Clementine

Small Mouth And More Symptoms

22 posts in this topic

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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