Living With TMD
MORE VOICES OF TMJ
Jun 23, 2015
TMJ patients suffer on a daily basis and face real-world challenges at work, in family life and in their interaction with the health care system. Over the years, thousands of sufferers have shared their real-life stories.
There are many stories here that will move you and those you know to become active in this vital movement. Follow us on Facebook and Twitter. Repost these stories on YOUR Facebook page. Tweet about them.
If you have a personal story relating to TMD then drop us a line, record an audio or video message. The point is: if you have a story, SHOUT IT OUT!Let everyone know there is something THEY CAN DO to help. Above all, give generously to the effort to eliminate TMJ disorders. We invite any persons involved in the life of a TMJ sufferer to share their story in whatever format they think best.
Marianne
I made the picture to illustrate for my friends and family how painful it is because it does not show on the outside how it feels inside. And it feels good to know that so many people recognize themselves in my picture because for years I was told it was just anxiety and all in my head.more
Ann's Story
This week has been a pretty painful week and whenever I have bad days I usually end up here so that I can read other people's stories. It doesn't really help the pain, but it helps me stop feeling so sorry for myself for a while when I read the stories of people whose suffering far surpasses mine.more
Teshania's Story
My name is Teshania, and I would like to share my TMJ story. Back in May 2012, I felt like I had an ear infection but also severe pain in my jaw. The pain was so bad that I could not close my mouth completely.more
Kahla's Story
As many of you know, it's hard enough to deal with the symptoms of TMD, let alone the complications of failed surgery or faulty implants. Like so many Vitek implant patients, I'm a veteran of survival. Here's a brief rundown on my storymore
Sue's Story
What if your career relied upon nearly constant talking in high-pressure roles and you suffer from TMDs? For me, as a Human Resources and Training leader, I learned the hard way how this illness is completely debilitating.more
Courtney's Story
I'm a 21-year-old mom. I have been suffering from TMJ since I was 13 when I was fitted with braces. Suddenly, I had terrible facial pain which bothered me for years. It improved over time, until last week, when I needed to have some dental work done. Because I had not had severe pain for awhile, I neglected to tell my new dentist about my previous history with TMJ. That day, I had to sit with my mouth wide open for about 45 minutes as the dentist filled six teeth.more
Iraida’s Story
I underwent bilateral TMJ implant surgery in 2009, hoping to get relief from severe pain. Following the operation, my struggle became more than just coping with the daily pain, but was made worse by the lack of compassion and understanding from health care professionals. Instead of lending an ear to my struggles, my complaints were (and are) ignored. Seeking to alleviate the pain from the first implant surgery, I underwent a second surgery to replace one of the implants, but, damage to the trigeminal nerve had already been done. As a result, I became a trigeminal neuralgia (TN) patient. In short, I sought help for TMJ pain, underwent multiple surgeries, and ended up with permanent nerve damage and constant excruciating pain How did this happen? This is my story.more
Suzys Story
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.more
Brenda's Story of Endless Referrals
In August of 2012, I started having pain and discomfort in my face and jaw. It got very bad quickly, and I couldn't open my mouth or talk. I went to my doctor who said I have a TMJ problem: "Go see your dentist." I went to my dentist and he sent me to an orthodontist, who fitted me with a splint that provided some relief. When things didn't get much better I went to a physical therapist and that helped some. Then I stopped getting better, so he referred me to a pain management doctor, who referred me to an oral surgeon and a periodontist. The oral surgeon did a jaw joint wash out, which has not helped as of this writing.more
Tina & Mackenzie's TMJ Journey
My daughter was fairly young when she had braces. It was during this time I found out that she was born without a permanent tooth in the front. This explained why she never fully lost her baby tooth because there wasn’t a tooth coming in to push it out.more
Janelle's Story
I had probably been dealing with TMD for two years before I first took action in the Fall of 2008. It started out as severe ear pain that I noticed most when I ran outside. I thought it might be caused by the wind, so I would wrap my ears with an athletic band and wear headphones. Finally, the pain was so intense and persistent that I decided to visit an Ear, Nose, and Throat (ENT) specialist. When the ENT reported nothing abnormal in my ears, I think he could tell how confused and disappointed I was. Fortunately, he did something different. He pressed two gloved fingers firmly on the insides of my cheeks. When I yelped out in pain, he explained that the issue was actually my temporomandibular joint, or TMJ, and that TMJ pain often presents as ear pain. He then informed me that he could not treat me and referred me to my dentist.more
Kate's Day
Kate was in her early 40's when she was diagnosed with TMD. She had a history of head injuries as a child and knew that she also ground her teeth at night. About the same time her TMD was diagnosed a neurologist diagnosed fibromyalgia. Over the past decade she has a variety of treatments including physical therapy, massage and drugs to treat fibromyalgia.more
Eryca's Story
