Who has problems with their mouth with Scleroderma?

[Irene55]

At the beginning of this year among lots of other problems I noticed that I had difficulty opening my mouth. In April I was diagnosed with Scleroderma and Polymyositis. It was then I discovered the mouth problem was caused by Scleroderma. Since then I exercise my mouth and face, but what I would like to know is how wide should we be able to open our mouth. It is something I never needed to know before. At the beginning I could get 2 fingers in my open mouth now it is 3. This might seem a silly question but what experience have other people had?

[zenabb]

I noticed the reduced size of my mouth when I went to the dentist and he had great difficulty taking a template of my teeth. Also one of teeth has gone over its neighbout a little. I don't how big your mouth should be, probably big enough for the dentist to manage. It is a good idea to exercise your mouth, I hadn't thought about that. Thank you.

[Irene55 in reply to zenabb]

Thank you for answering. I had an appointment with Professor Denton in the Royal Free Hospital and his nurse gave me a paper with some exercises for the face and mouth. Maybe you could contact the Royal Free or your own doctor and get this too.

I never get my mouth any bigger but if I don't open my mouth as far as it will go several times a day it seems to get tight.

[living-the-dream-ssc-ray]

I have been seeing the magic man Prof Denton for 14 years so Irene you are in brilliant hands (Im sure you know this !). I have noticed that my ability to open my mouth wide is a struggle for me, more so in the last few years. I have to go to the hygienist every 3 months as I have great difficulty inholding a tooth brush and it really is a huge effort to keep my mouth apart for 30 seconds, never mind a few minutes ! Luckily my hygienist and dentist are used to me and are very patient and understanding !

However, in the last 6 weeks I have been experiencing excrutiating pain from my ear to my jaw on the right hand side of my face! I have had 2 weeks of high strength antibiotics which have marginally eased the pain however, it is still very painful for me to move the right hand side of my face and in particular my mouth, so eating and talking is very difficult ! I have been told that I have gotten cold in my ear which has activated the nerve with the jaw joint hence the pain ! and to keep it warm and rest it ! I am sat at home under house arrest dressed as an eskimo!

I have never experienced ear ache like this ! Has anyone else had this? Im now having to wear hats with flaps to cover my ears even in the house ! wehoo living the dream

[Irene55 in reply to living-the-dream-ssc-ray]

Last winter I started to get pain on the right side of my face and at night when I was in bed I used to feel heat on my face, almost as if I was sitting next to a radiator. At times I feel as if I have cotton wool in my head next to my right ear. Since I have been taking medication the pain in my face has almost gone but the strange feeling is still there.

You are right about Professor Denton, every thing I had written down to talk about he asked me without any prompting. I wish all doctors were as good. But he is the expert.

[eletra in reply to Irene55]

I would be very interested to know what medication the prof has given you, as I have the same issues wit my mouth? Michele

[sgbee]

Do you guys mind if I share a funny story about the small mouth thing? Before I knew I had scleroderma, when I would eat, I would stab the side of my mouth/face with my fork. WHAT was that? I reasoned out later that my brain had to get used to the idea of the shrinking mouth--it was sending the fork to where my mouth USED to be! This happened on and off as my mouth grew smaller in increments. Scleroderma and its compatriots certainly keep us on our toes!!!

Now the main thing that annoys me is the puckered look of the skin around the mouth. And the dental appts ARE painful!! But we adapt, don't we?!

[Irene55 in reply to sgbee]

What I noticed first was if I went to eat a banana. I couldn't put it in my mouth. I had to eat it sideways like a beaver.

[joba in reply to Irene55]

What I noticed was I can no longer drink through a straw!

[sgbee in reply to joba]

Yes, I sort of dribble when I drink now because my lips are so very thin. *sigh*

[joba in reply to sgbee]

I also hate the puckered look around my mouth! It so ages me. Also, luckily, my dentist is very good and patient with my small mouth.

[Leann in reply to joba]

I also have the pursed lips. Some think I have wrinkles around my lips from smoking, hate it!! Going to the dentist is very painful due to small opening. Anyone know what causes the pursed lips? No one has been able to answer this question for me,

[sgbee in reply to Leann]

It is officially called "microstomia". Let's see if this link works: scleroderma.org/pdf/Medical...

My doctor actually used to measure how wide I could open my mouth for awhile. I brush my teeth lots in the day to try to ward off any extra cavity issues because I hate having my mouth worked on now!!

