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I originally thought my TMJD experience would make a good YouTube video instead of written blog post but I honestly just can’t with making and editing video content.

So here we are.

I thought I would write up the full story of my temporomandibular joint disorder (TMJD) aka chronic jaw pain for others who may be looking for information/treatment options.

When I was in the thick of it all, I remember going online to look for other people’s stories, just to know I wasn’t alone in my pain. So first thing’s first friend: if you have chronic jaw pain that affects your everyday life, you are not alone.

Here’s my story and everything I’ve learned from the professionals I’ve worked with as well as through digging into the academic literature about TMJD.

Please note: I’m a patient, not a doctor. None of this is meant to be medical advice. If you have questions about your TMJ disorder or other health issues please talk to your doctor or dentist!

This post may contain affiliate links which means I make a small commission if you buy something through the link. I only recommend products and services I use and LOVE and think you’ll love too.

The chronology of events: my experience with chronic jaw pain

I started noticing pain and discomfort in my jaw back in 2013. I went to a dentist who is also a family friend and she gave me a nociceptive trigeminal inhibition splint aka NTI. These are the small bite guards that go just between your front teeth like so:

I was still wearing the retainer my orthodontist had made me years before when I got my braces off, so I incorporated the NTI by sleeping with just that and the top retainer. This setup relieved the pain so I stuck with it for three years.

Then in 2017, I noticed the pain was getting worse, especially on my left side, and the night guard wasn’t really helping anymore.

I struggled with the following symptoms. They waxed and waned: sometimes some were worse than others and some would be relieved and so on.

Pain on the left side when opening my mouth wide or when chewing

Clicking on the right side when chewing

Limited mouth opening

Pain and stiffness in the neck and shoulder on the left side

General inflammation in the mouth, gums, and neck area

Headaches in the evening

Ear popping

Tinnitus (ear ringing)

I went to another dentist – the one my parents see – and he tried conservative treatment with me: massage, heat, NSAIDs, and a taking a muscle relaxer before bed.

I think the massage actually made things worse and the muscle relaxer made me nauseous. My pain suddenly became way worse and I panicked. I went to the orthodontist for a consultation because I couldn’t imagine this problem was unrelated to the way my teeth fit together when I bite down.

The orthodontist more or less said there’s nothing we can do here, you need to see an oral surgeon. They said this problem would not be fixed by moving my teeth around.

So I went to an oral surgeon. He said he couldn’t diagnose me without an MRI, so I got an MRI on the joint. The process with the oral surgeon took MONTHS and during this time I was in pretty intense distress, both physically and emotionally.

I finally got the results back and had a diagnosis after not knowing or understanding what exactly was wrong with me:

I have mild degenerative changes in the left mandibular condyle with anterior disc dislocation without reduction on the open mouth views. There is limited mouth opening. Also borderline partial anterior disc displacement on the right with reduction in the open mouth views.

This video does a good job of explaining what some of that means and how the joint works (with a pretty optimistic ending):

The oral surgeon recommended surgery – an arthroscopy – after seeing the results of the MRI.

Then I was like wait wait wait wait. There has to be another option.

If you’ve done any searching at all, you’ve probably come across dentists in your area offering exclusively TMJD treatment. You know the ones. You see ads for them in local papers, online… I didn’t super duper trust them but was curious to see what they offered and if it could help me.

I went to the Atlanta Center for TMJ for a consultation, which cost me somewhere around $150(!) They were really nice and helpful there, but their treatment program is exorbitant and extremely time and energy consuming. (Spoiler alert: I do NOT recommend seeking this type of treatment!)

From what I can recall, the plan they presented at the consultation was to relax my muscles into their natural position using the TENS machine then create a splint that I would wear 24/7 for a while to realign my jaw into the position it wants to be in regardless of how my teeth actually fit together. Then after many months of this, once we know exactly where my teeth should be, I would get braces to move my teeth into the correct position according to where my jaw wants to be.

And I would have to have the braces for 2-3 years they said.

Without the orthodontic component, the treatment would have cost over $6,000 (!!).

I kept exploring other options.

I had experience going to physical therapy before for a tailbone problem (coccydynia, which apparently often co-presents with TMJD by the way), so I thought maybe I could try that for my jaw. I Google searched and found a physical therapist in Atlanta who specialized in this – Steve Kraus – and set up an appointment. This was when things started looking up.

The physical therapist said we should schedule 4-5 appointments and by then he would be able to tell if he can really help me or not (by whether I progressed or not with therapy). He also recommended I go back to the dentist who had done the conservative treatment to get a proper full-mouth night guard to replace the NTI in the meantime.

By the way, from the very start, this dentist (who I would recommend but he has since retired) had basically said if conservative treatment doesn’t work, we’ll try a new night guard and see if that helps. Instead of following his original treatment plan, I freaked out because a) my pain suddenly got way worse for some reason and b) the night guard seemed really expensive to me at the time. (Which is almost laughable given how much I ended up spending in the end for the oral surgeon appointments/MRI and physical therapy combined.)

