“What does it feel like?”
The most common question I get asked is what I experience on a day-to-day basis. It’s a fair question, but it is hard for me to answer because it is my “normal”.
I am in pain. I have chronic joint pain in my temporomandibular joints (“TMJs”). It is true joint pain and not muscle pain in my muscles of mastication (my “chewing muscles”). How do I know? I’ve had diagnostic nerve blocks for one and for two, being a dentist, I do have a sense of the masticatory system. The joint pain can be just a nagging “I know you’re there” kind of pain or it can be “I CAN’T F&@#$*ING FUNCTION–take your breath away” pain at times. I take waaaay too many NSAIDs (ibuprofen, naproxen, etc) and as a result have to take waaayyy too many heartburn meds. I also bruise very easily and have been told I “bleed like a stuck pig” (maybe that’s a Midwestern phrase??)
But I can function. I have been living with varying levels of jaw/joint/muscle pain for 20 years. I can manage. I avoid certain foods and habits. Most people don’t really know that I am in pain.
Over the last couple years, my worst symptom–I can’t breathe normally. As my jaw joints degrade, my mandible falls further back and up and my airway closes more and more. This has made breathing more and more difficult. Especially if there is more inflammation due to heat, allergies, or illness. At night I have sleep apnea. One terrible experience was last year hiking in Arizona with friends who all happen to be fit and wonderful people. It was hot (it was September in AZ!) and I am not currently in tip-top physical shape. The heat and the exertion caused my airway to close even more and I could. not. breathe. It was awful. And so, so embarrassing. This was before I knew what was really going on with my airway, so I just felt like an out-of-shape loser, when really it was because my airway is the size of a drinking straw.
Literally. My airway is the diameter of a drinking straw. You try hiking up a mountain in 95+ degree heat breathing through a drinking straw.