[joba in reply to Leann]

I have had people actually tell me the lines are from smoking too! I argued with them that it is from the scleroderma, but I don't think they believed that. I know it is, because it came on so fast (the lines), not gradually as one ages. I don't know what causes the pursed lips either.

[mirandamae1971 in reply to sgbee]

I had the same issues, I couldnt figure out why the spoon wouldnt go into my mouth right and why did the normal amount of food all of the sudden fall off og the utencils when i tried to put it into my mouth... and why in the world would the more liquid things end up coming out of the side of my mouth... and why in the heck was i all of the sidden drooling out of the side of my mouth.... thats when i realized that not only was my mouth getting way smaller really fast... but i also discovered that i had sometime had a bells paulsy spell. I still have all the damage and issues but we are very adaptable and i have learned to adapt pretty well. Although my kids cant figure out why my lips always seem to be "pursed"....LOL

[joba in reply to mirandamae1971]

I was sooooo embarassed when drool started to come out of my mouth on it's own! Now I'm a little more careful about opening my mouth too soon, which seemed to make it happen. Hate the pursed lips also---makes me look so old!

[Roamer]

I have scleroderma and my mouth is getting smaller. Bananas starting to become an issue here too. I'm trying to stretch it, but look like a fool (sorry to anyone who spots me through their rear view mirror when I'm doing exercises in traffic!).

[sgbee in reply to Roamer]

(that is a person with glasses smiling!)

[Jen3131 in reply to Roamer]

I do facial exercises whilst driving every day - good use of travel time! Just hope no one sees me lol

[mirandamae1971]

So what excersises are you doing? I really would like to do that as well....

[Irene55 in reply to mirandamae1971]

Look here for some facial exercises. This is basically like the leaflet I got from Professor Denton's specialist nurse at the Royal Free Hospital.

livestrong.com/article/1812...

sclerodermatt.org/articles/...

[mirandamae1971 in reply to Irene55]

What a blessing this will be, THANK YOU SO VERY MUCH! I was stretching around my mouth with a hot wash cloth but I wasn't sure if I should have been doing that or not, I didnt want to cause more damage. So this will be very helpful and answers allot of my questions! I hope your blessed by knowing that You have blessed me with this info today!

[Irene55 in reply to mirandamae1971]

Thank you for that. These exercises help me and I hope they help you too.

[Yorky in reply to Irene55]

Many thanks for the link to the facial exercises. I shall definitely be doing them. What with the finger stretching exercises, arthritic hip exercises and Tai Chi to calm my mind, I will have little time for much else, but I am determined to do as much as possible to help myself.

[mirandamae1971]

As long as we're talking about mouths.... does anyone have the "rash" around their mouth or nose? I have struggled with this rash on and off for years. It starts with little spots of inflamation then turns into an infection.... They have tried many different medications, ointments and steriods... nothing seems to really make it go away and stay away. I am now using a steriod ointment.... it keeps it at bay sometimes... but not others ....grrr...

[joba in reply to mirandamae1971]

I have rosacea, which my doctor says is a present from the scleroderma and I do get outbreaks from that. Have you considered the rash might be a sign of lupus? My dr. says I probably have lupus too, since autoimmune diseases often overlap.

[mirandamae1971 in reply to joba]

the rash isnt they typical lupis looking rash which tends to be across the cheeks and nose so idk. They were thinking about 6-10 yrs ago that it might be lupis, they were very discouraged when scleroderma came up.

[mirandamae1971 in reply to mirandamae1971]

Only because its an even more frusterating disease.... not that lupis isn't a terribly frustrating things too....

[NoWaySclero in reply to mirandamae1971]

i had white spots on the sides of my mouth and nose before i got treated with prednisone.

[mirandamae1971 in reply to NoWaySclero]

yeah thats sorta how mine starts.... then turns into larger red spots that look inflamed...well thats what it is...inflamation. My stupid dermotologist had to do a biopsy to figure that out....???? Now I also have a hole in the skin on my chin...grrrr...

[NoWaySclero in reply to mirandamae1971]

atleast he didnt tell u that u had the Michael Jackson disease...lol

[mirandamae1971 in reply to NoWaySclero]

LMAO....NoWaySclero... How are you doing and how long have you had Scleroderma? I wonder because when I went to see Dr Varga in Chicago, He told me that I was lucky that I was white because the disease seems to attack black people harder and faster.... I am curious if thats true? Hope that doesnt offend anyone....

