This week marks 5 years of dealing with TMJ. Well, actually 5 years and about 2 months since the pain started, but 5 years since I found out what the problem was and found someone who could actually help me. That someone is Dr. H. Clifton Simmons in Nashville, TN.
While Fibromyalgia has been a pretty major issue in my life the last 3+ years, my issues started a couple of years prior with TMJ. This time five years ago I was heading up to Nashville to meet with Dr. H. Clifton Simmons for the first time. I’d spent the prior two months in serious pain, beyond anything I’ve experienced with Fibromyalgia. In June of 2008 I got braces to correct over-crowding of my teeth that had caused gum erosion. In early 2008 I’d had 10K worth of gum grafting done, and they told me that if I didn’t correct the over-crowding I’d eventually have to do it again. I figured well if I got braces it would correct the over-crowding and fix that problem AND it would correct my crooked teeth and improve my smile. I figured it was a win-win for me. I shopped local dentists and picked one that I felt comfortable with, however as soon as the spacers went in I started having massive migraines beyond anything I’d ever had before. I figured “my teeth are moving” and once we got past the initial steps of getting the braces on it would settle down. It didn’t. I complained to my dentist but he ignored me over and over again. The only relief I could get was at the chiro and that didn’t last. I was in his office three times a week getting acupunture and adjustments and nothing helped. I couldn’t work, I couldn’t do anything but lie on the couch in pain. My GP at the time was out of the office due to injury and her temp replacement just kept throwing meds at me. He kept me stocked in samples of Trixamet, so I alternated between that and Excedrin Migraine and Relpax (which my insurance limited my access to). Note: The insurance also limited my access to the Trixamet (4/mo) and later I figured out why. When I could stand to do anything I was online trying to figure out why I was in so much pain. I researched “migraines and braces” to death and found nothing. It wasn’t until my chiro suggested “I wonder if you have TMJ” that the light went on. After that I started researching TMJ and migraines and finally started finding what I was looking for.
I went back to my dentist and expressed just how bad the pain had been, he still didn’t listen. I finally had tell him to take the wires off and that I was not completing this process. I’d paid up front and had to fight him to get my money back, but I did get it back. Through my research I found a wonderful man Dentist that specializes in TMJ. He’s researched it and written many papers on it and 90% of his practice is devoted to TMJ patients. He sees patients from across the country, and I was definitely not alone in driving multiple hours to see him, nor was I his most distant patient. First I emailed him and told him what was going on. He himself responded so quickly that not only could he help but to please call his office ASAP. I did so and they were able to work me in pretty much the next day. I found out later, this is his MO when it comes to “emergency” situations. He will go out of his way every time to help.
That first visit, we arrived early for our 4:30 appt and he basically cleared out all his other patients before he got to me sometime after 5pm. Then he spent over an hour with me, examining me and talking to me about what was going on. Out of 50+ tender points in my head and neck that he touched (the same pressure that they use to check the Fibro tender points), I reacted to 29 of them. In the end, he gave me 5 shots. There was still a lot of pain but we both agreed that 5 shots was plenty for one day, and those 5 took my pain from a 10+ to a 4. Now, keep in mind this was before the Fibro and I wasn’t used to dealing with this kind of pain. This was the worst pain I’d ever experienced… until about a month later….
That day when we left I got a milkshake and my stomach reacted by kicking me. At that point, I knew I had an ulcer from the meds I’d been taking. I went to a walk-in Dr later that week and confirmed it after they sent me to a GI doc. The doc also sent me for tests on my gallbladder, all of which came back negative. However, over the next month those proved to be wrong as well. During the next month I ended up in the ER three times with combination of stomach pain and migraines. When the two hit together that was by far the worst pain I’d ever felt. Even to this day, any pain I experience is compared to that time. The last ER visit resulted in being admitted to the hospital for a week before a different doctor finally confirmed that my gallbladder was going bad and removed it.
