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Clementine

Small Mouth And More Symptoms

22 posts in this topic

Hello,

For those of you with small mouths because of sclero, how long did it take for you to get this symptom? My lips have gotten dry, tight and my mouth is already definitely SMALL...but I am pretty sure it's getting even smaller. Also, I have been getting food caught in my throat a lot lately. I know to do the exercises, etc...but just curious. Sometimes I wonder if I am just "seeing" things. I've also been full after eating small quantities. I'm wondering if my disease is "active" more now or something. I am also very drained lately.

 

PS: Had my final laser today for red dots. Pretty sure it was a bust. This was the 4th, and my dermatologist said he's never seen them be so stubborn. Ugh...I tried. I bet he's never had a sclero patient.

 

Thanks!!!

Tangelo

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My mouth is getting smaller thanks to the sclero and have already had to have my esophagus dialated. (diag. diffuse sclero 01/04/07). My lips are also dry and cracking but I thought it was just from me chewing on them. (bad habit), never considered it to be from the sclero. You may be right about that. The dryness you are experiencing may be Sjogren's. Have your doctor check. Since this condition manifests differently in all people it's a good idea to keep your doctor updated on any changes or symptoms you are having. Fatigue seems to plague all of us and other than resting I haven't found anything to help that.

 

You mentioned exercises- what kind are you doing if I may ask. I'm always looking for new suggestions in addition to my stretching in the shower. The hot water helps me tremendously.

 

Sorry to hear that your laser treatment isn't producing the results you wanted. Those red dots are a pain. I can't afford laser treatments and just have to rely on more makeup. If it keeps getting worse, I'll need a putty knife to apply my cosmetics!

 

Hope you can get some answers. There are a ton of people on this site to help. They've all helped me in one way or another.

 

Good lucks and warm hugs are coming your way! - TJ

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Tang,

Small mouth and trouble swallowing was one of my first symptoms. It lasted about a year and then improved almost back to normal within months after starting medications. When I had to go off immunosuppressants for 5 months this year it started coming back, then improved after starting cellcept.

 

I'm so sorry the laser treatments haven't worked for you. :( I know you had to try, but let me say that you are so beautiful inside and out so it doesn't matter to us.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Tangelo, I started with dry/cracking lips earlier this year which didn't seem to get much better even though I was using lots of petroleum jelly and other lip balms on them. I also felt that my mouth was getting smaller but like you didn't know how much I was imagining it, I also had tightening of the skin of my face. I started doing facial exercises ,paying particular attention to the mouth stretching. In my minds eye I had a picture of the African tribe (I don't know which) that stretch their lips using mouth plates, and thought that if it worked for them, mouth stretching could also work for me! I did feel that my mouth did look bigger , but in the absence of objective measure couldn't be sure. However when I saw reheumatologist a couple of weeks ago he particularly remarked that although my facial skin was tight my mouth had not got small, so now feel that it has made a difference. Anyway will keep on with the stretching ( I do it several times day) as nothing to lose - unless I end up like a wide mouthed frog!

 

Re the swallowing, I find the 'catching food in the throat' symptom comes and goes, can be like that for a few days then just when I'm begining to think that this is going to be a permanent thing, it disappers again to the extent that I even can eat things like crusty bread and toast. Its a mystery why !

Lizzie

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Hi there Tangelo,

I am sorry to hear that you went through all of that trouble to have the red spots removed and it didn't work. Another member here had the same problem, I wonder if another type of treatment would be more appropriate for Scleroderma related skin problems.

 

Has your dermatologist done an initial measurment of your mouth? I dont remember, are you taking any medications for Scleroderma symptoms at the moment?


*WestCoast*

 

********

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Hi Jen,

 

My small mouth snuck up on me. I didn't even notice anything until I tried to make a fish face with my son one day and I couldn't. (where you suck your cheeks in) :rolleyes:

 

Anyway, once my rheumatologist pointed it out to me at my first appt. then it was painfully obvious to me and it has gotten worse in the past 2 years.

I have hope that once I lose some weight and hopefully can get completely off pred then it won't look so bad.

 

Stretching does help. Sounds dumb but I will buy myself a tootsie pop sucker when I get one for my kids because it is just the right size to stretch my cheeks from the inside :lol:

 

I have noticed more T-spots appearing on my chest but some days they are more visable than other days. Does that happen with your spots too?

 

So sorry your laser treatment was a bust. But like others have said, you are beautiful inside and out to us!!!

 

Love you,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hey Jen,

My lips started shrinking too despite that I keep stretching them. I can always tell when mine are shrinking because the corners of my mouth rip. It really hurts but it shows that my mouth is trying to open like it use to... but can't, so that just means more stretching and lots of chapstick. Actually, aloe and vit e oil seem to heal those rips nicely.

