Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?
But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.
The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.
When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.
I am not a doctor and try to make that clear at all times. These are my thoughts, observations, and experiences that you may or may not find useful to you. I will always encourage you to consult with your doctor, take good care of yourself, ask for help when you need it, and communicate with your family and friends so that even if they cannot help, they can try to understand.
Commenters have asked why I don’t personally think vaccination for #COVID is related to burning in the mouth. It may be, but it was not for me and this blog is about my journey. My personal calculation of risk was that even if it caused more pain or a flare, it would be worth it to help to prevent death in an ICU with a ventilator tube down my throat. None of the three doses I have received flared my burning, and so that is what I reported.
Your experience may be different and I respect that, but I will continue to share mine and to encourage anyone with a sudden onset of oral burning (whatever they may suspect as a cause) to see their doctor and rule out the other things that can cause it. Some are very easy to cure, and wouldn’t that be wonderful?
New definitions and diagnosis parameters are in the works right now, and perhaps the future holds a more binary diagnosis tool that could cause this burning to be classified as a disease (CORRECTION: “Disorder”) rather than a syndrome. I will keep asking my Neurologist what he is hearing and will keep my ear to the ground for more research and recent studies that may give us easier paths to diagnosis and treatment and will share that information here. I keep hoping that at some point a truly effective treatment with few side effects will be found, but after fourteen years of burning, I am simply coping.
Take care out there and feel free to keep asking questions, but I am not interested in debating vaccines with you, so leave those to your doctor.