Systemic Scleroderma has made my mouth smaller and nose pinched
my lips and inside my mouth are numb.How do others eat and drink and
how small will my mouth get. I have only had this for 2yrs. I need to find someone who has this problem, as I want to know what is happening to me.
I do not have any trouble with my mouth do to the Scleroderma, I hope someone here can help you with your question.
Hi Chriswell. try not to worry too much about this. I have had Scleroderma for 11 years and my mouth has got smaller but I can still manage to eat and drink normally. I find that, due to the reflux that I have, I tend to eat softer foods like fish etc rather than a lot of red meat but that if more about getting indigestion than the size of my mouth. I have problems eating hamburgers as I can't get my mouth wide enough so I cut them up rather than trying to eat them whole as you normally would. I also sometimes have problems with thick sandwiches for the same reason but usually you can press them down.
The main problem for a smaller mouth is the dentist but I have managed to find a good dentist who tries to hurt as little as possible.
My nose has got pinched as well but it is not got worse, if that makes sense.
Hope that that helps
Njos
Hello NJOS.Thank you for your reply you sound so positive,I also have a good dentist my main problem when eating is all the inside of my mouth is numb,I find it hard to bite anything as I don't know when I have bitten through anything, my thought is also numb so don't now if any liquid has gone in my mouth so sometimes comes out again.
Was the inside of your mouth like this to start with?.
This illness seems to change all the time so I'm hoping it will improve
Take Care
Chriswell
hi Chriswell, I have to admit I didn't have the numb mouth but used to find that I would bit a chunk out of my cheek sometimes. The only thing that I can recommend is that you eat softer foods so that you will hopefully have less chance of biting your mouth. Also talk to the dentist re this therabite but get it prescibed so you don't have to pay for it. this should stop your mouth getting any smaller. I haven't had to use this and my mouths doesn't seem to have got any smaller in the last few years. good luck and reallt try to keep your chin up as a positive attitude will help you to get through this. NJOS
I too have had scleroderma for about 12 years and my mouth has become progressively smaller over the years but I still manage to eat and drink relatively normally although I find I can't suck large sweets like I used to!! Seriously though, for me I don't like the fact that my lips have become practically non-existent and I feel that I always look miserable (although, in fact, most of the time I'm not). I now have to attend a specialist dentist because I can't open my mouth that wide. I have also been given a device called a Therabite which I use each day which helps to prevent my mouth becoming any smaller. Hope this has been of some help to you
Hello nannysue1950,Thank you for your reply,my eating problem is that the inside of my mouth and tongue are numb,so I don't know if I have bitten through my food or not I might try the Pilocarpine tabs,I did get a prescription for a mouth wash but it made my teeth go black so dentist said to stop it.I looked into the Therabite you mentioned, it seamed quiet dear.You sound very positive.
Take Care
Chriswell
Re Therabite: I did not have to buy it - my dentist referred me to a specialist and it was prescribed for me.
Re positive: that's the only way to be!!
Hello, I have had scleroderma for 20 years. Yes my mouth has got smaller, but not greatly, my lips are very narrow, but I still manage to eat a wide range of foods. Like NJOS I ofen eat softer foods, crisps and French crusty bread are definitely a no no. Soup and yoghurt a favorite lunch. I eat very slowly and drink a lot of water with my meals. You need to find a gentle dentist who understands the problem. I was referred by my dentist to a dental hospital where they did lots of tests. Anaemia can cause a sore mouth, I also had thrush (not visible in the mouth), I now have a bottle of Nystatin oral suspension once a month to get rid of it, this greatly help with the soreness. I also take Pilocarpine tabs to help the dryness, if you can tolerate the extra sweating for a couple of weeks this will reduce and I find that the tabs help a lot with the dryness. I also have a range of gels, mouth sprays, saliva stimulating tabs (not very effective) all prescribed by the Dental Hospital. Don't worry. Get help from someone who understands the condtion. Best of luck.
Hello Yorky,Thanks for your reply,My main problem is that the inside of my mouth and tongue are numb so I don know if I have bitten through my food or not, when I drink I cant feel the liquid and it sometimes comes out..
I might try the Pilocarpine tablets might be more effective than the saliva ones I have,I guess its trial and error with everything.
What a complicated illness took them one and a half years to detect was only when my mouth and nose changed.
Its always nice to get a diagnoses,most of the Dr's I have seen don't know anything about the illness
Take Care
Chriswell
when my scleroderma started about 11 years ago i lost the feeling in my front teeth and my nose narrowed and my skin really hurt. i had no feeling in my finger tips as well. my dr. put me on methotrexate and prednisone and after a couple of months i got the feeling back in my teeth and finger tips. i don't use the methotrexate anymore but the prednisone i take daily really helps with joint pain.
Before I was diagnosed with Scleroderma my mouth was shrinking and I was finding it difficult to eat. It was also painful at the dentist. When I went for my appointment to the Royal Free Hospital to see Professor Denton I received a booklet with instructions for facial exercises. I do these every day and my mouth seems to be normal now. They are stretching exercises. If I don't do them for a few days I feel my mouth tightening. Maybe you could contact the Scleroderma department in the Royal Free. I am sure they will send you a copy. I hope you get some help. I know what it is like. I would be eating a banana from the side, for example. I felt like a beaver.
Burning mouth syndrome getting me down. 
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