Hi
Does anyone have seriously painful teeth with Scleroderma? I have good hygiene but have receding gums and occasional loose teeth and they hurt like hell. I only ever use sensodyne with added fluoride (dentist recommended) but its not helping. Any advice welcome 😀
Thanks
Adding to above, does anyone have a good scleroderma-informed dentist?
Mine is very good and seems informed re scleroderma, and is also very sympathetic as my mouth has shrunk and I find it so difficult to "open wide" ! I'm in Berks - where are you?
Very good point. My dentist had never even heard of Scleroderma.
I have the same thing. Some days I can't even chew my teeth are so painful then next day they can be ok. I have lots of gaps now where I've had teeth removed. I don't think my dentist understands the problem but how do you find one who does?
Its agony at times and my Jaw bones/joint hurts all the time but the pain get worse when i chew food, then my jaw just seizes up and becomes really tight. 😡
Hi -- yes, have had mouth problems too. My gums have receded and I've lost 4 teeth, fortunately towards the back! But have another loose one towaards the front. I understand it's all to do with jaw changing shape due to scleroderma. I use sensodyne too but haven't noticed any significant improvement. Oh joy!
Thanks Rosella I am definitely noticing my jaw changing, its much tighter than it was with a whole lot more teeth issues. Scleroderma really is a joy to live with at times 😟
When you say your teeth hurt is it like toothache and nerve pain combined? Mine are often like that but then it disappears as suddenly as it starts. I suffer with a dry mouth and every so often my salivary glands swell up for no reason and when they do it is really difficult to move my jaw and neck, the pain is so intense. Although the pain does go away it can take days. Does anyone else get that?
Its mostly bone pain, sensitive gums and teeth pain. I don't get nerve pain and I wonder if taking Pregabalin has helped that. My dentist is hopeless and has never heard of Scleroderma so they're no help.
Hi PickledGinger, just read your posting, yes I have receding gums, and have lost 4 teeth at the front of my mouth and 1 at the back, and have a loose tooth at the back, which I am keeping a close eye on!!! My dentist is very sympathetic, and is fairly knowledgeable about scleroderma, including the tightening of my mouth! Oh the joys of this condition it just keeps giving. Smile and wave folks, smile and wave.
Thanks Fairy56 its a truly horrible disease and the changes for me have been so rapid, which is unnerving, however its great to hear from people like you as you don't feel alone in your fight. 👍
Hello. Just noticed your post! Recovering from double extraction at the moment. Been seen at Leeds Dental hospital where X-rays showed loose teeth with long roots, so apparently that's good! I have lost 4 so far in total. I have Microstomia, associated with Scleroderma, and you can find info on this, together with info on teeth, on SCLERO.ORG website. Search under Microstomia. This is when your dentist needs to really know his stuff! Mine uses paediatric equipment with me now. Unfortunately, it can be left up to us to educate some dentists. There are facial exercises too which I think are on the Scleroderma.co.uk website. Hope this info might help. The pain etc is just an additional thing from the condition that keeps on giving. Hope this info might help!
Hi PickledGinger
I have receding gums and I have recently found that by taking a tablespoon of coconut oil and swishing it around in my mouth for at least 20 minutes twice a day improves my oral health. It has also encouraged my gums to adhere to back onto my teeth. It has helped with my dry mouth and has soothed my dry sore tongue. I buy the coconut oil in a solid form that I put straight into my mouth to melt. It has a pleasant taste and also helps reduce the build up of plaque and bacteria that can sit in pockets along the gum line. I always do this before bed and then brush my teeth. I have noticed that my teeth are much cleaner and my lips are softer. After a few minutes of Swishing or PULLING, the oil warms in your mouth and it thickens to a white creamy substance. When it does this you know its working and you need to keep swishing it slowly around your mouth for at least 10-20 minutes. You may gag or dislike the taste, every person is individual. One word of advice if you do decide to try it, is DO NOT spit it into the sink as like all fat it will eventually block your drains. I tend to spit it out into an empty yogurt pot and put into the rubbish bin. The coconut oil can be bought from any super market or health food store. Aldi and B&Ms sell it fairly cheaply for less than 3 pounds. Another lady with Scleroderma uses a Fry lite coconut spray carried in her handbag to moisten her mouth throughout the day; as she has found that it is much better than using an oral gel or water. Its personal taste and it won't do you any harm. Try it and see if it works for you. If you don't like it you can always use the coconut oil for cooking.
Best of luck and I hope it works for you xx
Wow! I suffer exactly the same with my jaw locking at times. I will defo be trying the coconut oil idea as oral gels/pastilles etc have not helped at all!! Good luck everyone.....
Sorry to be the bringer of bad tidings but my scleroderma caused my gums to recede so much and my teeth to become so loose that I now have a complete set of dental implants, because there was not enough gum for a normal set of dentures. All I can say is good luck
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