From www.tmj.org
Temporomandibular Joint and Muscle Disorders (TMJDs) refers to a complex and poorly understood set of conditions that can cause pain in the area of the jaw joint and associated muscles and/or problems using the jaw. Both or just one of the TM joints may be affected. TMJDs can affect a person’s ability to speak, eat, chew, swallow, make facial expressions, and even breathe.
I was first diagnosed with TMJ disorder when I was 18. The flare that caused me running to the dentist was a particularly bad one. After a few days of increasing pain and stiffness, my jaw locked up in an open position and I was unable to close it. Unfortunately, my experience at the dentist’s office only made things worse. The hygenist couldn’t understand what I was trying to tell her and she forced my mouth to open wider so she could examine me. This experience made me very wary of dentists. It took me several years, nearly a decade, to find a dentist who had TMJ himself and made sure his entire staff knew how to care for TMJ patients. Over the years, I wondered if I was missing out on effective treatment by avoiding dentists. My current dentist has been totally honest with me. There is no cure for TMJ and most treatments are worthless.
I learned pretty early on to hide my pain from the world. When people ask you “how are you?”, they don’t really want to know. Anyone who doesn’t live with chronic pain can not understand it. Even my family doesn’t really know how much pain I have. All they see are bad days when I can barely control my temper, have no patience or maybe drink a little too much. The problem is that it’s a vicious cycle. Stress causes me to clench more, the clenching causes pain and insomnia, which causes me to lose my temper, wrecking havoc in my personal life, which then causes me to clench more. In my younger days, I could break the cycle with pain medication. Today, I know that is not an option. I just can’t go down that road again.
When I was in middle school, my best friend’s father shot himself because of the pain of TMJ. At various points in my life, I have been able to understand his actions. Sometimes I think I would be willing to do anything to be rid of the pain. I have to remember the important things in my life to keep me grounded. My children, my husband,my family, and my friends keep me here. I live through the pain so I can be here for them.
We live with chronic pain in our household, too… Dee has very bad fibromyalgia and arthritis.
Chronic pain is an invisible disability and people just don’t understand.
I’m so sorry to hear, I’ve had TMJ for years, but a much milder case, it sounds like.
But, my mother says that my labors are so easy because I learned to live with low-level pain so well, I never knew I was in labor until I got to the good stuff.
There is a difference between hiding the details of your suffering and just letting those close to you know that you are suffering at all.
I am a little concerned at having to read about this, here, but trying to focus on the constructive.
If you let us know what is going on, it can make a difference. In hiding it so thoroughly, you are almost inviting the stresses that make it so worse. If you can’t find a way to let us know, we can’t do anything to help run interference on the stressors that start you down the negative spiral. Worse, we may be generating the very stress we would otherwise be a lot more conscious of if you tell us you are having a flare up. We don’t have to perfectly understand what you are going through in order to help. But if we don’t know the true cause of your irritation with us, you are robbing us of any chance to help at all.
I agree with you–those who don’t experience chronic pain cannot understand it. I’ve spent so much time trying to increase awareness of chronic pain, and at times it feels like I’m spinning my wheels. Hang in there.
Living with a chronic illness is so difficult. I’m sorry to hear that those around you don’t understand. I think one of the hardest things about living with chronic pain is being able to adequately describe it to others, and not be viewed as ‘lazy’ or a whiner. Hang in there, and when you’re feeling bad, definitely let someone close to you know – friends can’t help if they don’t know anything is wrong, you know? I think that a lot of the time if people would ask for help they would be surprised at the response they get. People love to help!
Oh, and by the way, I have a TMJ disorder support and information site – sometimes it helps to talk with a group of people who you *know* truly get it. http://www.tmjfriends.com Hope to see you there!
I too lie with chronic pain, and have learned to keep quiet about it to make others more comfortable- i mean all they feel is helpless, right? i hate it feeling like an excuse to not do things etc, but the pain is real. you are in my thoughts and prayers! *HUG*
Sometimes the clicking while I am eating drives me crazy. It is also embarrasing when eating with someone else. I experience no paint, just the sound of the clicking jaw, which is extremely grating and sounds painful. Does anyone else experiece this clicking? I would like to relate to someone.
I am sure people have tried almost anything to relieve the pain and soreness that TMJ has created. Has anyone tried massage therapy? I know of a great tool called “The Trigger Wheel”. Many people I know use it for TMJ.
Ken
Hello there,
After years of trying to find someone that has had pain just like me, I feel relieved to know that I’m not the only one out there. I feel hopeless and alway in pain. I was born with a jaw problem that the older I got, the worse it was. I am now only 21 with TMD, arithritis, and rapid deterioration. At the age of 12, my TMJ specialist told me that I have a jaw of about a 70 year old. I never understood how to control my pain of my jaw consistantly dislocating and putting me on my back for days. The doctors didn’t know how to help me and what to do to make me feel just alittle bit better. I am constantly sitting in the shower or laying in my bed crying because the pain hurts me. I don’t know what else to do. I feel hopeless sometimes. The older I get the more I can manage my pain. I had a child that will be 3 this year and sadly her jaw pops out of place and pops. The dentist told me not to worry about it, but I can’t help to worry when she cries because her face is hurting and her jaw is popping. I still continue to strive for excellence through the pain and just keep telling myself that one day there will be a great cure. The only choice I will have is going to be surgery in the end. Until then I try to not worry about it. But i just wanted to know that your story touched my heart!