What to do about the pain...

TMJ issues can cause a whole slew of problems: vertigo, headaches, worn teeth, should/neck/face pain, ringing in ears, clicking/popping sounds, etc. 

Everyone wants a quick fix and to never think about it again, and for some people that is possible.  The very first thing I would suggest is finding a doctor that treats TMJ.  If you go to your dentist, make sure he/she is knowledgeable about jaw disorders.  Not all dentists are well versed in TMJ. 

Here are a few suggestions that may or may not help with the pain.  Of course, always do what your doctors suggest and what is best for YOUR body.  What works for some people could potentially do more harm to someone else…so just be careful!

1)   Take over the counter medications-ibuprofen and naproxen is best.  Both of these; however, give me a terrible stomachache, so I take Excedrin every two to four hours.  This helps take the edge off the pain.

2)   Moist heat or cold packs-Apply an icepack to the side of your face for ten minutes.  Or, if your doctor told you to, heat a pack and wrap a moist washcloth around it and place it on your jaw.  When I was first diagnosed, I was told to use warm moist heat.  That coupled with muscle relaxers and steroids would usually help pop my jaw back into place within a few days.  Now, I use ice. 

      This holds the ice pack in place-you can purchase at Face Caddy.  They come in different designs.  My doctor gave me something plane but similar to this after surgery and I love it.

                        This is a heat/cold pack that you can purchase at Walmart, CVS, etc.  I own this and used it for moist heat.  

3)   Limit extreme jaw movements-don’t yawn, excessively chew, chew gum, sing, yell, etc.  I am extremely careful with this.  Though sometimes I feel my jaw getting tighter than usual and I give it a few good yawns and I hear a crack and some of the tension is relieved.  Everyone’s body is different, and you must know your body.

4)   Keep your teeth slightly apart when relaxing.

5)   Learn relaxation techniques-we tend to carry stress in our face.

6)   Anti-depressants-doctors can prescribe anti-depressants and/or anti-anxiety pills that can help a person to relax.

7)   Muscle relaxers and or pain pills-I joke with my friends that I have a lifetime supply of muscle relaxers in my medicine cabinet.  These have helped me out a lot throughout the years.  Now I’m at a point where they don’t really help with pain but they do help relax the muscle around my eye so it doesn’t twitch as much.  I’m allergic to pain killers, so I don’t use them.  I imagine that would be very helpful.

8)   A splint or a night guard-these are plastic mouthpieces that fit over your upper teeth so your upper and lower teeth don’t touch.  A night guard you wear while you sleep and a splint you wear all the time.  I never wore a splint; I did wear a night guard for many years.  In fact, I still have mine even though I do not need to wear it. 

                                                                     This is a night guard

  

9)   Braces-I have worn braces two times.  The second time I wore braces in hopes of healing my jaw problems.  I didn’t work but I now have beautiful teeth.  My friend was put in braces for the same reason and has not had a problem with her jaw since (and yes I’m jealous)!

10)   Botox-there has been a lot of controversy about Botox and whether or not it helps TMJ.  I tried Botox injections because after a surgery the muscle on the left side of my face was tight.  It was difficult to open my mouth because the muscle felt like a tight rubber band holding my mouth shut.  It costs about $600 (insurance doesn’t pay) and the doctor gave me the injections.  It really did help that particular muscle.  It did not relieve any pain or do anything else. 

11)   Acupuncture- some people have successfully used acupuncture to help with the tension and pain.  I tried this alternative medicine once.  I felt like a pincushion and it wasn’t for me, but I do believe that acupuncture is beneficial for certain things.

12)    Massages-I have heard of special facial massages that can help alleviate pain.

13)     Exercise-if your doctor gives you special jaw exercises, do them.  They do help.

14)      Diet-soft or liquid diet.  I know this isn’t fun, but it is necessary.

15)      A good pillow

Everyone is different and our bodies react differently to different therapies.  My sister’s jaw sometimes gets tight and she will open real wide, and it will pop back into place.  Anyone standing around her can hear it popping.  It sounds painful, yet it’s not. 

At this point in my TMJ journey, not much helps the pain.  I take Excedrin to take the edge off and if I am having a terrible day I will take muscle relaxers, but nothing is going to make it go away.  I am hopeful that the total joint replacement will heal me!

If anyone has any suggestions, please feel free to tell me!  I always enjoy learning new things!