 

I'm sorry to hear you're tired. Have you talked to your doctor recently about your disease progression?

 

Sad, I'm sorry the lasers were a bust. Lame. All that work and bruising for nil. Well, you are beautiful spots, lasers and all

 

hugs,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Tang and all of you other beautiful ladies! The same as Janey and others, my small mouth started early on, it's raised some issues for me as well. eating, dental work (although not a fan of it :blink: ), etc. I have to admit, that I haven't done the stretches, but I can see how they would really help. I have "puckering lines around my lips too, which isn't very nice, either.

I would like to get some vanity back, so I'm planning on a makeup session at Dillard's, along with a spa day (massage, etc) with my step-daughter, who needs a pick-me-up. My birthday is next month, so I'm hoping to get this day for us girls as my present ;)

 

Also... the "T-spots" aren't nice, either! A (young male) rheumy I went to at the onset of my sclero... suggested that I get the lazer treatments (from him), but I never did. Oh well...

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I have that too and now for the past week and half I feel like I have stick in my throat and when I take my med at night it doesn't feel like it has gone down. So I have that and on top of that reflux lately, plus going through something with the epidural shot I think. I'm burning up all the time. And sweating at night, and I have had a headache everyday .,


Sam

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Thanks everyone, sooo much.

 

I don't have any "real"mouth exercises...but I'll put a ton of moisturizer on my lips and stretch them.

 

I haven't talked to my Dr. about what I'm feeling. The disease is going to naturally progress so I kind of feel like I just need to grin and bear it at this point. Then, there is part of me that thinks I have probably always been this way but chose to ignore it, and maybe right now I'm just having a reality check. I mean, what else is there I can do? I don't feel there's much I can do at this point. I'm already treating everything I can. I am taking the highest dose of Cellcept. At this point, I am just ready to accept it, deal with it and move forward. I am really depressed after today's meeting and having scleroderma shoved in my face again. Fortunately, I have a therapy appt. on Wednesday.

As far as the GERD being aggravated, I did quit taking Zantac at night per my Dr., but I see now that I probably need it. I do count my blessings in that I do not have pain like so many of you, and for that I am grateful.

 

Does anyone take 80mgs of Nexium? I currently take just 40mg.

Then today, after I had the worst chills ever, it really made me upset. I literally had chills, with frozen hands and feet on top of it. I guess I do need to up the Norvasc.

 

I am sorry for all of you suffering with the small mouth. It is not fun.

 

Thanks for listening...I am obviously having a bad night.

 

Tangelo

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Hey Jen,

 

My small mouth kinda crept up on my too. I knew it was getting tighter, but it seemed like just one day all of a sudden I noticed the ugly purse lined mouth. That is the part I dislike most of all. Seems unfair. We get a free eyelift, but a witches mouth. I also try to stretch as best I can, while I'm watching tv. I'll open my mouth as wide as I can and hold it, and then when that feels like it "gives", I stretch it just a little more. I also puff up my cheeks and hold that and wait for it to "give" and try to add more air. :mellow: Ohhhh, the girls just love to watch that one.

 

Barefut,

 

You can still fit a sucker between your cheek and teeth? Wow, I wish I could, I've tried. We give them out at work to the kids, and I used to like to suck on them, but now I can't close my mouth if I put one in it, so I don't think my clients would appreciate me drooling on their heads :blink: I've often considered getting restyline(sp?) injections, but they cost so much, and they don't last forever, so that would be a waste. So I just try to smile alot, it's the only way I can make the lines go away.

 

Oh yea, after my "stretching" sessions lately, I've been able to squeak out a little whistle! Losing my whistle was one my early symptoms, so for me to squeak one out gets me all excited. I was so excited about it one day that I had to call my hubby at work, As soon as I heard his voice I started whistling, which to him just sounded like a lot of blowing air on the other end of the phone. :huh: But he was glad I was excited about it.

 

Keep stretching!


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Vee,

 

Your posts crack me up! I can still whistle but not like I used to. As for the sucker, I can't close my mouth around it either, I just push it into my cheek and it feels good to stretch like that. Then I throw it away since I can't actually finish it without a bib.

 

I got a sucker from the drive through at the bank one day, along with my kids and was drooling on my shirt in the car. My kids thought that was funny.

 

B


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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:o Hi, I too have the "small" mouth syndrome - if you can call it that. Don't even think about whistling for the dog to come in at night. Not happening there! All I get is air. And I get ulcers in my mouth alot more than I would like. The food getting stuck isn't fun either. I gagged on a piece of candy last week. I thought my son was going to do heimlech. He was across the room and moving quickly as I was digging at my throat. That I think was the worst I have ever had it, even worst than choking in front of people that I work with. They are more afraid than anything, even strangers. Ever notice that strangers do nothing.