I started physical therapy and found it helped take the edge off my symptoms. I also learned SO much by talking with Steve. Therapy basically consisted of Steve teaching me lifestyle changes and stretches to do at home; stretching my neck; hooking me up to a TENS-like machine (I forgot what it’s called) and wrapping my jaw with moist heat while doing jaw stretches; and delivering an electrically-powered local NSAID to the left side of my jaw.

Then I went and got fitted for the new night guard which would cover all of my top teeth and basically ‘fill in the gaps’ of my very open bite along the sides.

The night guard was a game changer. In retrospect, I should have just gotten it after the conservative treatment didn’t work instead of panicking and going to the oral surgeon. However, it is nice to have some sort of diagnosis (from the MRI scan) to understand why oh why I’m in so much pain all the time.

I sleep with the night guard every night now. It has taken my pain waaaay down to a manageable, livable level. I still get achy after chewing foods that are tough or crunchy or if I’m really stressed out or tired (I think the tired happens because my body becomes generally inflamed). But I can finally live my life without thinking about my jaw pain every second of every day.

Understanding the causes of TMJ disorder

TMJD is a disorder with multifactorial etiology, meaning the symptoms are often caused by lots of interrelated things. For most people, there isn’t a single cause and that’s why the condition is so hard to treat. The following factors can contribute to TMJD symptoms:

Malocclusion – this is the fancy term for misalignment of the teeth when you close your jaw. Types of malocclusion include an overbite, open bite, and underbite. Don’t be misled – orthodontic therapy/braces have not been shown to have a preventive or curative effect on TMD (Michelotti & Iodice, 2010). Instead, problems with your bite might be a cofactor in the web of complex causes of your jaw pain.

Bruxism, clenching, and bracing – bruxism refers to grinding. You may grind, clench, or brace your teeth during the day or at night, tiring out the muscles in your face and jaw

Estrogen – TMJD is 1.5-2x more common in women than men (Dworkin et. al, 1990). There is evidence that endogenous hormones (the hormones you naturally have) and exogenous hormones (hormones you take e.g. oral contraceptives) – namely estrogen – play a role in causing the disorder (Michelotti & Iodice, 2010, Patil et. al, 2015)

Orthodontic techniques – if you’ve had poor dental or orthodontic work, you may experience jaw pain later on down the road

Posture – Your jaw basically sits at the top of your spine. Your posture and alignment and the way your head sits on your spine may contribute to jaw pain

Stress/emotions – stress and emotions may lead to grinding or clenching which could contribute to pain. Or they may influence generalized inflammation which may contribute to pain

Injury – Obviously

Arthritis – Arthritis of the joint may contribute to pain

Types of jaw pain

There are two main types of pain you may experience: muscle (myogenous) pain and joint (arthrogenous) pain. Myogenous pain may be more decentralized in the jaw, neck, and head region. It may cause stiffness and limit the opening of your jaw or cause headaches.

Arthrogenous pain is more localized in the jaw joint. It’s sharper and you’ll feel it mostly when you use your jaw. If you have this type of pain, it’s likely related to disc displacement or arthritis of the joint, or both. This article does a good job of explaining the different types of chronic jaw pain and their risk factors.

Note that you can have both myogenous and arthrogenous pain at the same time. I do.

What about disc displacement?

The evidence says disc displacement – whether it’s with or without reduction – is not the cause of TMJD. Many people have disc displacement with or without reduction and don’t experience pain at all (Stegenga, 2000). That said, it is definitely involved in the equation somehow. But understand that putting the disc back into place is not going to fix your problem.

They used to do open jaw surgery to put the discs back into place and they would slip right out of place again. Or they would put them back into place and the patient would still experience pain.

So I recommend not worrying too much about the position of the disc. With this condition, it makes more sense to focus on symptom reduction.

Treatment options for TMJD

There are many options for treatment of TMJ Disorder, from conservative options to more permanent and serious changes like surgery.

NSAIDs, muscle relaxer, heat, home massage

The first thing you should do is try conservative treatment. Your regular dentist should be able to guide you through this and prescribe you muscles relaxers and possibly prescription-strength non-steroidal anti-inflammatories (NSAIDs). I feel lucky in that taking two ibuprofen (aka Advil) or naproxen sodium (aka Aleve) tablets really helps my headaches and jaw pain, but some people need something stronger.

24-hour splint + orthodontia

This is the $6,000 treatment option from the Atlanta Center for TMJ (price not including the orthodontia part). No matter where you live, there are probably similar dentists who specialize in TMJ and offer similar treatment systems. I don’t recommend going this route because you want to avoid making permanent changes to your jaw/teeth as much as you can (see below). Also because it’s WAY too expensive and I’m dubious of any dentist who’s marketing reminds me more of a car dealership than a medical facility (even if it’s for-profit).