I've suffered from TMJ Disorders since high school. My teeth grinding and clenching is so severe that I have cracked a tooth and had to have it removed. I wake up with severe pain in the jaw and constant headaches. I started seeing a naturopathic doctor who said it’s very likely I have a magnesium deficiency. She put me on magnesium pills taken nightly. The very next morning I woke up and for the first time in ages my jaw was NOT in pain! Magnesium is also a natural muscle relaxer. It has significantly reduced my nightly teeth grinding and subsequent TMJ and jaw pain and headaches.more
Brittani's Story
My TMJ problems started when I was 13 years old. We're not 100% sure what started it, but my doctors think it was a combination of me already having Juvenile rheumatoid arthritis and the fact I had my 4th open heart surgery and I was intubated for a long amount of time. After the surgery my jaw started clicking and it started to hurt a lot. About three months later, I was back to school, eating lunch with my friends and my jaw locked open. I started freaking out, my friends rushed me to the school nurse & she drove me to the ER. This would soon become my life.more
Katherine's Story
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.more
Beth's Story
After injuries to my jaw, from years of falling off green and problem horses, a couple of bad spills left me with excruciating ear and neck pain. After seeing numerous specialists, I was diagnosed with a TMJ dysfunction and began splint treatment with an orthodontist. After a couple splints, braces, and a lot of physical therapy, I was better. Then I fell off another horse (my equilibrium was still off). Another round of splint therapy didn’t work as well so I was referred to a surgeon. My opening was in the single digits.more
Debbie's Story
I have been a diagnosed TMJ sufferer for more than 26 years. My story is a rather lengthy one. But the short version is, I still have pain and now I have severe nerve damage. I always tried to do the least invasive treatments and they seemed to work but only for a short while. So, in the past 11 years I have had 4 surgeries to my jaw. The first to just the left side in 2000 was to repair a dislocated and torn disc. I was pretty much pain free for 5 years when the “warranty” ran out.more
Katie's Story
My TMJ pain comes in many forms. It starts with soreness in my jaw, usually one side or the other, not both at the same time. As it worsens it feels like tooth pain. Terrible tooth pain that moves from tooth to tooth so you can’t tell which it is. When it’s really bad the entire side of my face is in pain. My teeth, my cheeks, my jaw, my ear. It can feel like an earache, or a headache. It can feel like my teeth are going to fall out of my head. My neck hurts, my back hurts, my shoulders hurt. I think that I will die before the pain goes away.more
Karen's Story
At age 48, permanently disabled and having suffered 45 years of endless medical illnesses from the age of 3, with 67 total surgeries, 35 of them related to the TMJ alone, one wonders what keeps my will to live... of course my loving family, but my dogs are the center of my life! It is as if I am living in two different worlds, or alternate realities; one is a nightmare of relentless pain and the other is pure compassion with a different species.more
Graeme's Story
I am a 39-year-old TMJD sufferer living in Sydney, Australia. I was first diagnosed with TMJD in approximately 2003 after being concerned about my frequent headaches in the temple region. I suffered with debilitating headaches as a child and then from adolescence through to adulthood. When I was about 6 years old, I fell from the top of a 20ft waterfall onto rocks below. I now wonder if that or other childhood injuries were a contributing factor to my TMJD.more
Joanne: Thoughts from the Mother of Karen, A TMJ Implant Victim
There is no way to explain the emotional heart-wrenching pain we have endured over the past 17 years watching the life of our only daughter be devastated by the effects of her multiple TMJ and facial implants-implants needed to enable her to chew withomore
Sally's Story
My TMJ issues have been present for the last 10 years. It started as migraine headaches and progressed into neck and shoulder pain. Doctors sent me to physical therapy and treated the headaches with numerous medications. We started narrowing down the pain to the jaw area. One day my physical therapist tried to loosen up my jaw for some stretching and didn't like what she felt. She stopped immediately and told me I should go see an oral surgeon. At first I didn't understand but I was willing to try anything to treat the pain issues I was facing on a daily basis.more
Karen: My Long and Endless Journey
In 2007, I underwent arthroscopic surgery on my right joint to try and correct a dislocated disc and attempt to increase my range of motion which was about 15mm at the time. The surgery went well and I was able to increase my jaw opening to 40mm, but the celebration was short lived as two days after the surgery my ROM decreased to about 15mm again. Boy I can remember those two days of having 40mm and having the pain completely gone. It felt like I was reborn and was even able to eat an apple which I hadn’t been able to do since before the jaw surgery in June of 2005. It was like a blind person being able to see for the first time in years.more
Jenny: A Soldier Battles TMJ Disorders
My name is Jenny and I am a soldier in the United States Army. Yes, soldiers can have TMJ problems. I am married and have one dog named Merlin (my second partner in crime). My story started out about six years ago when I had my initial bi-lateral sagittal split osteotomy. I never had TMJ disorders or even heard of TMJ until then.more
Self-Help Tips That Are Working for Daniel