Things did begin to improve after that. I returned to Dr. Simmons in November and began his TMJ treatment. His “initial consultation” is a 2+ hour visit that re-iterated some of what he’d told us on that first visit and rechecked those same areas. I was also fitted for two dental appliances (retainers), one to wear during the day (all the time) and one for sleep. I returned to visit him monthly for the next year or so, until we both finally agreed I’d improved as much as I was going to for this portion of the treatment. The second portion of the treatment involved putting the braces back on. This scared the hell out of me, but I trust Dr. Simmons. After a month or so of braces we determined that I still could not tolerate the rubberbands, so he took and alternate attack and built up a ridge on the back of my top teeth to force my jaw to stay where it should rather than slipping back. We continued with the braces with minimal problems for the next year. I was amazed at how much better things were with the braces than they’d even been with the retainers.
Two years ago the braces came off. The total treatment time was right at three years from the time I first met Dr. Simmons to the time the braces came off. I still wear a retainer when I sleep, religiously. If I forget to wear it, I feel it the next morning. I also have wires permanently bonded to the back of my teeth on the top and bottom to prevent the teeth from slipping out of alignment. I check back in with Dr. Simmons once a year so he can make sure I’m still good.
Last week I went for my 2 year post-braces visit. I told him about this on-going cluster headache/ migraine cycle I’ve been in. I’ve read a lot about ti and many theories suggest that it may be related tot he trigeminal nerve (which I’d thought was related to TMJ). I asked him about this and he confirmed that yes it was the nerve that causes the pain in TMJ and that YES (emphatically) the cluster headaches were directly related to the TMJ. His words were that Drs are always coming up with new ways to classify headaches, but that the reality is that most of them are related to TMJ. He asked where it was hurting and then pressed on a tender point. Yep, that’s where it hurts! He said he could give me a shot (or two) that would make it go away, and pushed on two more tender points, confirming that both of them were quite sore.
He gave me two shots (one in my jaw, from inside my mouth) and one in the back of the neck/base of my head. They helped almost instantly. However the amount of improvement decreased greatly by the time I got home. He did say that I could/should come to him when these headaches start for a series of shots and that doing so would knock them out. As it is the one set of shot definitely helped and this week has been far better on the headache front than things have been since this headache started almost 6 weeks ago.
TMJ is one of the most common co-existing conditions with Fibromyalgia. If you asked Dr. Simmons I’m pretty sure he’d tell you that Fibromyalgia really IS TMJ, as he relates many of our symptoms to TMJ. I’m not sure if that’s the case or not, but I do know they are very much inter-related. If you have a lot of pain in head and neck, I can’t recommend enough that you seek out Dr. Simmons or a TMJ specialist closer to you and be evaluated. I can’t imagine if I’d had to go through all of this after the Fibro really kicked in, but at the same time I can’t help but wonder if the TMJ was the instigating factor in the Fibro. As with so much of our illness it’s all a bit of a Catch-22/ Chicken & Egg scenario.
Note: Not all health insurance plans cover TMJ treatment. I’m lucky that mine did.
Have you ever been tested for Lyme? Your story sounds very similar to mine. I am from Florence, AL living now in Clarksville, TN. I am currently in the process of finding someone to address my TMJ. Thank you for sharing your story.
I have but it was negative. The thing with lyme is the tests are so unreliable. If you are dealing with TMJ I can’t suggest enough that you contact Dr. H Clifton Simmons in Nashville.
Karen Stevenson says
I’ve been having problems with my temporomandibular joint since my early 20’s (I am 46 now), and despite spending untold hours seeing specialist after specialist along with a *failed surgery, I am still in pain the majority of the time. It is gotten to a point where I am nearly tempted to believe that I’ve been misdiagnosed, and something more sinister might be causing my pain, but I can’t comprehend how an individual could be misdiagnosed repeatedly over a period of two decades. There is a whisper that my grandmother might have had TMJ, but she never complained (and I never knew her), so it is hard to know for sure. Has there been any conclusive study done concerning a genetic predisopostion to TMJ? At least if it’s “in my genes”, I may be able to finally just accept the *crappy hand I’ve been dealt. Thanks in advance, -K
I’ve never heard of their being a genetic link with TMJ, but I’ve never heard that there isn’t either. I’m pretty sure that mine is the result of poorly fitted orthodontic braces, and lack of care in applying them.