TMJ disorder: Living with an invisible chronic illness

I first learned about TMJ disorder when I was newly-moved to Los Angeles, facing levels of traffic and commute hours I hadn’t ever imagined living on the east coast! Being a graduate student while navigating one of the biggest cities I’d ever been to of course brought on some nerves and stress, which had led to a habit of clenching my jaw without realizing.

What I thought was the beginning of a deep cavity in my tooth, ended up being nerve and muscular pain from having clenched my jaw while sitting in traffic every morning for the past several weeks. After seeing a dentist, urgent care, and a primary care doctor, all who seemed sure I wasn’t in that much pain, I’d been advised to take Ibuprofen, drink lots of water, eat soft foods, and do some jaw stretches. After the second straight week of pain with no improvement, I was starting to feel miserable. I went back to the dentist and that is when he confirmed a suspicion of TMJ disorder.

OK, so what exactly is TMJ disorder?

The temporomandibular joint connects the skull bone to your jaw, with a disc acting as a hinge. When excessive clenching or grinding occur, it can lead to the disc sliding out of place, or the jaw becoming inflamed and difficult to open or close. Although considered an acute disorder, it can lead to many flare-ups, bringing with it chronic pain.

Because it is often considered to be a temporary condition, surgery is almost never considered for TMJ disorder. My dentist suggested I be fitted for a custom mouth guard as I was likely clenching my jaw in my sleep. However, I soon realized that was not what was happening, and the mouth guard ended up making my mouth hurt even more. I tried cutting out caffeine as I found that would make my jaw muscle constrict. However, every TMJ disorder flare-up would lead to a migraine. With a history of migraines, caffeine was the one thing that normally made my migraines go away. It soon became a cycle of TMJ flare up – Migraine – Caffeine to treat migraine – No Migraine – worse TMJ pain.

My prognosis

After several more visits to different doctors, I decided to try a more holistic approach and sought out a OMM (Osteopathic Manipulative Medicine) specialist. OMM uses a hands-on approach to manipulate the muscles, fascia, and bones of the body to reduce pain and inflammation. Ultimately, I did find myself feeling much better after two sessions (each one was about 90 mins long), but again, it was temporary relief; combined with the high out of pocket costs (most OMM practitioners do not accept health insurance and thus charge upwards of $400 per session, depending on the region), I could not continue this method of treatment long-term.

At this point, I had been living with the chronic pain for nearly six years, with no end in sight. I had been dealing with it one flare-up at a time, with each new flare-up occurring at least 4 to 5 times a month. Mouth guards, soft diet, and even prescription muscle relaxers provided minimal relief. At this point I felt like no health care provider was truly understanding the scope of my pain, and I felt very isolated because no one I knew was familiar with what I was going through.

Turning the invisible into visible

Living with this invisible pain has been frustrating. I don’t always know what to tell friends when I’m unwell, or coworkers when I need to leave work early because of the pain. I know I appear normal, speaking normally, and maybe looking a bit tired at most. I realized I had been forcing myself to often downplay the physical pain as much as possible out of fear that I would come across as dramatic or as if I was making it all up. Over the last year or so, however, I have been more forthcoming about when I have a flare-up, and letting people know exactly what I’m feeling.

What has helped me the most is consistent healthy eating (NOT to be mistaken with restrictive eating, cutting foods out completely and/or ‘dieting’) and moderate physical activity 4-5 days a week. I find that giving myself nutritious sustenance, and getting my heart pumping, is the most helpful course of action so far. My TMJ disorder has certainly not been cured, but after many years of trying different treatments, I’m glad I’ve found something that has provided more consistent relief (and that is not to say this is what would work for anyone else…our bodies are all different). I have yet to meet anyone who has suffered from TMJ disorder in the same way I have, so I do still feel like I’m in this alone, but sharing my experiences and being open minded to the types of treatment has been worthwhile.

When it comes to living with any kind of chronic illness, whether physical, mental, invisible, or not, it’s important to keep a strong social network and avoid isolation. Dealing with chronic illness can be difficult on its own, so make sure you have people in your corner that you can trust and rely on to help you get through it.

If you’ve had any experiences dealing with chronic illness/pain, please feel free to share in the comments below!