It was in the early morning hours when the first light fell through Mrs. Richards’ window. She always wakes up when the sun rises. Usually she rolls from one side to another but not this morning. As she opened her eyes, and as the drowsiness cleared, she felt this burning pain in her mouth again. It has been coming and going for a couple of weeks but this morning it was worse than ever before. She got out of bed and went to the bathroom, where she fetched some water to wash out her mouth. But that did not help. She thought that brushing her teeth might help, but it did not. Mrs. Richards decided to try to ignore this burning sensation in her mouth and go about her day as she always did. But when she the pain got worse by lunch she decided to go and see her doctor.
When Mrs. Richards came back home, her mouth still felt like it was on fire. She went to her fridge and sucked on an ice cube, which helped a little bit, but not for long. Mrs. Richards began to feel anxious and scared. “What if this was here to stay? What if it does not go away? I want it to go away!” The burning sensation did not go away. It stayed. It stayed the next day and the day after. And even after that day. The only relief Mrs. Richards could get was sleep. While it took her longer than usual to fall asleep, she did not feel the burning sensation the next day. Sometimes she caught herself dreaming, right before awakening, and she dreamt that the burn has just disappeared. But then, she opens her eyes and takes the first conscious breath in the morning and it feels like the burn has never been gone.
Then the day of her appointment was finally here. She felt nervously excited. “I will get my diagnosis and then get treated and be good!” she though to herself. The drill was still the same, sign in, wait, go to the examination room, wait and shake hands. The doctor checked Mrs. Richards file, specifically the results from the blood tests. But apart from slightly elevated cholesterol levels, there was nothing to be worried about. “Mrs. Richards, you seem in perfectly good health.” The doctor said. And the anxiety hit her with all her might. “I know I am not healthy! I feel this pain and it will not go away!” she almost started crying. The doctor looked worried and then said “You condition might be something we refer to as Burning Mouth Syndrome. Have you been through menopause yet?” “Yes I have, a few years ago. But what does that have to do with this burn in my mouth?” “Burning Mouth Syndrome usually affects post-menstrual women. It is very seldom, 1% of the population may develop such symptoms. It fits your symptoms and my findings quite well. I will refer you to a psychiatrist, they should be able to confirm the diagnosis and help you more than I can here. I am sorry, but this is all I can do for you at this point”. The doctor got up, shook her hand while wishing her well and left the room. At the reception desk Mrs. Richards received an address and contact information for a psychiatrist. As soon as she came home she made and appointment. She was very lucky, and got one the week after.
A week of pain and helplessness. But Mrs. Richards did not wallow in her pain. She went on to the internet and searched for Burning Mouth Syndrome. The doctor was right, it is a rare disease in general. But then she found numbers for post-menstrual women, which were close to 20%. She also read that there is no cure, but that many people feel spontaneous, moderate improvements, and very few have complete remission. Even though she knew that getting healed completely was very unlikely, she felt some relief. Now she knew what she was up against.
The pain stayed, but she felt confident that she could get some help from the psychiatrist. She was received at a reception desk and then led to a waiting room. Different location, same procedure. The psychiatrist sat down with her and talked about her symptoms, her habits and if she had any emotional problems.
“Well Mrs. Richards, it seems that you doctor was right, you have Burning Mouth Syndrome. There sadly is not much we can do for you at this point, apart from trying to treat the symptoms. We have some options here. First, and this is my preferred choice, you start a cognitive behavioral therapy. There are studies that suggest that if you meet with a psychologist once or twice a week, your pain may be less intense. It would also be helpful to deal with the anxiety you described. Then there is the option to try drugs. The problem with those are, that there is a risk of developing a dependence. More importantly, there is no evidence that clearly shows that we will achieve major improvements with medication. Considering the side effects, I would recommend the therapy. But even here we do not have any clear evidence. This is a problem with Burning Mouth Syndrome in general. There is no treatment that is proven to be effective. Our knowledge of this disease is insufficient.”
Mrs. Richards was hoping for better news, but after her initial research she expected something like this. She took a minute to think about what she was told. After weighing her options, she picked the cognitive behavioral therapy. The psychiatrist suggested a few psychologists she could meet with. The psychiatrist also added that if her anxiety got worse, or if she developed any depressed feelings she should come back and may get antidepressants, something that is commonly done with people who suffer from Burning Mouth Syndrome.
Mrs. Richards went out and talked to some psychologists. She found one she was satisfied with and attended her sessions without missing one. After a few weeks she was able to control her anxiety attacks and she even felt a slight improvement of the burning pain in her mouth, though it was still very evident. She feels better, but she knows that the challenge is not yet overcome. Everyday when the sun rises and she wakes to the first light rays, she shakes off the drowsiness of waking up. And for just a short second she hopes that she does not feel any pain. But it is still there. She has learned how to handle it.
This is a fictional story based on scientific articles. With this story I was trying to write something that goes beyond mentioning facts. I wanted to describe something scientific in a more everyday situation.
Burning mouth syndrome is still not well understand and there is no known treatment. Some studies suggest changes in the density of neurons in the oral cavity but the causes are still not known. While this disease is not necessarely dangerous, it does significantly decrease the life quality of patients. Imagine constantly feeling the fire of eating a jalapeno pepper in your mouth, all day, every day. Many people with BMS suffer from depression and anxiety. There is no ways I could accurately capture the anxiety patients feel. We need more research to understand and possibly treat this disease.
- Burning mouth syndrome - Link
- Peripheral nervous system involvement in primary burning mouth syndrome—results of a pilot study - Link
- Burning mouth syndrome - Link
- The Prevalence of Burning Mouth Syndrome: A Population-Based Study - Link
- Burning mouth syndrome - Link
- Burning mouth syndrome: Current status - Link
- Role of psychological factors in burning mouth syndrome: A systematic review and meta-analysis - Link