hear from someone with sclero who has actually done this!

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Hi leidydi!

Have you eer looked into Parry Romberg Syndrome?
There is a lot of overlap between PRS and Linear Sclero. Just a thought.

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