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Smaller mouth...inside not out?


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#1 Amanda Thorpe

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Posted 23 October 2013 - 09:34 AM

Hello All

 

Here's my question, can your mouth become smaller inside, less roomy as it were, without having microstomia?  My lips and mouth opening aren't smaller, well I don't think so anyway and certainly not like microstomia pictures, nevertheless I'm sure the inside is smaller.

 

I have started waking up because I am biting my tongue, the edge of it, whilst sleeping. The roof of my mouth seems lower and my tongue seems to take up the whole middle of it, When I'm asleep I can't control where my tongue is at and it slips between my upper and lower teeth at the side of my mouth, especially the left side. I wake up with an OUCH! Can scleroderma be causing this without causing the traditional microstomia?

 

I'll be interested to see what everyone has to say about this because I know that oral/dental involvement is quite common in scleroderma.

 

Take care.


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#2 Joelf

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Posted 23 October 2013 - 10:20 AM

Hi Amanda,

 

Well, I've been having a few mouth/dental problems lately and I do seem to bite my cheek and the inside my lip more often,  but I wouldn't like to swear that it's caused through having Scleroderma; it could simply be a coincidence. I haven't noticed my mouth becoming smaller (some say that could be an improvement! ;) ) but I have suffered with a dreadful virus that caused my mouth to come out in ulcers and I noticed another, fresh one today. :( ( I'm hoping they're not going to flare up again!)

 

On the plus side the extraction I had seems to be healing nicely and the specialist who pulled it didn't mention that my mouth was smaller than average, or difficult to deal with.


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#3 Amanda Thorpe

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Posted 24 October 2013 - 04:38 AM

Thanks Jo! I have another friend with scleroderma and microstomia who regularly bites the inside of her mouth as it's all smaller, inside and out. I certainly don't have microstomia but am sure the inside of my mouth is smaller if that's possible!

 

I hope the ulcers go as they are very painful, I use a product that sticks to the inside of the mouth like glue and covers the ulcer up reducing the pain greatly. Even when you eat and drink it doesn't come off! As you know I can't give you the brand name but it contains sodium carbnoxymethylcellulose and liquid paraffin 47.4%.

 

Take care.


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#4 Joelf

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Posted 24 October 2013 - 08:20 AM

Thanks Amanda; I'll see if I can hold of that product.

 

Mouth ulcers are certainly unpleasant!! -_-


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#5 Jessiere88

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Posted 10 November 2013 - 09:06 PM

HI Amanda,

I'm not sure if you can have the smaller inside of the mouth without the outside smaller mouth as I have both. While I was reading your post I just kept thinking YES! I know exactly what you mean. The inside of my mouth is definitely smaller. My tongue, like yours, takes up my whole mouth and sometimes I become super aware of it and try to manoeuvre it to be more comfortable but feel like it just can't fit.

 

The outside of my mouth has gotten so small that when I got my wisdom teeth out I had to be given a general so they could cut the sides of my mouth to make it open more so they could get the teeth out. I looked a bit like the joker with stitches at the side of my mouth. Lol.

 

It is an interesting question you pose, but one thing I have learned about scleroderma on my journey is that scleroderma does whatever it likes, and that it likes me to be new, different, interesting and baffling. It likes to keep us and our doctors on our toes. My mum sometimes says I swallowed a medical encyclopaedia and like to throw things out every now and then. She and my GP always say nothing is simple with me, and it is so true. So I think it is totally possible for the inside to be small without the outside being small.

Jess xx



#6 Amanda Thorpe

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Posted 10 November 2013 - 11:29 PM

Hello Jess

 

I believe it originated with Amberjolie, here on the forums but someone correct me if I am wrong, who said that we are like snowflakes, every snowflake is different as are those of us with scleroderma. It's like having a tailor made disease, I just wish you could choose your symptoms and eventual outcome!

 

It's no wonder scleroderma is so hard to diagnose, there's no such thing as a textbook presentation or progression so a doctor who knows little about the disease hasn't a hope! This is why it is so important that we be well informed patients, especially if we don't have the luxury of a scleroderma expert. I know that when you're ill you don't always feel able to participate in your care but if you are the one holding all the knowledge you're going to have to!

 

Take care.


Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)