TMJ Forum - TMJD symptoms and need for support

Have I been praying for you? YES! Do I care about you? YES! That being said, do you really think you are the only person who suffers with this horrible dysfunction called TMJ? I have had every single symptom you listed at one time or the other except for whispering voices (except maybe I have since I can’t hear people very well as I’m losing my hearing).

I have found in my 28 years of battling this nightmare that most doctors do not care, but that's mainly because they do not understand. The same with friends and family. How can we really expect them to understand this curse? It seems too bizarre for two tiny little joints that act as one to cause so many pains. When you break a finger on one hand, it doesn't affect the fingers on your other hand and that's how most of the body works. Not TMJ, both TMJs must work together properly. Add to that all the muscles, tendons, cartilage, nerves, arteries and veins wondrously and marvelously put together in such a very small space really - the head.

And who would think that the TMJs would act as an axis for the whole body. I understand it because I can feel it, but I can't explain to someone else very well, even fellow TMJ sufferers. There are some doctors who do understand but to find them is a trial in itself. I have been close to 100 or so doctors/dentists over the years in regards to my pain and most have been a total waste of time and money. MOST! I was also not treated appropriately when diagnosed (which at least that was simple in my case, not always the case) because the experts I was seeing didn't understand TMJ well enough and definitely didn't recognize that each person responds differently to treatments. But they did their best.

That's not a lot of consolation when I consider that I've lived most of my adult life in severe pain. I've been suicidal a few times. I've screamed at God many times. Why didn't most of my doctors, family or friends care? Why didn't God care? Why did He want me to suffer so much? I believe I know the answers to the last two questions now and would go thru it all over again if I had to, but praise God, I don’t.

The first thing you need to do is stop feeling so sorry for yourself. It just doesn’t help one iota. Know, though, that you are NOT alone. I thought I was until I discovered TMJ support sites on the Internet. There are so many people suffering and many so much worse than me. They gave me energy, refreshment and lots of resources.

Second, research the Internet, read all the TMJ books on the market, become more knowledgeable than most doctors. But, NEVER throw it into their faces. It's mostly for your wellbeing (i.e., when someone starts talking surgery without trying anything else, you’ll know to run).

Then start serious doctor/dentist hunting. This is the part that may drive you crazy even to the point of severe depression. It did me. Don't give up when the first 20 doctors can't help you. If the first Neuromuscular Dentist couldn't/wouldn't help you, go to another and another and an..... or find a Functional Joint Orthodic dentist (Gelb 24/7). Sometimes even a simple family dentist may surprise you and make the best bite splints (as in my case).

Expect all of this to take time, sadly. But while doing the above steps, you should ask your family doctor for help with medications after you do your research on anti-depressants, muscle relaxants, anti-anxiety and anticonvulsant or anti-seizure drugs, sleeping pills, pain killers, etc. It will take trial and error to find the drug or combination or drugs that work best for you and when one muscle relaxant doesn't work, try a different kind again and again. There are many options available for every type of med I mentioned. The 1st anti-d did nothing for me. It took 3 tries before finding the perfect muscle relaxant for me and most pain meds are useless. You just don't give up.

Also, equally or more important, is physical therapy and/or massage therapy. Again here, not all therapists are equally good. It may take trying several before finding thee one. Reduce your stress, stop focusing all your attention on yourself (try to help others any way possible), correct your posture, eat ONLY soft foods or liquids (no cheating), keep your teeth apart at ALL times with tongue resting on the roof of your mouth, lips together or slightly apart, and breathe thru your nose. Be tested for Sleep Apnea. Seriously! Use lots of moist heat interspersed with 15 minutes of ice in a towel placed directly on the jaw joints.

My phone number stays with me for the time being. One, you are a stranger who hasn’t shown to be emotionally stable (understandably) and two, I hate talking on the telephone and even in person sometimes. It’s just not that easy to talk with my jaw as it is. Does this mean I don’t care? It just took over 2 hours for me to write this posting to you with a splint on one hand because of carpal tunnel. I care more than you realize. TMJ is hell and I don’t want anyone suffering with it.

You said you were a fighter, now PROVE it. Prove it to yourself and to others. Stop antagonizing those who want to help you. Become a softer, gentler, kinder you. It does make a difference and will to your TMJ. Also, turn to God. If it were not for God, the Father of Jesus Christ, I would not be here today, nor would I want to be.

God bless you,
Carol