It has been awhile since I have checked in with you about my own personal health journey, but something occurred this year that I thought would be a vital PSA since I had such a hard time locating information on the topic and finding the correct diagnosis. In fact, I can’t tell you how many people have written to me that have finally found answers to their health issues (or their children’s) when I wrote about my connective tissue disease. It was through this that I realized that transparency about our reality really does help people.
For example, when I discovered a life-changing way to manage my pain without drugs, I was able to connect other people to this incredible device that got me off painkillers.
Today’s post has been a few months coming and it’s a long one…
Say Goodbye to Your Normal Jaw
My biggest struggle with Ehlers-Danlos Syndrome is my body’s ability to dislocate/subluxations with no real rhyme or reason. It creates a lot of anxiety when you wake up and don’t know if all your bones are going to stay in place throughout the course of a day. My biggest issues have been my shoulder blades slipping, ribs subluxations, fingers (which I brace now with these), and hips.
This Fall though, I had my first dislocation of my jaw and it was as awful as you might imagine it.
I opened my mouth and the pain shot through my jaw all the way to the top of my head with a loud pop. I woke up the next morning in excruciating pain and my teeth were so out of alignment that I had chewed my tongue through the night. I hit the emergency dental office the next evening, after attempting to tough it out for the day, and they put me on muscle relaxers and fitted me for a night guard that would hopefully help relax my jaw to move back in place.
To shorten the drama-filled post-I had an allergic reaction to the night guard, got fitted for another night guard, the allergic reaction progressed, and my tongue swelled and now REALLY didn’t feel like it belonged in this jacked up jaw of mine.
My tongue had scalloped and looked like this and hurt along the sides and tip.
Almost even worse than that though was that my mouth started to feel like it was ON FIRE and it was a 24/7 kind of pain that it was all I could think about.
Imagine burning your tongue, but imagine your whole mouth feels like that all the time. It was utter misery.
I spent the next three months seeking the help from every medical professional I could find.
I tried to mediate and use yoga to quiet my mind from thinking about the burning in my mouth.
I saw a chiropractor.
I saw a massage therapist.
I consulted with three dentists.
I visited my GP and got seven different prescriptions.
My physical therapist tried to calm the nerve pain.
I spent hours and hours trying and hundreds of dollars in agony.
I did not sleep through the night for months.
This lead, admittedly, to some bad habits. I drank A LOT of wine to try to relax in the evening- to stop my mind from thinking about the burning.
I consumed a pot of coffee during the day so I could drive my children to and fro, driving them in a foggy haze that bordered on unsafe every day from the lack of sleep.
I called the doctor for anxiety medicine because all my mind could think about was my tongue.
I ate like crap since I felt like crap anyway.
I would sleep for an hour and walk around the house crying from the jaw pain and the furnace in my mouth.
MONTHS of this! My quality of life went to absolute (for lack of better word) shit.
Burning Mouth Syndrome or Your Own Personal Hell
After doing a lot of research and talking with my medical professionals, we concluded that I had Burning Mouth Syndrome, brought on by the dental disturbance in my life.
Burning mouth syndrome is the medical term for ongoing (chronic) or recurrent burning in the mouth without an obvious cause. This discomfort may affect the tongue, gums, lips, inside of your cheeks, roof of your mouth or widespread areas of your whole mouth. The burning sensation can be severe, as if you scalded your mouth.
Burning mouth syndrome can appear suddenly or develop gradually over time. Unfortunately, the cause often can’t be determined (like in my case). Whatever pattern of mouth discomfort you have, burning mouth syndrome may last for months to years. In rare cases, symptoms may suddenly go away on their own or become less frequent.
Basically, it can just start up for no reason and never end. It can also start up as a secondary syndrome, where it is triggered by other circumstances (like in my case).
According to the Mayo Clinic
, underlying problems that may be linked to secondary burning mouth syndrome include:
- Dry mouth (xerostomia), which can be caused by various medications, health problems, problems with salivary gland function or the side effects of cancer treatment
- Other oral conditions, such as a fungal infection of the mouth (oral thrush), an inflammatory condition called oral lichen planus or a condition called geographic tongue that gives the tongue a map-like appearance
- Nutritional deficiencies, such as a lack of iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12)
- Dentures, especially if they don’t fit well, which can place stress on some muscles and tissues of your mouth, or if they contain materials that irritate mouth tissues
- Allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or dental-work substances
- Reflux of stomach acid (gastroesophageal reflux disease or GERD) that enters your mouth from your stomach
- Certain medications, particularly high blood pressure medications
- Oral habits, such as tongue thrusting, biting the tip of the tongue and teeth grinding (bruxism)
- Endocrine disorders, such as diabetes or underactive thyroid (hypothyroidism)
- Excessive mouth irritation, which may result from overbrushing your tongue, using abrasive toothpastes, overusing mouthwashes or having too many acidic drinks
- Psychological factors, such as anxiety, depression or stress
Burning mouth syndrome usually begins spontaneously, with no known triggering factor. However, certain factors may increase your risk of developing burning mouth syndrome, including:
- Recent illness (BINGO!)
