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I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.
Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription fluoride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.
I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:
“You have fourteen cavities that we need to fill, and the sooner the better!”
“What did you say?” (The language was much stronger in my head). I was truly flabbergasted!
I talked to two dentist friends that are specialists in Sjögrens (but unfortunately not close enough to be my dentist) to learn that my previous dentist may have been watching these progress. But I have to say that I saw some brown discoloration and pointed these areas out to my dentist about a year-and-half ago, and he said nothing about cavities. So perhaps I did not have the dentist that I thought I had (it was the new dentist that took over his practice who informed me about my cavities). And perhaps my gut instinct about these spots being caused by dry mouth was on target.
Point one: You know your own body! If you don’t feel good about an answer you’re given, consider seeking a second opinion.
Because filling these cavities was going to be a true investment, I decided to talk to several dentists. I found a good dentist that does a good job and his pricing was in line with my expectations. He’s a bit old school, but he’s great. His prices were less because he didn’t have the super current technology. Although I like new technology, his technology was not antiquated and his approach to his patients was preferable.
Now on to the real reason I decided to share this information with you all… I felt (and still feel) a little bit dirty. As if I must not be taking care of myself and as if I have poor hygiene. Since receiving this information, I have had to work on the emotional aspect of not only the new cavities, but the realization that my Sjögrens is progressing and causing real oral damage. In fact, I see quite a few other areas where the same pattern of discoloration is starting. So I guess I better start saving some money for upcoming (and unplanned) oral work due to Sjögrens-Mouth. I will continue with the same solid protocol for my oral care, as I know it is recommended.
Point Two: We should not feel shame for something we cannot control, especially when we are trying so hard to prevent it!
So shame on you, Sjögrens! And shame on our medical system that does not think oral care is a major medical concern!
But there is no shame on me or you. #ThisisSjögrens
Head to sjögrens.org if you need tips on oral care. Look for Dr. Ava Wu’s tips that she presented at the National Patient Conference. I believe the information will be going up on the foundation site soon.
I would love to hear your thoughts/experiences with ‘brain fog’. Some days, typically ones when I haven’t been sleeping well, it is extremely frustrating!
Hi Jeanne. Yes, brain fog can hit me hard when I haven’t slept well or towards the end of the day when I’m tired. I must admit that exercise and keeping my mind active has helped me a lot. I saw an improvement four years ago when I went back into the tech industry — much of my work is strategic and ever-changing and I believe it has helped with my focus and brain fog. But I still do hit a wall at the end of the day as body says , “that’s it…you’re done today.”. I have been thinking about doing a post on brain fog and how people experience different aspects of brain fog. So you have encouraged me to get on that! I may create a little survey to go along with the post…
A few years ago I became much more vigilant about my mouth care. Like you, I have had one or two cavities in the past 20 years. However at a cleaning last year, a cavity was found and then they put a “watch” on 4-5 more. All I could think was, “Oh boy,here we go…” It’s never easy. Thank you for sharing.
Thanks for sharing Christine, and that was my exact response: “Oh boy, here we go…”!
My teeth are breaking…right now I have 5 teeth that have broken and don’t have the money to fix them even with the so called dental insurance!!
Gee willakers, I used to brush religiously and use mouthwash because I was meticulous about my breath and I STILL got a lot of cavities, and my molars began needing to be pulled. Not having enough saliva is a factor that no amount of brushing can substitute for
I filled those cavities too. And had 2 teeth pulled, partial made. $1500. Less than 3 years later ALL teeth had to be pulled, dentures and still need surgery for 2 implants on bottom and 4 on top to stimulate bone-they will attach to dentures aka implant-supported dentures. $12K surgery alone, trying to raise it thru GoFundMe because Medicare doesn’t pay. Raised over $6K to pay for other work. gofund.me/LoriLife
I found a GREAT PRODUCT for my dry mouth! TheraBreath toothpaste and rinse, use twice a day and is guaranteed to kill bad breath for 12 hours. No more morning breath! It works for my dry mouth too, haven’t had to use Biotene at all. Get it at Wal-Mart! It’s very strange but you will pay double if you order online.
I wish everyone a mild year. I’m so tired of the pain. Sorry if I mess up words, you understand! I’m being very careful because I am tired. Should have that tattooed on my forehead! Lupus sucks, Sjögren’s sucks. We need a cure! Take care all.
Lori…so sorry for all your pain and good luck on your gofundme!
I have always taken good care of my teeth but the last few years have been awful. Each time i go to the dentist, i have at least 5-6 cavities. I have had to have bridgework removed and teeth extracted. I had a terrible infection. My oral care is impeccable but nothing can replace saliva! Sjogrens Syndrome has many hidden issues and this is one of them!
I started getting cavities in my front teeth; that’s what alerted my dentist to Sjogrens. He suggested Spry gum, with xylitol. I chew it religiously throughout the day, and even a half a piece remains in my mouth at night. (My nighttime dryness is the worst; and yes, I’m a side sleeper.). Long story short, since doing this I’ve had NO cavities for two years. I hope this gum will help others, as much as it does me.