But the new thing, and my husband swears I am reading into it, is that my tongue is hardening. I am having a hard time talking. I am literally choking on my own words at times. Now that is a joy. I really thought that would never happen as I love to talk. This I must say is scary. Even having people finish my sentences for me. Has anyone else had this happen to them? Or is it just me?


I hope that your day goes well and you don't have any worries.

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Hi again! Kristin, I know exactly what you mean, when you talk about your tongue hardening. I have trouble enunciating, so the words "slur out" :blink: .

When visiting with my mother, who has early stage Alzheimers... I will say something and she'll "repeat" what I "just said"... almost turns into a Laurel and Hardy bit :P . Some of the things she'll have heard me say aren't even close to what I said, plus they're so funny, that she and I will have a good laugh once she finally hears what I actually said!lol

 

Anyway, I just wanted to let you know that I experience the same thing, where the tongue is concerned.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Nice to meet you Kristin!

 

What I don't really understand, even after almost three years of researching scleroderma, is why does the mouth shrink? Here's the deal..I know I have a tiny mouth...it looks small and my dentists (at least four) have told me it is small. I don't have skin involvement because I have sine scleroderma....so why is my mouth small?? Genetics? I always thought that the mouth got small because the skin was tightening. I guess there is just so much I still don't understand about sclero. I can attribute my lip lines to years of baking at the beach. Ugh, why did I do that!

 

What do you all think?

Tangelo

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I have a question....

 

For those with the small mouth, do you feel stress in the bones of the face and the jaw? I know my mouth is closing even though you can't see it yet, but I feel something like a weight in my face and mouth. I don't know if my mind is playing tricks on me or if this is the way it feels. Also with this is the problem swalloing. It feels like I have something stuck in my throat.

Any thought??

Thanks,

 

Ani

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Tang,

What does the mouth get small? Here's what I found in our microstomia (small mouth) section:

 

Microstomia is the term used when fibrosis causes the skin around the face and mouth area to become hard and tight. Movement of the tongue may be impaired as well.

 

I always assumed the vertical lines formed because of an uneven tightening. My lips shrunk more than the skin around then (in fact, I have no lips), thus the lines.

 

Ani,

All my facial bones were sore and my jaw hurt when I chewed, which I had to do a lot of since I couldn't swallow. Things are better now, but I still have to eat in tiny bits, but at least food doesn't get stuck anymore (not as much anyway).

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Jen,

All of this is quite interesting, when I first saw a rheumatologist this year - March, she mentioned to me that when she first saw me she thought I had the 'typical Scleroderma mouth". I have always had a small mouth though and never thought much of it until that remark was made. I have noticed though that when I open my mouth wide it feels like my top lip is going to split in the middle. Also, when I run my tongue under my lips inside my mouth, parts of my lip and skin feel as though they are being stretched and are going to split. Does anyone else have this?

 

Regarding the Nexium, I put up a post a couple of days ago about this and the dosage. I saw my rheumatologist on Monday and mentioned to him what was the maximum amount of Nexium I could take in one day ( I had taken 80mg in one hit, to stop the reflux). He did say that some of his patients that were hospitalised for ulcers were taking between 100mg - 200mg a day, but I should only take 40mg twice daily for reflux. You do need to though speak to your doctor about this to be on the safe side.

 

Take care

Celia

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Kristen:

 

I didn't want to mention the tongue because I didn't want everyone to think I'm just crazy. Right with the tight face and small mouth and the something stuck in my throat is the hard tongue too.

 

You think you have problems pronouncing words? Try speaking with an accent, now I know people won't be able to understand anything I say...

Ani

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Janey,

I do not understand why we (you and me) have Microstomia when we have sine scleroderma. Wouldn't that mean we'd be sans the facial tightening? I have no lips and I have lines, but I don't notice any facial tightening.

Thanks,

Tang

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That's a good question! The skin's not hard or tight around my mouth and it never has been, but my lips still got replaced by those deep lines. Oh, well - we'll just have to keep smiling I guess. That way, no one notices but us. :D

 

Lots of Hugs to ya,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Ani,

 

I don't know whether to cry for you or laugh along with you. You know sometimes I do both. This just gives me validation that I am once again not crazy. When we eat out in public, I have to choose my food carefully and get ALOT to drink so that I don't get too much caught in the sides of my mouth. Do you know that when I was in college I used to do stupid party tricks like see how many oreos I could fit into my mouth at one time? And yes, if you are wondering, the most I could fit was 32 oreos! Now I can't even fit one whole oreo!

 

Anyway, my husband kept telling me that I was reading too much into this and now I know that I am not. I am going to show him this. Don't get to prove him wrong too many times. Makes me feel good about it for something.

 

Kristen


I hope that your day goes well and you don't have any worries.

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