[NoWaySclero in reply to mirandamae1971]

My whole life if u asked me but doctors didnt catch on to sclero till Aug 2010. Now that I know what sclero is, I can remember may times it showed up in my life from birth. It hit hard in 2003 and went away in a few months. Came back in 2007 and dont want to leave. The white spots were on the sides of my mouth and nose and some personal places. then i got white heads but i think that was from plaquenil. when they went away, they left white dots on my face. I was polkadot girl...lol

[mirandamae1971 in reply to NoWaySclero]

Those white spots that turned into "whiteheads" is how my inflamation begins.... Sometimes turning into an infection because i tend to rub it in my sleep. I wont take prednsone but am using a steroid ointment to keep it sort of at bay... being on my face, makes me very self concious. I can be vane at times because i feel like my looks are all I got, and the sclero helps, and takes it away... I dont have any wrinkles at the age (almost) 41 But around my mouth is a different story... Oh and I dont dare put my face in the sun for long because i will get the darkest tan and have those white spots on my forehead and around my mouth where i have no more pigment. I went to Mexico on a mission trip a couple years ago and within 2 days down there, I was as dark as the locals with the white, talk about embarassing...LOL.

[Irene55]

I have noticed lately that I get blackheads around my mouth. Is that what you mean? I never used to get them, that is something recent.

[mirandamae1971 in reply to Irene55]

Well no the rash isnt like a blackhead or pimple... its like spots of red inflamed areas the size if pimples to start, then gets bigger in diameter and seems to spread, but its a burning itching feeling too. Then it tends to get infected after a while because i tend to rub it in my sleep.

[cyndee]

I have lost my upper lip and my teeth are getting bad and I am having so many pulled.

[joba in reply to cyndee]

I, too, have lost 4 teeth now, in the last 2 years (had to be pulled). My teeth are so prominent now due to the thinning of my lips and my mouth getting smaller--ugh!

[NoWaySclero in reply to cyndee]

Did your teeth fall out? b/c mines are falling out... the first time the dentist said it was my filling and redid it. but yesterday another pieces fell out and there is no filling on it

[living-the-dream-ssc-ray]

Hi everyone since I started using PawPaw creme on my face - the lines around my mouth which normally look as though someone has been at my face with a knife, are not as prominent and tight ! wehoo

[joba in reply to living-the-dream-ssc-ray]

where do you buy this creme?

[living-the-dream-ssc-ray in reply to joba]

Hi Joba

its made in australia !

Go to makeuwell.com.au and then scroll down on to the picture of the paw paw product !

There is also a facebook page - McArthur Natural Products

I can not tell you how excited I am about being introduced to this creme - it has even calmed down the lovely telangestacia red spots on my cheeks - they have become fewer and less red !

So far the creme has healed some of my ulcers, made the skin on my face easier to move including the deep lines around my mouth are not as prominent, and I have noticed fewer Raynauds attacks in my hands and feet as well as making my finger joints feel less stiff ! I have had 14 years of trying all sorts ( and I mean all sorts - including homeopathic snake venom and bees wax !) and nothing has given me these results ! So please Get Involved and share your healing results

[joba in reply to living-the-dream-ssc-ray]

Thank you! I will look into this.

[eletra]

I have Scleroderma, have had it 7 years, and my mouth as become smaller, it is more difficult to chew food and to swirl my tongue around my mouth to move the food, but I would suggest stretching your face every day poking your tongue out and pulling faces to stretch your mouth is the best thing to do, and of course talk to your Rheumatologist about it also, he may suggest something. Understand how difficult it is for you...hang in there....Michele

[Suzyannayoung]

Hi Irene55 , I have Scerledema ,raynauds and polymytosis the last 5 years and gathered up a few other thing along the way. I was so poorly at one point and lost my mobility , my condition is managed with the drugs and like everyone I have good and bad times, you just sorta learn to except it as nothing els you can do. I have noticed over the last 2 years that my jaw is tightening and now can't even eat a cherry tomato without cutting in half lol and my lips are shrinking so my mouth now looks puckered. You would think with all the other things going on it would be the least of my problems but proberly like you it's very upsetting . I like you ,do exercises, also always have a dry mouth. I've spoken to you specialist about Botox as read something about it, but he insists it will look worse. I'm very sell conscious about this as I feel I don't look like me anymore. If you find out any new treatments that may help could you let me know. I've been told it's never got so bad that someone couldn't eat, not that it helps. Keep smiling and try to be positive x

[Lurrax]

I'm not clearly sure if this problem is based on scleroderma but i have this kind of problem that my classmates we're keep bullying me cause of my mouth looks too small enough like they keep telling me about my pursed lips (which i didn't meant to pursed it though), this describes me cause i'm only 12, learning english is limit for a 12 year old.