Another year is coming to an end with Burning Mouth Syndrome (Disorder) and I want to share a bit of the research that has been done for us.
As usual, there isn’t a lot and many of the studies are small, but I read everything I can get my hands on and the Burning Mouth Support website publishes links or PDFs!
BMS sufferers have no foundation or national presence so between Facebook Groups (You can find links to them on the BMS Support website!), the Stuff That Works – Burning Mouth Syndrome site, and general Google searches, we make do.
Watch out for those Google searches, though. Often someone is trying to sell you something and often, it works for no one.
Take a look at the research on the BMS Support website. We find the most applicable and well-cited abstracts and reports, and although the scientific language can get a little wordy or even a lot confusing, you can zero in on the conclusion.
You may find a coping strategy or a medicine that may help you deal with this chronic pain. Knowledge is a good thing and the difference between the anecdotal comments on Stuff That Works and Facebook Groups and the conclusions of scientific studies can be dramatic.
Do we need more research?
Darn right, we do!
When will we get it?
When scientists get around to it. There is a hope that as more Americans age and experience this particular chronic pain the numbers will force or validate the need for more research, but it is only a hope.
Meanwhile, we support each other and look for coping strategies and medicines that are helpful.
Happy Holidays to you all, and here’s to making 2024 a better year for all of us.
A Burning Journey 
Merry Christmas, Kali, your blog is like a beam of light that lights up and warms us BMS patients.
Update: With the help of clonazepam, I felt that I could live with BMS, so I decided not to seek psychiatric help and hope that we all have a better new year. Keep in touch !
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Justin,
I am so happy you are finding relief and I hope that things continue to go well for you. Thank you for your kind words about the blog. As a volunteer, that is so special to me.
I think all of us who suffer with BMS have the thought from time to time…”Why me?” or “Is there some reason or positive side to this at all?” I know I did, and the answer that came to me eventually was that if I had this lemon to deal with, there had to be some kind of lemonade that could be made of it. Hence, the blog, and the BMS Support website to help until a cure is found or the numbers grow to the point where we have a nonprofit or foundation for research.
Have a wonderful 2024, Justin and let me know if you learn anything new! It’s always appreciated!
Kalí
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Kali, haven’t been in touch for a while, I hope you and your family are well. During the New Year’s holiday, I drove my wife and daughter to the countryside to climb the mountains, and also soaked in the hot springs in the mountains and set off fireworks at night, and my daughter was very excited ，it is illegal to set off fireworks in big cities, so my daughter has not played fireworks for a long time. I remember you saying that distraction is a good cure for BMS. So I try to enjoy it.
Returning to BMS, taking clonazepam eliminated the burning sensation in my mouth, but the daily stinging still appears, which I can understand because it is a treatment and not a cure. As a unique feature of BMS, most patients include me, feel no pain when eating and drinking, so I know that many patients chew gum, and for me, I find it more effective to suck on a sour candy made of plum and tangerine peel, so I can make more saliva, it relieves the pain.
What can you share about on a BMS-relieving diet? If you don’t mind, please let me know .
Wishing you a safe, healthy and happy 2024!
Justin
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Hey, Justin!
I have been taking care of grandsons this week so it took me just a little longer to get back with you. I am so glad you are throwing yourself into adventures with the most important people in your life. The best distractions, ever!
Clonazepam ODT does control the burn, but you are right, it isn’t a complete knockout and definitely not a cure. Eating and drinking do pause the pain for us, but can lead us to a lot of empty calories unless we are careful. Chewing gum can help, but if it is sugared, you are bathing your drier than normal mouth with a sugar solution and that can lead to some dental challenges. I switched to Xylitol sweetened gum and perhaps it is something you would like to try. Xylitol makes your mouth very unfriendly to the bacteria that causes plaque, tartar, and gum recession but you do have to start small and work up to a complete change because Xylitol can cause loose stools until your body adjusts.
As for a BMS diet, there really isn’t one. Avoiding ultra processed foods and sugars is always a good thing, so definitely do that! In addition, here are some foods and other diet related things that can be triggers for many people with BMS.
1. Intensely spicy foods. Go easy on the spice until you determine how much your sensitive mouth can handle. Many BMS sufferers are “super tasters” and react differently.
2. Sharp edged snacks. Yes, I mean chips of all kinds, some nuts, and even pretzels can inflict little cuts in the mouth that aren’t very noticeable while you are eating but can give you a flare after the fact.
3. Low hydration levels. Our mouths hate being dry so consider yourself as putting out the fire with frequent drinks, whether cold or hot, and water is my go-to in general!
4. Got a suspicion something might be problematic for you? Keep a pain log and you will begin to see a pattern of certain foods or activities that cause your pain to be more intense. Then you can not only moderate your intake or behaviors, you will also have data to share with your medical professional.
Sorry not to be of more help on the diet side, Justin, but I know for me, sugar, ultra processed foods, and too much salt are good ones to avoid. Wishing you the best, my friend!
Kalí
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