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We are pleased to introduce Sophia Stone, a new contributor to The TMJ Association, whose passion is to separate TMD fact from TMD fiction. Sophia has a background in medicine and research and can draw on her personal experience as a TMD patient.

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Pain in Your Head Hurts More Than Elsewhere in the Body

Terrie Cowley, Co-Founder and President of The TMJ Association, often remarks that patients tell her that the pain they feel in their jaws is worse than pain elsewhere in the body.

2018 NIDCR and Hill Visits

On February 26, TMJA staff participated in the Friends of the National Institute of Dental and Craniofacial Research (NIDCR) Patient Advocacy Council (PAC), an umbrella group comprising non-profit organizations that work together to advance dental, oral,

Suzy's Story

  • May 13, 2015

My TMJ disorder occurred when I was about 10 or 11, after diving into very shallow water at the beach at the start of a one mile ocean swim competition. I had a concussion. I imagine this is when I crushed the growth plates of the condylar heads bilaterally. Therefore, I have not had normal temporomandibular joints since that time. I was unaware of the problem since I never went to the doctor following the injury. I was pain free until I was 33 years old when severe headaches began to bother me. They got worse, and it became evident that my jaw was the cause of them, since my jaw had started to become painful. At this point I sought treatment from dentists. I was given soft splints for the first two years of my condition. My condition continued to worsen. By the fifth year of having this disorder, I had seen at least seven dentists or physical therapists, and undergone a multitude of treatments. After spending a small fortune on care for my jaw, I was progressively getting worse with severe migraine and tension headaches. I have not had a headache free-day in over 17 years now. When I wake up in the morning I feel like I've gone a round with a trained boxer. I have extremely limited range-of-motion in my jaw. Just about everything I do in life aggravates my jaw. I am limited to liquids and very soft foods for nourishment. A simple smile is out of the question. My pain level is at 7/8 on average, but goes to a 9 regularly and occasionally a 10 where I would give anything to put an end to my suffering. Nothing that I tried has helped and many treatments only made my condition worse. I no longer have discs in either joint, nor cartilage, and my joints are now bone on bone and arthritic. Both of the masseter muscles have overpowered the mandible due to being in spasm and I therefore have substantial mandibular notching bilaterally. I have a great deal of inflammation in and around the joints and many of the muscles have become substantially fibrosed.

When I first started having symptoms, I was very hopeful that there were treatments and procedures available to help me. My pain progressed very quickly. Within a year of showing signs of TMJ I was unable to lead a normal life and only left the house to work or seek care for my jaw pain and headaches. I spent the rest of my time trying to relax and doing home exercises and modalities. I took only ibuprofen, vitamins, minerals and supplements – including omega 3s, glucosamine and chondroitin sulfate. I refused all pain medications for the first 5 years of this ordeal. As a chiropractor, I chose to rely on the most natural treatments. I was unable to have a social life, and I still have no social life. I quit talking to friends that I left in California, because who wants to talk to someone in pain all the time. I didn’t want to depress my friends, and talking is difficult enough, so I severed ties with everyone. I have seen more “TMJ Specialists” than I can remember, but the number is well over 15 at this point. Much of this was paid for out of pocket, since TMJ disorders were not covered by insurance at that time. Here is a list of the treatments/procedures I’ve had over the last 18 years. I have spent many tens of thousands of dollars and a tremendous amount of time seeking care.
 

  • Splint therapy. I have had at least 15 splints, plus one anterior jig. None helped or in some cases caused more pain and discomfort. Each splint entailed a slew of visits to adjust the splint. Usually once a week for a few months then once every couple of weeks.
  • Nerve blocks. I have had at least 7 precise nerve blocks done with the use of imaging. I have also had a couple of them done without imaging. None was successful.
  • Cortisone shot. I had one only since it increased my pain tremendously.
  • Botox injections. No improvement.
  • Occlusal Adjustment. Several dentists shaved down several of my teeth with a drill to correct occlusion issues.
  • Orthodontics. I was told that my problem is an occlusion issue and that braces would solve the issue. I got no relief from having the braces for 2 years.
  • Surgery. This made my condition quite a bit worse. Had physical therapy for over 10 months following the surgery, went 5 times a week for a month and a half, then 3 times a week until the end. I told the surgeon that I was doing worse after the surgery. His only statement was that I needed a different antidepressant. He also said that my discs were in the correct position and were moving as they should. I had an MRI done a few months after this statement that showed that the discs were no longer functional, one was completely gone and the other was so out of place and deformed to render it useless.
  • Arthrocentesis. This did nothing but aggravate the condition in the short term, and had no negative or positive result over time.
  • Physical Therapy modalities. This including Tens, US, IFC, trigger point therapy, acupuncture, acupressure, massage, heat, ice, active and passive ROM. Heat is helpful for minimal short term relief. No other PT therapies have been beneficial.
  • Medications.  After 5 years of this ordeal I decided to give pain medication a try.
    • Codeine. Did nothing to alleviate pain.
    • Fentanyl. Did nothing to alleviate pain.
    • Tramadol. Did nothing to alleviate pain.
    • Vicodin. Caused increased clenching and spasms especially at night. Most of my teeth have micro fractures due to bruxism and clenching.
    • Methadone. Similar to vicodin in that it increased tension and spasms of the jaw muscles.
    • Percocet. Helpful.
    • Oxycontin. I found this to be the most helpful. I remained on this medication for about 3 years beginning in 2000. I took myself off this medication due to GI discomfort. I spent 6 years off all pain medications. I was basically unable to get out of the house much due to light and sound sensitivity and difficulty being in a car with all the stops, starts, turns and bumps in the road. Staying in the basement at my parents house offered the darkest, most quiet place for me. My mother and father walked and cared for my dog. For the last 3 years or so I have been back on pain medication. Since being back on pain medication I can at least get out of the house enough to walk my dog and get to the gym to swim a couple times a week.
    • Muscle relaxants. No benefit.
    • Tranquilizers. No benefit.
    • Neurontin. No benefit.
    • Pregabalin (Lyrica). In the 2 ½ week trial period, I had severe GI discomfort followed by projectile vomiting. This occurred 4 times in that short period. The GI discomfort caused severe bloating, which reminded me of the movie “Aliens”. This pain lasted about 4 hours each time before vomiting. During this time span I would lie down groaning and grasping my abdomen until the release via vomiting. This medication not only caused such severe side effects, it also had no effect on my pain.
    • Antidepressants. I have been on at least 11 antidepressants. None have helped thus far and most of them cause me to clench and spasm more than normal.

