Saturday nights at my new hangout—it’s a real head trip

For the past several weeks, I’ve been spending Saturday nights at my new hangout--“The TMJ Cafe”.   I wish I could say I was joking, but it’s (sadly) a real online site where people suffering with TMJD gather to swap stories, look for answers or even encouragement to keep hanging in there.  The truth is, I’m relying on it more & more too.

The other night, some poor woman wrote this:

I almost wish I had cancer instead.  Cancer can be treated.  It seems that TMD cannot.  I wake up, and begin to have a throbbing pain in my left jaw, traveling up into my head, and sometimes into my inner ear.

My left jaw bone is actually bone on bone, so even washing my face is painful and causes gravel sounds in my left jaw.  I cannot chew, I cannot eat, even drinking out of a straw is sometimes impossible.

I am told I am not getting enough nutrition and try to eat more things like chicken. AHA, if I could.  I have a physician who fortunately prescribes medication to calm me when I start shaking with the pain and the loneliness.

It seems like every other ad on TV is about food, restaurants, etc. I need the remote in my hand all the time because I lose my breath if I watch one.

I am in a black depression.  I can no longer go eat lunch with my friends or have dinner with relatives, or have anyone over for "dinner". Thus, I am losing friends since we don't do things anymore.  Go to a movie?  If only I could do things like that.

I cry every day, shake every day, wish I were dead often.

I have seen many "specialists", but no TMJ experts can be found in Florida. I have been seen by so many dentists I can't count. The problem is that insurance does NOT pay for this, no matter how horrible it is.

This is a daily pain, daily stressor, daily walk down a path to loneliness and no joy in life. What is life worth to me at this point?  Unless I find a miracle, nothing. We need a miracle.

Of course, she got sad emojis from others and promises to include her in their prayers.  Why do I want to read stuff like that?  I don’t know.  It makes me feel a little less alone about my own TMJD, and it helps me convince myself “mine isn’t as bad as hers… right?”   (Sometimes yes, sometimes no.)

At the same time, since last December I’ve met up with friends (Josh & Danielle) exactly once.  I love this pair, but after an hour or so I knew I had to get home.  You can only fake being well for so long.

Speaking of “faking it”, another member posted this meme recently.   Boy, could I relate!

I’m not looking for sympathy from anyone (I feel sorry for myself enough already) but when you’re dealing with something that isn’t apparent to others… it’s tough. 

Anyway, this woman DID get one helpful response.  As I approach 300 days of living with this awful disorder, I’ve read it several times over. 

I understand all of it!  Yes, at least with cancer the suffering ends, one way or another. 

In most cases, it’s not the bones that hurt but the muscles working in ways they’re not designed to, to support an unstable joint. Muscle spasm cause pain, and spastic muscles pinching nerves cause pain. These tight muscles affect the flow of the lymphatic system and cause pressure and pain.

Unfortunately, surgery is not necessarily the answer. Have you tried regular and max dose of anti inflammatories? Heat, Voltarin, Ensure, baby-food? Your aim is to calm the muscles down. If you’re shaking then you’ll have to work extra hard. Acupuncture, physiotherapy, sacral cranial therapy if done right should help over time.

There is no quick or easy fixes for you or the rest of us. Dentists aren’t trained to treat TMJ, neither are doctors...the specialty doesn’t really exist yet. It’s being looked on more now than ever before, but it will take years.

Start with the anti-inflammatories, in case there’s any swelling in the joint. Keep your strength up with meal supplement drinks, or baby food. If you can afford acupuncture or physiotherapy, try it. Get a heating pad or make a rice bag you can heat in the microwave.

If you have an understanding doctor, see if he’ll give you a prescription for Zanaflex. It’s an antispasmodic for your muscles. It will help you sleep. I wish I could tell you there’s a simple fix but there isn’t.  Please hang in there.