I’ve struggled with TMJ disorders for 15+ years since I was first diagnosed at the age of 13. Due to lack of research and information—my condition went untreated and was misdiagnosed for over 10 years until my life became completely unmanageable. By the time they figured out what was going on, the damage was irreversible and permanent. I was diagnosed with a rare jaw disease called Idiopathic Condylar Reabsorption (ICR) which led to bilateral bone on bone osteoarthritis of my TMJs. This could have been prevented if I had proper treatment and if there was more research available. I want to share my experience and journey to help others by raising awareness, providing resources, information and research, in addition to providing support and connecting others who truly relate. All are welcome to join our community on this Facebook group to connect with others and for more additional support—join the mentorship feature for more personalized, one-on-one support.
Hope, I am so sorry you have had to go through this ordeal for so many years! Many of us, go through the same thing. We just can’t get a proper diagnosis, and treatment early enough. I have had bouts of TMJ, and in fact I took a fall, all on my right side, on July 4th morning early …I tripped over a step that goes into a huge tub/sauna etc I have. I got up to check on my ups, fireworks had woke them up… and even though I have walked past that step 100’s of times, somehow my foot or shoes caught it. I fractured my collar bone, my shoulder blade, I hit my head almost had a concussion, my hip, and I hit my “jawbone” on that side also… I am having issues with it, and I have osteoarthritis and RA, plus Osteoporosis. Thank you for your raising awareness about this. I know many of us do appreciate it. I’ll check out the Facebook page! ur issues sometimes more than not are now considered “rare” disorders simply because they are just NOW after sometimes decades finding out what they are, what causes them and so forth. Best regards, and again Thank you Rhia
I have the same. No one talks about how bad and painful it can be. I’ve had it since I was young. It’s such a debate whether it is medical or dental. The focus should be on the patient and prevention or early stage diagnosis to remedy the condition before permanent damage. I now have some arthritic changes in my jaw. With also having autoimmune dis-ease, Lupus, Fibro, etc. It can be even worse. I searched for help. Basically ypu just get the run around from Dr. to Dentist. Hope this matter is taken more seriously with health providers and insurance companies.
I’m so sorry you’ve also been struggling with these issues. It’s hard for others to relate what we’re going through on a daily basis. And you’re 100% right — they try to argue it’s not medical and dental then we get thrown around doctors dealing with delaying proper treatment or insurances refusing to cover. It’s not fair to the patients and needs to change!
Exactly! So true… Smh I hope you get the help you need. I hope we both do. I get chronic headaches, face aches, earache, and toothaches from this… It also makes my face and lymph nodes swell around my ears and neck area. I’ve started do trigger point therapy. It may be helping with relief. I know I need a lot of dental work but I probably need to still consult with the medical side. This is truly stressful. Of course stress us not helpful. I’m seeing another dentist soon. It’s supposed to be a TMJ Specialist. I’ll let you know how that goes. 
I’m sorry you had to go through this, but thank you for sharing!
sorry for hearing this