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Mouth changes?


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12 replies to this topic

#1 gatorfan

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Posted 26 April 2008 - 05:11 AM

If you are dealing with changes to your lips, how did it start? What did it feel like? Are there any exercises or treatments to slow the progression? Thanks!

#2 Sheryl

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Posted 26 April 2008 - 05:29 AM

Hello Gatorfan. You might just be from Florida? Welcome to our forums. My mouth started shrinking with no actual pain. My family members noticed many wrinkles around my lips for a few weeks then all of a sudden all the wrinkles were gone and my lips were now quite a bit smaller. My family doctor told me to really accentuate all my vowels. Stretching my mouth as long and big as I could while pronouncing each one slowly. You can do this while relaxing or even driving down the rode. I do this several times daily. Also, running your finger around your lips and around your mouth on the inside, pulling and stretching at the same time. Those are the only mouth excersizes I was given. Others will pipe in soon. Ask any questions you need answers to. We do the best we can by providing details of what we have been through or are going through at the moment. I look forward to hearing more from you.
Strength and Warmth,
Sheryl

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#3 Guest_Sadie_*

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Posted 26 April 2008 - 07:19 AM

Gatorfan, Welcome to the board!! This is a wonderful place!! My skin on my face is tight so I can't close my lips together because of it. I do the face exercizes that Sheryl was talking about. Also,I've been putting vaseline on my lips and my gums in the front since they get pretty dry. If your mouth ever starts getting very dry, you can get a special mouth spray from the dentist called Thera mint. It helps moisten the mouth.

Sadie

#4 lizzie

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Posted 26 April 2008 - 08:17 AM

Hi Gatorfan, I started feeling (and still have) tightness in the area around my lips and cheeks- rather like the sensation you get if you use a face pack. My lips have got slightly smaller but I do mouth stretches several times a day ( right thumb in left side of mouth left thumb in right side of mouth and pull!). I also make exagerated vowel sounds ( A E I O U )- but without actually making the sound. I think it has made a difference as the rheumatologist has particularly remarked how my mouth hasn't really shrunk despite the tightening on my face. I also talk a lot!. I used to chew gum both for mouth dryness and because it keeps my mouth moving but have discovered that was one of the causes of the nasty bowel pains I was experiencing so no longer use that. I have read a medcial journal paper that has looked at the effect of mouth exercises ( similar to the ones I do) on increasing mouth aperture in Italian ( I think it was italian) patients. It did improve their mouth opening.
This is a subject which I think is very much ignored by the doctors. I know its not actuallly life threatening but it is a big issue to those of us with SSc , both cosmetically and for the effect is has on dental and nutritional health. I'm convinced more can be done to prevent/ treat it. I'm sure that I have said this before , so excuse me banging on, but the fact that some tribes can expand their lips using wooden lips plates , makes me think that some device could be developed to increase mouth opening in those with SSc. The doctors use bougies to stretch the oesophagus. Its the same principle. I think it would be a really good project for research in dentistry. Am going to ask my dentist his opinion re the feasability of developing some device next time I see him. Will now climb down off my soap box
Lizzie

#5 scampie5

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Posted 26 April 2008 - 08:43 AM

Hi my lips started to get small tears at the corners very painful and lines on the upper lip I noticed it before being diagnosed and thought it was some thing to do with getting older I try and strech it doing exercises that the specalist showed me how to do Lynn

#6 Vicki

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Posted 26 April 2008 - 10:05 AM

Hi, I am newbie here and was so pleased to see something posted about the mouth. I have had the deep lines around my mouth and also numbness in my upper lip. I have tightness on the left side of my face. Does anyone experience any pain and soreness around their eyes and cheekbones? I have an unusual sensation around my eyes,but can not explain it, wondering if that is part of the disease. I will take the advice and try doing the exercises. Thanks to all who have posted this information.
Vicki

#7 truman

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Posted 26 April 2008 - 10:13 AM

Good thread lizzie. Even with what the kids are doing with those large pierce ears. They're the size of quarters. Would be a very good question to ask.
Tru

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#8 Sweet

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Posted 26 April 2008 - 10:36 AM

Hey gator,

Welcome to the Sclero Forums, I'm so glad you've joined us. I am having only small changes right now, but what I have noticed is I am unable to open my mouth veryy far, nor hold it open for the dentist. My upper list is getting thinner as well.

Here is a link that discusses microstomia (small mouth) that you may find helpful.
Warm and gentle hugs,

Pamela
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#9 Sweet

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Posted 26 April 2008 - 10:36 AM

Hello Vicki and welcome to you too!!! Hopefully the link I provided with help you as well.
Warm and gentle hugs,

Pamela
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#10 Sheryl

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Posted 26 April 2008 - 10:42 AM

Hello Vicki,
Glad you jumped in and started asking questions right away. I don't have the tightness or soreness around my eyes. My eyes have a heavy feeling, like small weights. My lids can't stay open when I am in one of the fatigue peroids of this disease. I have had several months with no severe fatigue or face tightening going on. We all look forward to the quite times when nothing seems to be damaging us. I hope you enjoy the sclero forums as much as I have and enjoy making new friends within this group. I have limited SSc so most of my damage goes on internally. Learm your way around the forum and ask any questions you feel comfortable asking and we will do our best to satisify your curiosity. Welcome Aboard. Tell us something about yourself and where you live. I am from Michigan.
Strength and Warmth,
Sheryl

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#11 lizzie

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Posted 26 April 2008 - 11:41 AM

Hi Vicky, I do get feelings of tightness round my eyes, but is not there contantly. I also frequently have very red rimmed eyes.
Lizzie

#12 janey

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Posted 26 April 2008 - 11:54 AM

Welcome Gatorfan and Vicki!
Glad you both have joined us. I, too use to have small mouth, but that was one of those symptoms that eventually went away. I did do some of the exercises already mentioned which I'm sure helped. Unfortunately, the lips disappeared with the small mouth and left behind the deep lines perpendicular to where the lips use to be. The lines do disappear when you smile, so I try to keep a happy face. :)

Big Hugs,
Janey Willis
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#13 Vicki

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Posted 26 April 2008 - 02:02 PM

Hello to all,
I am retired as of 2006, my disease was diagnosed in Nov. 2005, but think I had been ill for sometime before then,,,,I passed it off as arthritis until the inflammation and fatique became so bad I consulted a rheumatologist. I have lots to learn about this disease, but have bought a couple of books and trying to learn to cope. I was diagnosed as having diffuse type.

I am married and have two children and three grandchildren. I am from Kentucky.

Thanks for sharing your information,
Vicki