I am getting older, and although singing has always been a big part of my life, COVID put a hold on performing, and I am just now getting comfortable with the circumstances that surrounded me when it was at its peak.
I attempted to get back to singing a couple of years ago, but groups were not requiring COVID vaccination, and my precious grandson, who has Cystic Fibrosis, was not old enough to be protected. I had to pass.
Now, he is vaccinated regularly along with me, my family, and close friends, and I feel safer in crowds in general. My husband and I have resumed most of our social activities, and I am going to try singing in a group once again.
People have asked, “Doesn’t singing bother your burning mouth?”
Not climate change, because I have beliefs about that, but I understand that we don’t all agree about it. I’m not here to talk politics with you. I am here to talk about science and the many studies that prove that air pollution of all kinds is bad for our lungs, our health, and, of course, for our burning neuralgia.
If you are in a part of the world that is affected by wildfires, Saharan dust, or other environmental factors that trigger air quality warnings, please heed them. Stay inside if you can. If you have an air purifier, please use it regularly. Take this seriously for your health and your comfort if you suffer from Burning Mouth Disorder.
I was just in Northwest Washington State for a 50th High School Reunion and planned to fly over to Eastern Washington to spend a few days with my best friend from Austin who bought a condo there a few years ago. She called me and said, “Don’t come.”
The wildfires in Idaho had recently intensified, and the winds were carrying smoke and particulates into her area. She told me the alerts warned that even if the air looked clear enough, it wasn’t, and they advised everyone to stay inside if at all possible. I listened, and we are rescheduling our visit. If you are traveling this summer, check out the air quality as well as the temperatures. Your chronic pain will thank you!
After nearly eighteen years of this round of Burning Mouth, I usually know what is going on. Mastering the BMS Support Website helps, as well. However, no one should skip checking in regularly with their doctor or neurologist to let them know how they are doing, and, more importantly, to see if there is any new information, medications, or coping strategies they should know about.
Please keep in mind that many images, graphics, etc. on the Internet that show you gnarly-looking tongues with cracks and lesions are NOT Burning Mouth. If you have Burning Mouth, there are no visible symptoms. It is one of the things that makes it a challenge to diagnose!
My checkups have gone to an annual schedule since I have had this for so long, and it was great to get a chance to share the physical therapy coping strategy and ask if there was anything new I should try. Unfortunately, it looks like I have tried most meds available, and the ones that worked the best had that pesky head twitch side effect, so I could not continue them.
Have you tried anything lately that worked for you?
Winter is here, and the furnace is on, the fireplace is lit, and maybe even a fire pit is burning outside at your house. Sounds so cozy, doesn’t it?
But the truth for Burning Mouth sufferers is that furnaces, fireplaces, and fire pits are no friends to us. They dry out the air, and some release particulates that can be irritating to our tissues and lungs. Dryness makes our Burning Mouth pain more intense, and even adding large amounts of water to our daily intake doesn’t make it “all better.’
So, what can we do?
Humidify!
Ensure you are using a clean humidifier with no mold or other residue; distilled water is always a good choice. Humidify your sleeping area, if nowhere else.
The New York Times ran an excellent article on how to make humidifiers work for you. It can be accessed at this gift article link:Click Here
Boiling a pot of water on the stove will put additional moisture in the air, but you must keep a close eye on it to avoid a burned pot.
Interested in learning more about Burning Mouth, the studies that have been done, and the science so far? Go to the Burning Mouth Support website at https://www.bms-support.org/and check out the Research page for links to the latest research we can find.
If you know of a study or research that has been done by a reputable source that is not listed there, just let me know in the comments, and I will forward that information to them.
Stay warm, stay hydrated, and take good care of yourself this winter.
Well, we knew it could happen. The combination of Clonazepam ODT and Cymbalta gave me a good long run, but the tingling has gradually morphed back into my usual burning cycle, and it is time for me to discuss next steps with my Neurologist. Luckily, I have our annual checkup coming up soon.
A higher dosage of Cymbalta?
My magic eight ball says “Doubtful.” I have started getting some minor muscle tremors similar to what I experienced on Effexor XR, and I think a higher dose of Cymbalta would probably make that worse.
Ramp off of Cymbalta?
This sounds like what he may suggest, but I will wait and see.
Is there anything else we can try?
Not that I have heard about, but this is why I go to a Neurologist. He keeps an eye out for me and others who suffer from Burning Mouth, and I am blessed to have such an open-minded and professional advocate.
