I respect you all + CHANGE
Hi everyone. This is my first time posting on Reddit, but like you TMJD has completely disrupted my life.
Before this began, I (20M) was a college student with solid grades, hobbies, and a decently healthy lifestyle. However, due to malocclusion caused by braces and a narrow palate, I developed severe TMJD. This has triggered debilitating neuropathic pain in my face and scalp, leaving me bedridden most days and uncertain of my future. On top of fighting my own body, I am also the caregiver for my mother, who is currently fighting stage 4 cancer. 🫠
The Medical Merry-Go-Round
Both my primary care doctor and my neurologist claimed my scalp pain couldn’t possibly be explained by TMJD. I don’t entirely blame them. As this community knows all too well, TMJD is a criminally misunderstood disorder with widespread symptoms and completely different root causes. I am now truly appreciating the invisible battle that thousands of you fight every single day. I respect the heck out of you guys. 🙏
Chronic Pain
Suffering while remaining strong is an admirable trait and hopefully a day will come where you will be pain free. Take a moment to be kind to yourself. Take any ounce of relief you can get and always advocate for yourself. If all you can do today is walk, remember there are many people who don’t even have that privilege. For me, perspective matters as much as pain management. Lately, I’ve found joy in researching historical figures who lived with chronic pain. (JFK, for instance, had debilitating back pain). Do whatever you can to make it through the day! (Meditation, deep breathing, etc.)
Change (the important part)
The more time I spend on this page, the more I agree that we desperately need a standardized, high-quality approach to TMJD. Yes, we luckily have the orofacial pain specialty, “TMJ specialists,” and maxillofacial surgeons, but the severity of this disturbing disorder must be taken seriously by the broader medical community. Right now, “TMJ specialists” can simply make an expensive occlusal splint or mouthguard, but it is never guaranteed to work and often leads people to financial ruin. We need real change. We need health insurance to cover this and we need standardized, evidence-based care WHICH REQUIRES FUNDING! The emerging promise of prolotherapy, PRF, PRP and AI machine learning are examples of advancements in this field. It is clear that TMJD requires a multimodal approach and in severe cases, surgical intervention.
If you’ve read this far, I strongly urge you to take any action you can to push for change in how this disorder is treated.
Consider reaching out to your state representative. Keep it brief, specific, share your personal struggles, and ask those around you to write in as well. Do this as many times as necessary. Also consider citing the** NIH TMD **page if needed. Arm yourself with info and knowledge to show medical insurance providers that TMJD is a public health crisis and not a simple dental issue. 1 in 12 people suffer from this disorder to varying degree.
TL;DR: TMJD sucks and we need to do something about it.