“Chronic pain is often defined as any pain lasting more than 12 weeks. Whereas acute pain is a normal sensation that alerts us to possible injury, chronic pain is very different. Chronic pain persists—often for months or even longer.”
Living in constant pain is probably one of the most frustrating things I’ve ever had to deal with. It’s also something that’s very hard to understand for people who haven’t experienced it.
I have what’s called a TMJ disorder, or a temporomandibular joint disorder. It’s a relatively common problem with many different causes and very few effective treatments. To be even more specific, I have temporomandibular articular disc displacement with reduction. Let me try to explain what this means as I understand it.
The temporomandibular joint is a ball-and-socket joint on either side of the jaw, positioned just in front of each ear. It is responsible for allowing the mouth to open and close. The lower part of the jaw has the “ball” part of the ball-and-socket joint, which works sort of as a hinge to allow movement in pretty much all directions of your jaw. Slide the bottom of your mouth side-to-side right now. This is possible because of the way your TMJ functions.
Inside the ball-and-socket is a small, rubbery disc, called the articular disc. This disc allows lubrication within the joint and protects the bones from rubbing together and wearing down. This disc has three parts: the posterior, intermediate, and anterior bands. Each of these bands are different thicknesses and are located at the front, middle, and back of the TMJ.
In a properly working TMJ, the disc slides back and forth within the socket of the joint, along with the movement of the ball. In my particular case, one or more of the three bands that make up the articular disc is stretched and flattened, so it doesn’t glide smoothly within the joint like it’s meant to. (I believe this is due to the doctors opening my mouth too far and for too long when they removed my tonsils – effectively damaging the disc beyond repair. My doctor says otherwise, which I’ll get into later.) Instead, with any movement (opening, closing, chewing, speaking, etc), the disc bunches, or folds, inside the small space between each piece of the joint. As the ball rotates in order for my jaw to open or close (or move at all), the disc runs out of room because it’s bunched up, and quickly snaps back to its normal shape, which pops the ball out of the socket and irritates the bands of the disc, as well as all muscles surrounding the joint. It produces a loud popping sound every time I open or close my mouth. Initially, I described it as a “clicking” sound and it only happened on the right side. Now, though, it is much more severe than clicking (popping or cracking is more accurate) and, while the right side is much worse, it happens on both sides.
Of course, since all the muscles in the jaw are being irritated and inflamed, they become tense which causes pain. This tenseness and pain spreads throughout my face, up into my temples, along the sides and back of my head, and down into my neck. I’ve had headaches because of this every single day for months on end, and the muscles are constantly pulling my vertebrae out of alignment which sends the pain down my spine as well.
The most common “treatment plan” is to mask the pain associated with TMJ disorders with painkillers. Frustrating, right?
In the past two years, I’ve been prescribed numerous painkillers, anti-inflammatories and muscle relaxants (diclophenac, naproxen, Tylenol #1, Tylenol #3, clonazepam, gabapentin, and others); had extensive testing (CT scan and 360 degree x-rays) by multiple doctors and specialists; tried physical therapy, stretches, exercises, acupuncture, chiropractic treatment, essential oils, endless amounts of people’s prayers, ice, heat, and “toughing it out” with little to no improvement or relief. Some days the pain is bearable, but on other days, all I can do is sleep and hope to feel better when I wake up. I’ve noticed the pain is worse when the weather gets rainy or stormy and when I’m feeling stressed or anxious.
My doctor refuses to accept my theory (as well as my acupuncturist/chiropractor and physical therapist’s) that the cause of my problem was an error made by the surgeon during my tonsillectomy in 2015 (which, by the way, put me through an excruciating month-long recovery, including a nasty infection in my throat and 15 pounds of weight lost from my already thin body because I wasn’t able to eat). My physical therapist told me he thinks the surgeon had my mouth propped open too wide (which isn’t very wide considering I have such a small mouth) for too long during the procedure. My doctor has told me several times, “this couldn’t have possibly been caused by the surgery,” which is code for “I will not admit that another doctor has made a mistake.” He is, however, quick to discredit the claims of my acupuncturist/chiropractor and physical therapist because he doesn’t agree with anything other than Western medicine and relying heavily on pharmaceutical companies. He regularly rolls his eyes and scoffs at the mention of the c-word (chiropractor). If their work is so irrelevant and has no medical basis to support it, why is it one of the only things providing me any sort of relief?
Every time I go back to the doctor’s office and tell him that yet another medication hasn’t helped me, he responds with: “well, what do you want me to do?” and shrugs. At this point, he’s clearly desperate to find any possible way to prove the surgeon didn’t cause the problem. It’s been two years since he started shoving expensive prescriptions and referrals my way, likely hoping I’ll give up, or I’ll become someone else’s problem. He most recently referred me to a neurologist and prescribed morphine (which I refuse to take because I don’t want to become dependant or develop an intolerance). Since I live in a small town, decent doctors are limited, although I will be seeing someone new relatively soon. I’m thankful for living in Canada and having access to free healthcare, but I’m consistently disappointed because I feel like I’m slipping through the cracks. I’m beginning to wonder if I will ever feel better.
Medical professionals have not been able to find a definitive cure for TMJ disorders. Hearing those words from a specialist after months of suffering is absolutely heartbreaking, but I still hope there will be advancements in the research of TMJ disorders. New tests need to be developed specifically for this problem, because x-rays and CT scans show nothing irregular about the joint. The problem can only be detected while the joint is moving, so pictures can’t, and don’t, show what is happening inside (which is a huge reason why my doctor seems to think nothing’s wrong – my tests have all shown that nothing is wrong).
The word frustrated doesn’t even begin to describe the way I feel. I want to get back to living a regular life: not needing to cancel plans because I have another headache; or taking more sick days than a 22-year-old normally should need off work; or spending hundreds of dollars a year on medications that aren’t helping; or driving an hour and a half each way for an hour long appointment with the acupuncturist/chiropractor in order to get any relief. I dream of one day eating whatever I want without worrying about it being too hard to chew; or being able to laugh out loud without feeling like I’ve been punched in the face; or going even one day without uttering the phrase “my jaw hurts”.
If you have suffered from a TMJ disorder, or have chronic pain due to some other health issue, please know that I truly understand what you are going through. If you have any tips to help ease the pain, stories about how you’ve felt cheated by the medical system, advice for dealing with anything I’ve mentioned in this post, or even just some encouraging words, please feel free to share them with me in the comments below. If anything I’ve said has resonated with you, please share this post on social media by clicking one of the buttons below.
Thank you so much for taking the time to read this and for all your thoughts and prayers. God bless.