Hello, my name is Daniel. I have had a TMJ issue for the past 3 years. I have been diagnosed and treated by over 7 different doctors ranging from family doctors, multiple dentists to oral facial pain specialists and surgeons. I have had Cat Scans and an MRI. My TMJ diagnosis has been confirmed with no results for a cure. I have not had any surgeries. I have read many books and articles regarding TMJ. Now the good news. I still have TMJ with the limited opening but have taken my pain levels from 90% all the time to almost 1% very occassionally. I have done most of this on my own by doing a few simple things. Facial and head pain with TMJ can be unbearable at times. I hope the following advice can help you.more
Marion: Conservative and Reversible Treatments Are Key
Facial pain and jaw pain were once a big part of my life. For a time, I thought it would be the end of me. Eventually, I recovered with patience, physical therapy and time. This phrase saved my life: Treatments should be conservative, reversible and noninvasive. Following that advice allowed me to avoid harmful treatments. And eventually, I got better. That was more than 10 years ago and though I am normal again, I will always remember those difficult days.more
Sharon: Thoughts from a Daughter
There comes a time in everyone's life when there is a natural role reversal between parent and child. The "adult child" takes the reigns of the ailing parent's physical, medical, emotional care and financial responsibilities. And ultimately in this time, parent and adult child find a better understanding and respect for each other through this bond.more
Suzanne: Teen Awareness and Support
Suzanne is a teenager who wants desperately to live life free from pain and discomfort. TMJ symptoms have forced Suzanne to stop doing what most teenagers take for granted—hanging out with friends, going to school, and participating in sports and music. Suzanne decided to do something to help herself and began researching TMJ diseases and disorders on the Internet. She discovered the Association’s Web site and was comforted to know that an organization existed that truly understood what she was going through.more
Dianne: Why Scientific Research Is Essential
Dianne contacted The TMJ Association to express her frustration with TMJ problems. Dianne wrote: “My doctors are stumped and I’ve exhausted every therapy there is, including splints, physical and chiropractic therapy, acupuncture, trigger point injections, surgery, and remain on many medications including anti-depressants and painkillers. I’ve felt isolated and haven’t encountered anyone with a similar problem yet, but figure they must be out there…I’m glad I found this Web site. Maybe there is a future, hope, recognition and validation for all of us who suffer from painful TMJ disorders! I’ve personally found that this is an extremely difficult condition for which to obtain medical support. It is just as difficult to increase other people’s awareness and understanding of these disorders. We’ve been ignored, discredited and disregarded for too long! My own experience has been very discouraging and depressing thus far, but I hope that there are eventual solutions and answers out there for us with TMJ.”more
Terri: A Light at the End of the Tunnel
At the tender age of 19, I was forced in to a marriage with a man 16 years older than myself. He brutally abused me every single day. Beatings, emotional abuse, rapes, you name it I got it. One day he sucker punched my left jaw 3 times and broke my jaw immediately. Refusing to take me to the hospital and knowing he would be arrested my jaw had no choice but to heal on its own. He did not care that my jaw was broke and he thought it was funny when he would hit me in my face on a daily basis. My jaw would ache and throb so bad that I would secretly & silently cry at night when my abuser was sleeping. It was the only time I could let my feelings out. He was so cruel that he did not care one bit about the pain he was putting me through. He actually thought it was funny at times when he would laugh uncontrollably at me. There were so many times I tried to escape but he was slick, he knew how to keep me a prisoner. I was not allowed to go to the store or any where for that matter without one of his two sons tagging along.more
John: The Importance of Education
John is a former Professor of Finance at American University in Washington D.C. He is married and has three children. The unpredictable nature of his TMJ symptoms put a strain on his family. In the Fall of 2001, John began to seek relief from TMJ pain–ultimately spending well over $10,000 on treatments that were ineffective.more
Terrie: Intended or Unintended, the Unforgivable Injury
TMJ disorders can drastically alter the life patterns of the patients, their families and loved ones. As with any major chronic illness, or the loss of a loved one, everyone experiences the grieving process. In a matter of months or overnight, the patient becomes a totally different person, experiencing unexpected and unfamiliar physical limitations and accompanying fear. The patient is forced to give up not only part of oneself, but also the idealizations and hopes one has had. If these losses are not replaced with hope through understanding and acceptance, everything seems hopeless. Unfortunately, for TMJ patients there are few answers and little that makes sense, which makes understanding, and therefore acceptance, difficult.more
In Treating TMJ
To view or order a free booklet about TMJ Disorders, visit the National Institutes of Health website.
U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES
National Institutes of Health
National Institute of Dental and Craniofacial Research
Office of Research on Women's Health
National Institutes of Health
National Institute of Dental and Craniofacial Research
Office of Research on Women's Health