I will let you all know what I find out at my checkup in early November.
Take care out there, and keep using your coping strategies as holidays approach and stress can increase. Remember, one of the best things you can do for your body and your pain is hydration. Keep that water or other drink handy and stay as comfortable as possible.
(UPDATED 2-6-25) I rarely post twice a month, but things are popping up in the world of pain medicines, and you should probably know about them!
First, The New York Times Daily Podcast ran a cast about #chronicpain and some new developments in dealing with it. It was eye-opening and informative, so I bought a copy to share here. If you find it useful, consider subscribing to the NYT Daily. I learn something new nearly every day!
Click image to read the article in full
In addition, my friend and co-worker Dennis Sharpe (BMS Support Website) shared information about a new medicine coming out from Vertex. It is called Journavx and it sounds like it may be a game changer for moderate to acute pain. Will it work for Burning Mouth? Only time will tell, but if you don’t know about it, you can’t ask, right? Click on the link below to learn more about it.
I will ask my Neurologist what he thinks of it concerning the relief of burning mouth pain and I will share that with you soon.
UPDATENOTE: I spoke with my Neurologist yesterday and this is what he said: “I actually had another patient ask about the new medication, Journavx. The problem is that it is only approved for acute pain treatment. I wish I knew why. Unfortunately, that means it is not an option for you at this point as we are not likely to get it approved, at least not in any reasonable amount of time. Thank you for contacting me about it.”
Maybe at some point they can get it approved for lower levels of pain, particularly chronic pain, but most of us with BMS would not qualify at this point.
Do I sound a little excited? I am. I am eager to see where science and pain relief will take all of us in the coming years. My prayer is “Relief for everyone!”
I have been keeping all of you in the loop as I have been combining a dosage of Clonazepam ODT with a dose of Cymbalta each day. The good news is that it is continuing to work for my primary BMS/BMD (Burning Mouth Syndrome/Burning Mouth Disorder)
I consistently have some tingling in my tongue, particularly in the front third, but it is just that—a tingle. This combination of medicines has greatly lessened the fierce burning I have dealt with over the past seventeen years (yes, May 2025 will be the 17th anniversary!).
Some may say, “Doesn’t that mean you are cured?”
No. It means I have found a combination of medicines and coping strategies that are allowing me to live a nearly normal life. That is a fabulous thing, but it is not a cure.
If you have read some of this blog, you know what a slog it was to get here and that I do not take it for granted. There have been other medications that helped until they didn’t, and I just hope this is not one of those. However, for us, there is no guarantee.
The good news: I don’t need a root canal…yet. The endodontist recommended that we wait until after the first of the year and if it is still sensitive to cold and heat or gets infected, we will address it.
The bad news: No flare of pain to deal with. I haven’t had a big flare while on Cymbalta and Clonazepam ODT, so I can’t tell you how well that treatment works for me when the burning gets turned up to 11.
I must say that this combination has given me a combination of pain-free days (I still sometimes tingle) and sleep-filled nights.
Recently, a reader in China asked an intriguing question. “Is there a diet for Burning Mouth Syndrome/Disorder?”
It was sad to tell him that there was no recommended diet that I knew about. However, there are some things that I have picked up over the years, both anecdotally and through personal experience, that I am better off avoiding.
I will share them here, but I also recommend keeping a pain diary. I have talked about this before, but when looking at potential irritants, intolerances, or allergies, it is of particular benefit!
If you are interested in learning more about pain diaries, there are resources on this blog that can help you. First, you must understand the pain scale and the ways it doesn’t really work for BMS Sufferers. Then, figure out what format works best for you and go to your next doctor visit armed with usable data, whether for diagnosis or continuing treatment.
Some basic tips for Burning Mouth Sufferers when it comes to food irritations:
Avoiding ultra-processed foods and sugars is always good, 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. Chewing gum can help, but if it is sugared, you are bathing your drier than normal mouth with a sugar solution, and can lead to some dental challenges. I switched to Xylitol sweetened gum and perhaps you would like to try it. Xylitol makes your mouth very unfriendly to the bacteria that cause 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. 4. Low hydration levels. Our mouths hate being dry so consider yourself “putting out the fire” with frequent drinks, whether cold or hot, and in general, water is my go-to! 5. Suspicious that 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 but you will also have data to share with your medical professional.
I look forward to hearing your experiences and recommendations and do check into the BMS Support Website for more coping strategies to help you in your Burning Mouth Journey.
A Burning Journey 