9 things not to say to people with TMJ/TMD chronic pain

I have several friends and family members in my life who suffer from chronic pain.  There is nothing worse than waking up knowing that this is the best your pain level will be.

For me, I am always in pain.  Everyday it feels as though I have a constant mild to moderate migraine.  I consider that to be a great day.  However, sometimes it gets worse for whatever reason, perhaps I woke up and have slept funny, or maybe I smiled too much the prior day.  There are days my head/face hurt so bad I don’t want to get out of bed.  It hurts to breath, walk (the vibrations go throughout your entire body), touch my face/head, I can’t put my hair up, etc.  This pain is unbearable.  I would cry, but that would make it 1000 times worse.

I hate being the friend that can’t go jet skiing because it’ll hurt my face or is on a strange diet because food can hurt my jaw.  When we go out to eat, there are times my friends/family must try things just to see how soft they really are.  I hate being the one who hasn’t been heeled yet.  It’s embarrassing.  I know it shouldn’t be, but it just is.  I can’t explain it.

Here are a couple things to keep in mind when talking to someone with chronic pain:

1) Chances are the pain will not magically go away.  I’ve heard people say, “Give it time” and it just infuriates me.  Some people have prayed, had surgery, went to a specialist, and miraculously they are healed.  For the rest of us, time is not going to help.
2) My sister, brother, cousin, whomever, has ______________________(in my case it’s TMJ) and they do ________________ to help it.  The amount of people I know who grind or clench their teeth, or their jaw pops is great.  TMJ is not a disorder; it literally stands for Temporomandibular Joint.  Having problems occur with that joint or other parts of the jaw is not uncommon.  However, everyone is different.
3) “I wish I was on your diet; I’d be skinny”- No you don’t.  No one wants to be on a soft or liquid diet for an extended amount of time (in my case years).  Yes, I’m skinny, and I am often too thin for my height.  I try to eat very fattening foods such as peanut butter, and I drink wine (not every day).   I try to gain weight but it’s difficult.
4) “My jaw pops and my dentist/doctor told me that I don’t need surgery and that surgery can make it worse.”  When someone shares that tidbit of information with me I always tell him or her that they received great news.  What else can I say?  
5) “How are you feeling?  How’s your jaw?”  Sometimes I don’t want to talk about it and so I lie.  My answer is either, “it’s great” or “it’s good.”  The truth is that it is never good, it always hurts, and that I am tired of it.  It’s nice to know that friends/family care, but if I ever tell you it’s good I’m lying.
6) “You look great or you don’t look like anything is wrong”-I might be dressed nice, but everyone who knows me knows that my left eye twitches and droops at times and I am very self-conscious.  When I do not want to take a selfie or be in a picture, that is the reason.  I know that people are being nice, and I appreciate it, but forcing me to take pictures when I don’t want to can be devastating and leave me in tears.  This may appear to be no big deal, but to me it is huge.  I use to love my smile, and I can see how my face has changed.  If I am not feeling well, taking pictures makes me very insecure and upset.  I can easily avoid this by being the cameraperson or sitting the picture out.

       The last selfie in Miami before I refused to take anymore-as you can see from the look on my face, I'm over it.  

7) “Things could be worse”-yes, this is true.  However, this is a wildly unfair statement.  It’s great to put your life in perspective, but people are still allowed to hurt, feel, and try without feeling guilty that people have it worse than they do.
8) “It’s all in your head”-In my case this is literally true. Lol.  However, chronic pain is not something you can ignore.  Anyone who suffers with chronic pain will try, but they can’t ignore it for long.
9) “It’ll get better”-How do you know this?  Though this is meant to make someone feel better, it just doesn’t.  No one knows the future.  It may get better or it might not, no one knows.  As much as I am the eternal optimist, I have come to terms with the fact I may always hurt.

 I love and appreciate the fact that my friends and family care about me.  I know that they ask questions and share any tidbit of information they find out about jaw issues with me because they care.  In fact, some of the information they have shared has truly been helpful and much appreciated.  I know that they think of me and pray for me often.  I am truly blessed in that regards.  I am lucky that they are in my life!

Some of my list was compiled from what other people have shared with me about chronic pain, and some of it is from my own experience.  No matter what, I am optimistic that one day I will no longer be in pain and that I will resume a some-what normal life.  I will never lose hope.