- Previous dental procedures (BINGO!)
- Wearing dentures
- Allergic reactions to food
- Traumatic life events (BINGO!)
- Stress (BINGO!)
- Anxiety (BINGO!)
- Depression (BINGO!)
The side effects are depression, anxiety, and no sleep. I am not kidding when I say that when I visited forums on this topic that people were often contemplating ending their lives after decades of living like this.
Hello, TMJ Specialist
I ended up seeing a TMJ specialist, a costly but necessary investment, and we talked about what my goals were for my visit. For my case, I needed a night guard that was not made from acrylic material and I needed a resolution to my Burning Mouth Syndrome.
I was put through a battery of tests and the biggest takeaways I learned about myself is that I have a narrow airway and my body had been in fight-or-flight mode all night because I don’t get enough oxygen. I was pushing my tongue in weird places at night to try to make oxygen for myself and gritting my teeth because I couldn’t breathe.
It was advised that I pursue this type of nasal surgery (a relatively new option) and that I start Cold Laser Therapy weekly to help calm down my mouth.
With a new night guard and the mild relief from the cold laser therapy, a little lavender essential oil on my tongue, and a proper night guard, I felt like I was back in business.
The burning was still there, but manageable
Feel the Burn
Back to crappy eating, excessive Christmas Cheer consumption, and a load of coffee to make the Christmas magic for my kids and I found the burning started to increase again. Once again,I am pacing the floors and crying at night because of the pain. I have, seriously, been the most miserable person to be around.
It is one of these late night sessions that lead me to a forum where a woman shared that she had been misdiagnosed with Burning Mouth Syndrome. She, in fact, had Acid Reflux and this had been the culprit.
I’ve never had heartburn so that couldn’t be right….
That is when I stumbled upon something called SILENT Reflux.
Silent Reflux, Say What?
Silent Reflux or the term Laryngopharyngeal Reflux (LPR) refers to the backflow of food or stomach acid all of the way back up into the larynx (the voice box) or the pharynx (the throat). LPR can occur during the day or night, even if a person who has LPR hasn’t eaten a thing.
Not everyone with reflux has a lot of heartburn or indigestion. In fact, many people with LPR never have heartburn. This is why LPR is called SILENT REFLUX, and the terms “Silent reflux” and “LPR” are often used interchangeably. Because LPR is silent, it is sometimes difficult to diagnose.
Check out the symptoms list- I share this because most people don’t know they have this condition and it can potentially be dangerous and lead to cancer. Any untreated reflux increases the risk of developing esophageal cancer; in fact, reflux-induced esophageal cancer is the fastest growing cancer in the United States.
Remember how I shared about my excessive coffee and wine consumption? It isn’t just so you can judge me (although you totally can!), I basically was adding fuel to the fire all day long.
That night I popped a Pepcid and my mouth calmed down about 80% and I realized that I was on to something. I talked with the TMJ specialist and he congratulated me on solving the riddle in my body and that we would no longer need the cold laser therapy sessions.
Well, now that we have solved the riddle, I have to make some major dietary and routine changes. I need to book an ENT to resolve my oxygen issue and get guidance on my silent reflux. I consider the fact that my mouth was doing this a very serious cry for help. With all my health issues, I’d be a fool not to take that seriously.
I checked out this book and realized that everything I love to eat had been contributing to the burning sensation in my mouth. I’m a late night snacker, I love my all day coffee habit, I love wine, I have been known to sit down and eat two or three tomatoes with a load of vinegar, give me all the red sauce and heavy foods, etc…
Here are some things you should avoid if you suspect you might have silent reflux too.
I’ve got a lot to work out still, but I would do anything, ANYTHING to feel like my old self again. I need to figure out my new normal again.
I feel like I’ve been through hell and back.
But, you guys, I DID THAT and I’m back, still standing.
Also, I need to distribute medals to my friends, family, and medical professionals this year- thanks for still loving me.
Feel free to shoot any questions to me about any of this or tips on dealing with acid reflux!
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