Nightguard

There are different types of nightguards: the cheapest option will be the NTI but this should NOT be worn longterm because it can affect your bite. There are nightguards with a smooth exterior that allow your teeth to glide, and nightguards with a fitted exterior that force your teeth into a certain position. I have the former, allowing my teeth to glide and again avoiding making any permanent changes to anything in my mouth or jaw.

TENS, ultrasound, dry needling, radio wave therapy, laser therapy

I don’t know much about these options. Your physical therapist may offer some of these types of treatments and can best explain how they work and if they think they will be able to help you.

Physical therapy

Like I said, I pursued physical therapy to help treat my condition. Physical therapy is an especially good option if increasing your maximal mouth opening is one of your goals. It’s also something you’ll probably be prescribed to help with healing if you end up getting surgery.

Chiropractor

I don’t know much about this option either just because I’ve heard so much pseudo-sciencey stuff about chiropractors. I’ve heard anecdotal tales of people who swear by chiropractic work to help their jaw pain though.

Surgery

There are three main types of jaw surgery you may hear about in relation to TMJ pain:

Arthrocentesis – this is a flushing of the joint with a saline solution without using any visual. It’s the least invasive surgery option and leaves the smallest scar.

Arthroscopy – this is also a flushing of the joint with a saline solution but the surgeon uses a scope to see the joint while they flush. It leaves a small scar near the ear.

Open joint surgery – this is the most serious and risky option. The surgeon will open up the whole area around the joint to operate. Based on what I’ve read, I don’t recommend this type of surgery unless absolutely necessary i.e. you have tumors or your joint is completely locked or something.

Surgery should not be taken lightly and should be a last resort.

Cognitive behavioral therapy (CBT)

One major part of any chronic pain condition is the emotional distress and anxiety it causes. The worst part of this whole saga for me was overcoming the negative thoughts I had playing on loop in my head: I feared I would be in pain literally forever. I was heartbroken to think I would never be able to bite into an apple again or munch on a handful of nuts.

The thing that made me the most upset was thinking I would never be able to make out again. Making out – not like kissing like a peck but properly tongue kissing – was so painful for me and it completely ruined the experience of it.

I felt trapped in my body like I had no control, and the worst part was I felt like it would never end.

I was working with a therapist through Talkspace, an online therapy platform, at the time and she and I started a CBT regime. I tracked my pain levels and symptoms along with my mood while introducing exercise, meditation, and pleasurable activities and tracking those as well.

I recommend working with a professional to track and change any patterns of thoughts, emotions, or behaviors around your TMJD using CBT. Talkspace is a great alternative if you’re looking for something a bit lower cost and convenient compared to traditional talk therapy options (my full Talkspace review here).

Avoid any permanent changes

One major thing I picked up from my reading and researching was that if you can, avoid making any permanent changes to your jaw or teeth while trying to treat your disorder. Most TMJD cases resolve on their own or with conservative treatment (Kurita et. al, 1998). For the others, studies are inconclusive as to which treatment option is more effective than any other.

Each person’s anatomy and behavior/lifestyle is unique to them, and as I’ve said, the condition is multifactorial so there’s no one answer for every person. However, we do know that surgery isn’t any more efficacious in treating TMJD than a removable splint worn at night.

Consider tradeoffs

In the case of the $6,000 treatment from the specialized TMJ dentist, I was looking at a long road of treatment, including years with braces. I reasoned that having braces for years at a time when I’m 30 years old, single, and already look 10 years younger than I actually am would make me pretty miserable. And on top of that, braces would ALSO be painful. So I would be trading one pain for another.

When you think about treatment options, you have to consider that you are trading the pain and symptoms for something else. If that something else is also going to cause distress in some way, it’s a matter of deciding if the tradeoff is worth it to you.

If I could do it all over again…

I think the best thing to do if you’re suffering from chronic jaw pain is to find an experienced general dentist you can trust. They should start you on conservative treatment, then try a nightguard if that doesn’t help, then move forward with any referrals to other specialists from there.

Don’t give up seeking treatment if the symptoms are affecting your everyday life. You’ll have moments of hopelessness so I recommend connecting with others who deal with chronic pain or conditions to talk to. I’ve found they are truly the only ones who really understand.

I’m really glad I didn’t get surgery and that I pursued physical therapy and the full-mouth custom nightguard instead. I’m also glad I did a lot of my own research. It’s hard to find medical professionals you can trust and it’s always best to be your own advocate if you have the resources to educate yourself.

Feel free to reach out with any thoughts/feelings or share your story as well. I’d love to hear from you.

Related:

Pain

The Struggle of Living with Chronic Health Issues

On Falling Apart

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