Over-the-counter and prescription anti-inflammatory medications. This included prednisone, diclofenac sodium (both tablet and gel forms), naproxen, celebrex, Vioxx, toradol, ibuprofen etc. Their effect was very limited with a temporary improvement. Ibuprofen is as good as any that I've been on.

I used to be extremely active. I grew up being very athletic and loved doing just about anything outdoors. I was a nationally ranked swimmer; I surfed, camped, hiked, rode bikes, was at the beach at every opportunity, traveled and enjoyed being around other people and my family. I was rarely at home. I excelled in school and loved challenges. Having this disorder makes everything difficult. Eating, talking, walking – all translate pain to my jaw. Driving is very limited, since every bump in the road, every turn, stop and start is an excruciating experience. Migraine headaches ensure that light and noises are so aggravating that I need to limit access to them as much as possible and makes outdoor activities a rare occasion. Relationships are basically nonexistent, except with my family and physicians. Eating out or going to a movie are extremely rare occasions. I have lost just about everything I had worked hard for, including my career. In other words, I used to have a very socially and physically active life, but for the last 18 years this has changed dramatically. The thing I look forward to the most these days is walking my dog and swimming, when I'm able to get to the gym. Since driving is difficult for me, I do as much exercising as I can at home. I have always been diligent about doing all of my jaw exercises and modalities at home. I needed a pool to swim in since it is about the only exercising that I can do that is fairly comfortable to do. Since gravity is taken out of the picture there is little aggravation to my jaw. I joined a fairly exclusive gym that has two pools so that I can swim in relative peace (kicking in a pool with a kickboard mostly). I can go to this gym at times of the day when the pools are usually devoid of people, so it's very quiet and mostly secluded.

Pain medication has been helpful in allowing me to leave the house a bit more often. Being able to walk, move and drive more comfortably is extremely important. I can tolerate light and noise a little better than in the past. While I was off pain medication for almost 6 years. After having this affliction for about 9 years - I spent 6 years of my life living in a dark and quiet place in the built-out basement of my parent’s house. I was able to spend time with my family on a limited basis and was rarely able to walk my dog or get to the gym. I can now walk my dog almost every day and can get to the gym a couple times a week. This might not sound like much to most people, but to someone with severe TMJ disorder with frequent migraines and daily tension headaches, this is huge. I've never abused the pain medication and have always followed the rules. I might not have a great life, but I have something to look forward to. I don't know what my life would be like without my dog.

In the past, I was optimistic and hopeful with every new treatment that was offered. I was told by many different doctors that this new treatment, therapy or surgery would fix my problem. After having had all of these different treatments sometimes several times over with no benefit and in some instances causing more damage, I have lost a lot of that optimism. It has seemed that most doctors or dentists that I have seen have not had my best interests in mind. This is a very difficult disorder to treat. The TMJ is a very complex joint. There are no real standards and some doctors go to a weekend seminar on TMJ and then advertise that they are specialists in the field. There is so much confusion and misinformation about TMJ problems that it's very difficult to treat.

The next health care professionals that I intend to see will be the ones that offer a different course of action with proven results. I don’t see myself sitting in a noisy, bright office explaining my condition to new doctors who offer the same treatments that I’ve done over and over again. I am especially not in the mood to be let down once again. Every time I’ve had something new done, I was told it would help. The surgeon that I visited told me that he had a 98% success rate. The surgery failed. How come I was the 2% failure? Well, it's nice to give patients hope I guess, but with a fib like the 98% success rate, it made my loss of hope land like a lead balloon. I will not allow myself to be let down anymore. I am hopeful that there will be a breakthrough treatment or procedure available to me in the future. At the present time I continue to do whatever I can. I will continue to do my jaw exercises and modalities and general exercising. I continue to seek help from my psychiatrist and my psychologist.

The NIH suggests that after all else fails, seek care from pain specialists. This was never my first choice. I never wanted to be on pain medication, it just happens to be something that improves my life.

I hope that this helps you to better understand the severity of my condition and the fact that I have spent many years searching for treatments that might alleviate my symptoms. This has been a very long road. There is no magic bullet. I wish I could jump in a time machine and re-swim that race that was most likely the cause of this. I had so much to look forward to in my life. At this point, I've missed so much of my family’s lives as well. I've missed weddings, graduations, school games where my nieces were cheer-leading. Family get-togethers are difficult, unless we have a quiet lunch at home. Restaurants are out of the question. Movies are also very rare. My family has tried to be understanding, but it is even hard for them to really get what this is like for me. My nieces really don't know me as well as they should, and that is the biggest loss in this entire scenario. I never wanted to miss out on so much of their lives, nor that of my family. I love my parents, but I never thought I would ever have to rely on them to care for me. They are reaching an age where they need help and the last thing they need is me living with them. I had a great life for 33 years, but I feel that I’ve lost the best years of my life. For such an independent person to have to rely on others for so much, and to feel like such a burden, is almost unbearable and extremely hard to handle. 

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