Hello. I was just recently diagnosed with Sjorgen's, and well... I'm the type of person who researches everything and then gets extremely anxious. I was reading about how Sjorgen's can really mess up your oral health when you have dry mouth (which I do - really badly.), and I've kind of taken it to an extreme. I haven't eaten anything ever since the diagnosis (4 days ago.) out of fear of getting cavities, and I've been brushing my teeth 3 times a day, despite not eating anything. I'm so afraid I'm going to lose my teeth, I'm a wreck. I know that I can't just not eat forever, though, so I was planning on never eating any carbs ever again and just sticking to cheese, meats, and vegetables. I already know that I sound crazy. But I've always had perfect teeth and gums, and they've always been important to me. So - what do I do? Am I worrying too much?
Yes you are worrying to much. You have to eat> Just continue to eat as normal and brush your teeth. See you dentist reguallary. When I was first diagnosed with Sjogrens Syndrome I developed five cavities that had to be filled. Just see your dentist.
Hi Melissa, I've had sjogrens for most of my life but as only diagnosed in 2005. You are right to be careful about your teeth but if they are so far perfect it is possible the dry mouth issue is not too bad for you. I would advise flossing and getting a water pik and using mouth wash. Keep an eye on things and you can stop too much decay. It's the saliva itself that's an issue and you can get a gel and spray to help if you get a dry mouth. Dont worry to much, although that is part of the illness, but do be careful. Get a good dentist.
Quite agree with Charles. You are worrying too much. In fact, not eating anything will make the problem worse, as eating causes salivation.
You can eat most things, but I strongly advise you to stay away from sodas or any other sweetened drinks. And that includes smoothies, even the ones with no added sugar. There's a lot of natural sugar in fruit and it's concentrated in smoothies. If you want fruit, eat the whole thing - but preferably no more than two servings per day. Vegetables and vegetable juice (e.g. V8) are fine. Other than that, just eat a healthy diet without too much junk food and clean your teeth two or three times a day. (But not immediately after eating, as the enamel is more vulnerable at that time.)
The best way to keep your mouth moist is to drink small quantities of water every 15 mins or so. Avoid drinking large quantities at a time, as this will wash away what little saliva you are producing - and saliva contains all kinds of valuable chemicals.
And yes, see your dentist regularly. He can provide useful advice on products.
And finally, don't worry too much. Sjogren's is an auto-immune disease and very prone to getting worse if you worry about yourself. I'm 70, was diagnosed with SS 10 years ago (having suffered from it, undiagnosed, for 10 years before that!) and I've only lost one tooth since then. And even that was almost certainly down to a botched root canal job years earlier.
Thank you, everyone. I suppose I'll just try to calm down and see how things go. And I'm already on top of that, Lily - I've hated sweet things my entire life, and haven't had a taste of soda since I was 9. The only sugars in my regular diet are quite literlaly just the tiny amounts that come from vegetables and other foods. So, around 1-5 grams of sugar or so per meal. So, I suppose that's a huge help.
It's also extremely reassuring to hear that you've only lost one tooth, and especially that it wasn't even due to Sjogren's.
Hi Melissa
Yes it's easy to feel overwhelmed by things at time especially when you are diagnosed with something that you or your body does not yet fully understand. I have a dry mouth also and I sip water especially at night plus I find Biotene especially helpful during the wee hours which help provide that extra moisture content.
I don't have perfect teeth, still have all my own and so far I have not yet lost any :-)
I find that often with these autoimmune diseases they attack the weakest link so for me right now it's my eyes.
Relax and enjoy life melisa because that's what it's for.
I fond he Sjogrens Syndrome Handbook very useful. It was a but scary at first but best to have the facts.
This is all good advice, especially the drinks of water, gels and oral sprays. I get mine on prescription from my GP. But also, carry a pack of sugar free gum to chew for when it's impossible to get to clean your teeth or drink some water. The action of chewing the gum will help produce saliva to keep your mouth fresh.
Use Spry gum or one with xylitol. Stay clear of aspartame.