unclench your jaw.

what misdiagnoses of TMJ and trigeminal neuralgia taught me about (1) how our bodies communicate to us and (2) how important it is to advocate for yourself at the doctor

Earlier this year, I went to the dentist for what was supposed to be a routine filling. About a week later, I began having severe left facial pain, from my temple down to my chin, and all the muscles in between. The best way I know how to describe it was that it felt like someone was pulling apart the left side of my face, while simultaneously stabbing and electrocuting it.

I like to think of myself as someone who has a fairly high pain tolerance, despite what my husband might say, yet I soon began living off ibuprofen and extra-strength Tylenol, because without it, I couldn’t function or accomplish the everyday tasks I needed to.

When the pain first began, I went back to my dentist, who was quick to diagnose me with TMJ, stating that there was nothing wrong with the filling or tooth. They referred me to physical therapy and told me to get a mouth guard in case I had started grinding my teeth at night. After several sessions of physical therapy, the pain never improved. In between those PT sessions, I went to my doctor several times, who reiterated the TMJ diagnosis and prescribed me several medications to manage the pain. Steroids…nerve blockers…muscle relaxers…something to help me sleep because the pain was waking me up throughout the night. Once I had exhausted all of the medications (outside of literal oxy) and tried all the at-home remedies, the medical professionals began thinking it could be an issue with the nerve(s) rather than my jaw itself (so, not TMJ). It had been about three months of pain and ibuprofen/Tylenol dependence at this point.

I got a brain MRI to rule out Trigeminal Neuralgia, a nerve disorder that is often referred to as the suicide disease because the pain gets so bad it makes you want to die. I was convinced I had that.

My MRI ended up coming back clean, which I was grateful for, but the pain persisted still without any answers.

Shortly after the MRI, the same tooth that had the filling back in January started hurting. Now in addition to the left side of my face hurting, I could barely touch my tooth even with just my tongue. Back to the dentist I went to, where they finally referred me to an endodontist.

A day or two after that dentist visit, the tooth pain disappeared, and along with it, the facial pain. At that point, I knew enough to know that probably meant the pain had been nerve/root related the whole time (the pain went away because the nerve had finally died, which was great because it meant no more face pain, but a dead nerve/root is subject to infection, which is why you need to get a root canal when that occurs).

I got the root canal, and so far, so good (praise God and endodontists)

When my doctors thought I had TMJ, and therefore I thought I had it, I learned a lot about its causes: grinding our teeth, clenching our jaw, stress. I never knew how much I unconsciously clenched my jaw throughout the day until I was told to be aware of it. Since this experience, I’ve found myself frequently noticing when I’m clenching my jaw, and I’ve realized I do it a lot; I think we all do. It often happens when we’re stressed, which makes sense, because when we’re experiencing any intense emotion or feeling, our bodies tighten up; we get tense. Our bodies are wise and they do what they can to protect us. Part of that means tightening up and trying to communicate to us that something is not quite right.

Even though my pain was nerve-related and never stress-related, I did learn that one way my body communicates to me that I’m stressed, is through a clenched jaw. Our bodies hold stress in a variety of ways, and we’re all different, so this is not an exhaustive list by any means. But we can often notice tightness throughout the body which can communicate something greater to us, such as, stress - perhaps you notice a knot in your stomach. Maybe you experience back pain. Your shoulders might feel tense, and you might find yourself needing to drop them rather than tightening them up. You might find that your breathing has become shallow, so you have to be intentional about deep breathing; the kind that makes your stomach rise, not your chest.

If you’ve ever been to therapy, specifically to a therapist who is in tune with the mind-body connection, perhaps you’ve been asked, “Where do you feel that in your body?”

For me, it’s usually my chest, my stomach, or now, I’ve learned, my jaw.

When we notice where our body tends to hold stress and any other heavy emotions, we can then be more mindful about releasing that pressure and oftentimes feel a very dramatic (positive) difference.

Even though I never had TMJ, and my pain subsided with the root canal, I still find myself aware of when I’m clenching my jaw because I essentially became conditioned to do it, thinking it would help my pain; while it didn’t help the pain, it did help me learn how to release the pressure I would create on my body by clenching my jaw. Now, every time I find myself loosening my jaw, I feel a pressure release, as though my body is telling itself, “Okay, we’re safe, we’re all good, we don’t need to be tense.”

I invite you to join me in noticing what your body is trying to communicate to you. Allow this to serve as your reminder, or perhaps the permission you’ve been yearning for: Drop your shoulders. Take a deep belly breath. Unclench your jaw. Stretch. Go move - dance around your house with your partner, go on a walk, jump on a trampoline, hike.

I am not someone who believes you need to take a lesson away from every painful experience you have, but I did want to share one more thing I took away from this: The importance of advocating for yourself at the doctor (and dentist, in my case). I am confident that if it weren’t for my persistence with my doctor and dentist, I could very well still be living with that chronic facial pain. In my 27 years, I’ve learned that it is very common for a doctor to see a young person who appears healthy, and to assume nothing is wrong with them, OR to be quick to jump to, “Oh, it’s just stress/anxiety,” or “Are you sure you’re not pregnant?” I had to push for that MRI. I had to push for my dentist to take more X-rays and run more tests. I had to tell the physical therapist, ‘This is not working.’ I had to go into all those appointments knowing exactly what I wanted each one to achieve, and I had to be firm about it.

I have never been so firm with a doctor before in my life or advocated for myself the way I did, because nothing was making the pain go away and I knew something was wrong (we know our bodies best!) I’ve learned that you have to be firm or you’ll be dismissed. I know not all doctors shrug off their patients when they appear healthy or when they can’t determine what is wrong with them, and yet, it does happen, especially to women. I am very lucky I have an incredible doctor (I will swear by UVA Health forever and ever); one who listens to me and doesn’t dismiss me, but for example: I could have accepted the TMJ diagnosis and accepted that was pain I’d just have to live with. But from the beginning, I knew in my gut it had something to do with that tooth and the filling, even though I had been told several times by my dentist that it didn’t. Even though I’m not a dentist or a doctor, I knew there was a reason for the pain that they had not figured out yet, so I pushed and I advocated. You know your body best. If something doesn’t feel right in your body, there is probably a reason for it.

Unclench your jaw. Advocate for yourself. And don’t forget to unclench your jaw after ;)