I was diagnosed with TMD over 15 years ago. I was only in the 8th grade and really didn't know what was going on, except that my jaw sometimes locked open and popped or cracked if I chewed gum for a long time. There wasn't a lot of pain. The pain didn't start to get bad until I was in graduate school in 2007. Maybe it was the stress of grad school that exacerbated the symptoms or maybe it was just a coincidence; I'll never know.

Over the last 5 years I have been through every kind of test, physical therapy, massage therapy and occupational therapy. I've missed days of work because of injections and because the pain and exhaustion kept me from my daily duties. In October 2010, I started becoming extremely fatigued−I was literally unable to keep my eyes open while driving to work. This went off and on for two years before I was finally able to see a doctor. I am a recipient of Obamacare−I qualified for a pre-existing condition insurance plan (PCIP). My pre-existing condition, according to private insurers, was the TMD. Ironically, my PCIP doesn't cover treatment for TMD.

In February, I'd finally had enough and went to my family doc. I was disappointed with the dentist who was treating my TMD. (He said I should feel good about opening my jaw only 10mm.  Feel Good? No way!) So I went to my primary care physician hoping she'd be able to help me think outside the box. In 15 years, I've learned that with TMD, outside the box thinking usually helps more than it hurts. She was flabbergasted at how little I could open my mouth; she couldn't do a thorough exam of my throat because I couldn't open my mouth wide enough. She kept me on NSAIDS (non-steroidal anti-inflammatory drugs, a muscle relaxer, and put me on Tramadol. She also prescribed another NSAID for breakthrough pain. Then she attacked my symptoms of fatigue. We took the more obvious road, considering anemia or another blood disorder. I went to a hematologist who was also amazed at the lack of range of motion in my jaw. He believed me when I said how much it hurt and how severe my TMJ was.  (I often find that docs, even dentists, won't believe me until they see for themselves...which frustrates me to no end...) He ran a multitude of tests, in fact in a span of 4 days I had blood drawn three times for 35+ blood tests. While waiting for my results the hematologist put me on a prednisone pack. I told him it made my jaw sort of feel better but it felt like it wasn't quite enough. (On a side note, my plantar fasciitis cleared up fast!)

My results came back and he told me hematologically my blood was perfect. Iron levels, thyroid, rheumatoid arthritis, Lyme, and the multitude of other tests came back with great numbers. Except one. My C-reactive Protein, which measures inflammation in the body, commonly tested in cardiac patients, was literally off the charts. A normal range is 0-8  and mine was 19.6−more than double the high end of normal. The hematologist discharged me on condition that I would follow a nearly 4 week regimen with a high power prednisone. And I did for 3 and a half weeks. I took this steroid like it was my job. The effects were immediately felt; my jaw was starting to feel better, massage therapy was becoming more therapeutic and I was able to finally do stretches. What's more, two weeks after I was off the steroid, the extreme fatigue went away! I was starting to feel like the old Kat−the one who loved to laugh and smile... in short, it was a miracle.

I thought my story would end there, and I would be able to give some people hope that treating TMD as a blood disorder might work for someone else. I even began to back off my meds. I came completely off the Tramadol, and backed down on  the NSAIDS (the med for breakthrough pain wasn't even being used). I also backed down on the muscle relaxer. And when I did that, I still felt great.  But something else started happening. I started having horrible gastric reflux, but on top of that was a pain in the center of my sternum. I thought I had a gallbladder problem.  My regular primary care physician was out for the week and the office wanted to get me in ASAP especially if it was gallstones/bladder.  So I settled for another doc in the practice, thinking they should all be pretty similar in their treatment if they're in the same practice.  Boy was I wrong.  This doc refused to listen to me about my TMD and told me I needed to come off all of my meds and said it as though I should never disagree. I told her, and my regular primary care physician knows this, that my TMD pain and controlling it was my top priority. I know what NSAIDS can do to my stomach, but I'd already started backing down and those symptoms got worse.  She told me that my TMD can't be that bad and that she would give me a narcotic.  I told her that the NSAIDS control my inflammation which causes most (but not all) of my pain. She didn't care and gave me the prescription.

I left the office for the first time since I began with this group, in tears, not knowing what I was going to do. The pain I have in my sternum area was bad, but I could work through it, but the pain in my jaw has caused me to leave work, miss work and is generally not pleasant.

I never realized how great my regular doctor was, until her co-worker told me that narcotics would be better than NSAIDS.  My primary care physician would never have told me to completely stop taking my NSAIDS.  She would have figured out what was causing my new symptoms and then treated the cause.   If it was just my meds, she would have worked with me to find a new way to manage the TMD or helped strike a balance between antacid/nexium type meds and my current meds.

The bottom line is that if you have a doctor who understands your TMD, and understands how important it is to continue to treat it, DON'T ever leave that doctor.  I will be scheduling another appointment, this time with my PCP, to ensure that my continuity of care continues.  My TMJ remains under control at this time. I'm not thrilled that I'm going to be on meds long term, but if it gives me my life back.  It's worth it!

I will keep you posted, but I wanted to share my story with you, because it's so important for TMJ patients to share what works, what doesn't, and how to handle docs who don't take our concerns seriously.