I’ve decided, what’s next?

What happens after one decides to have bilateral Total Joint Replacement?

Well I felt instant relief, with a mixture of terror.  I know it is a huge step, and it has the potential to positively alter my life.  On the other hand, I have read the horror stories and do not want to do anything to make my jaw worse. 

I anxiously waited for my paperwork to arrive via mail.  I wasn’t quite expecting anything like the packet I received but this is a major surgery and so the office is very thorough. 

                                         Tons & Tons of paperwork to read through!!!!!

The paperwork gave a detailed outline of what steps needed to be done and what order.  First, I needed to set up a CT scan and visit an allergist to get tested for metal allergies.  I set up both appointments as quickly as possible.

The step-by-step process that leads to surgery 

My insurance company denied my CT scan until a peer review was done.  A peer review is when the surgeon must schedule an appointment with the insurance company.  Interviews are scheduled between 9am-6pm.  This might seem like there is ample time to get these done, but there isn’t.  Doctors are busy with surgeries and patients, and must carve out at least twenty minutes per peer review.  This is a hassle for them, and nerve-wracking for the patient.  I re-scheduled my CT scan six times by the time my doctor was able to call and get it approved.  I might have waited awhile, but thankfully it was approved.  Within a week, I went in and had my scan!

After my CT, the nurse brought me in the back and showed me all of the images on my disc.  It was pretty cool and I took a picture of one of the images.

I also went and had my allergy test.  The allergist was extremely nice, and he only patch tested me for metals.  Normally he would test me for everything, but didn’t want me to pay my high deductible.  Two days after getting my patch, I went back in and he checked and I have no allergies.  I could have chosen to pay for a much more thorough blood test; however, I was pretty sure I wasn’t allergic to any type of metal.

This is what a patch test looks like-this stays on for 2-3 days.  You can't get it wet or allow your body to sweat.

My next doctors appointment isn’t until September 3^rd.  That is when I will deliver my CT disc, sign oodles of paperwork, and pick a surgery date. 

Should I have TJR or not??????

Before I made my next appointment, I decided to do research and discuss my options with family and friends.  At this point I had only read negative reviews about Total Joint Replacement (TJR).  I wasn’t very optimistic about the future of my jaw, and didn’t know how it would affect my teaching career. 

Luckily for me, that’s when things began to change.  I found an online youtube video diary.  This diary starts when Shae is 17 years old, and follows her through her TJR surgery.  She updates the diary at least once a year.  This was the first optimist piece of information I have heard about this surgery.  This is her very first video , but this will not only explain the surgery, but also show you what the recovery will be like.

https://www.youtube.com/watch?v=10b6mzicud4

I then found the Facebook support group, TMJ Hope.  This support group gives a lot of information about TMJ.  It explains the good, the bad, and the ugly of this disorder.

After I found those resources, I was more open to the idea of TJR surgery, but wanted to know what my friends & family thought.

                                             Karen and I at her daughter's bday party!

My friend Karen had some very funny, yet off the wall questions that she felt were valid and needed answered:

1)   Will you ever be able to eat a hard shell taco?

2)   Will you be able to go on roller coasters?

3)   Will you be able to go on jet skis?

4)   Will you be able to snorkel?

My other friends/family just wanted to know if this surgery would increase the quality of my life?  If the answer is yes, they thought I should go for it.

Armed with many questions, I drove to Miami to get the results of my bite impressions. 

My model looked very similar to this :)

They brought out the model, and gave me the good news.  I would not need braces for the 

third time in my life as long as I continued to wear my retainers.  That was the best news I had received about my jaw in awhile!

I have condylar resorption, which is when one or both mandibular condyles break down the bone resorption process.  This is nine times more likely to be present in females, and usually occurs during the teenage years.  What does this big, and rather strange sounding word mean to me?  My jaw is messed up and causing a great deal of pain.

I told my doctor that I had read that this surgery doesn’t always help with pain, and he believes that in my case it will.  I am the perfect candidate for this surgery because my only problem is the actual joints.  He also believes that I will only miss 2-3 weeks of work. 

At the end of the consultation, I decided to begin the TJR process.  I said yes to the surgery, and really I said yes to hope for a brighter and less painful future.  I have heard the recovery for this surgery is horrendous, but as much as I hate clichés, ‘no pain no gain.’