Living With Lock Jaw: My Life With Degenerative TMJD

Earlier this year, I was handed yet another diagnosis to add to my ever-growing list. I was told I have severe degenerative jaw disease, or TMJD as it’s sometimes called. Essentially, my jaw joints are deteriorating, and the end result is something called “lockjaw.” At this point, I can only open my mouth about one finger width. One finger.

That’s it.

I used to joke about how much I could talk (and laugh), but now even forming words can bring tears to my eyes. Talking hurts. Laughing hurts. Smiling hurts. Eating hurts. Even yawning – something so natural, something you don’t think twice about, is now something I dread.

And while living with pain is nothing new to me (my body and I have been at war for many years thanks to my other diagnoses), this particular pain is a whole different level of soul-destroying.

When Every Movement Hurts

It’s hard to describe what jaw pain feels like when it’s constant. Imagine your face being hit with a hammer, or that deep ache that comes after having a tooth pulled, except it never goes away. It’s always there, sitting heavy in the joints just below your ears, radiating through your temples, down your neck, and across your face.

On a bad day, it feels like my whole face has been smashed in. The pain wraps around like a vice, and I can’t think about anything else. On a “good” day, it’s a dull, throbbing ache that flares if I move my mouth too much, which is ironic, because I’m someone who loves to talk, to laugh, to connect with people.

But now, I have to pick my moments.

Do I talk through the pain? Or do I stay quiet and save my jaw for eating later?
It’s a strange thing to have to weigh up every single day, to choose between conversation and nourishment.

My “Magic Cream” (and the Battle Not to Blind Myself)

My MaxFax (maxillofacial) oral surgeon prescribed me capsicum cream, essentially a prescription cream made from chilli extract. Yes, chilli! Apparently, it works by confusing the pain signals in your nerves, so after a while, the brain sort of gives up and stops recognising the pain.

And honestly? It’s magic. I call it my magic cream, because when I rub it into the joints on both sides of my jaw, it gives me a kind of blessed relief that painkillers alone just can’t achieve. For those few hours, it dulls the ache enough for me to function.

But there’s a catch.

Rubbing and having chilli cream on your face without getting it anywhere near your eyes is, well… impossible. No matter how careful I am, how many times I wash my hands, try not to touch my afce, somehow, at some point, I end up with a burning eye.

There have been moments where I’ve been half-crying, half-laughing (which, of course, makes it worse) because I’ve accidentally brushed near my eye. My face feels like it’s on fire, but the relief it gives my jaw makes it worth it every single time.

If you’ve ever been in that level of pain, you’ll know exactly what I mean. You’ll try anything that brings relief, no matter how ridiculous it sounds or how much it stings.

Surgery and Waiting

Earlier this year, I had a small operation to flush out my jaw joints and try to stretch my mouth a bit wider. It was supposed to help loosen things up and give me a bit more movement. Unfortunately, it didn’t work.

The MRI does show that the damage is severe. And, so my MaxFax Oral surgeon referred me to a TMDJ specialist surgeon because, according to him, the only remaining option is open jaw surgery, but highly likely a total jaw replacement surgery.

Yes, you read that right, a total jaw replacement (tjr).

I honestly never even knew that was a thing. Apparently, it’s rare, and there are only five surgeons in the entire UK who do it. Each replacement joint is custom-made in the US, designed specifically for the patient. The thought of having metal joints in my face feels surreal, but at this point, it’s also a small flicker of hope.

I’ve been waiting eight months for my appointment with the specialist. Eight months of living with this relentless pain, of not knowing what the next step will be, and of feeling like my world has shrunk a little more.

Waiting feels endless when you’re in pain. Every month that passes feels like a year.

The Fibromyalgia Connection

Interestingly (and frustratingly), TMJD problems are common for people with Fibromyalgia. It’s one of those comorbid things that seem to go hand-in-hand. My body is a bit of a jigsaw puzzle made up of diagnoses that overlap and complicate each other.

Fibromyalgia already brings its own set of challenges, widespread pain, fatigue, brain fog, and everything in between. Add a degenerating jaw joint into the mix, and it’s like my body decided it needed to up the ante. Oh, not forgetting I also have degenerative spinal foramina stenosis.

Sometimes, I feel like I’m collecting diagnoses like they’re Pokemon cards. Each new one comes with a mix of validation (because finally there’s a name for what’s happening) and heartbreak (because it’s something else I’ll have to live with forever).

The Mental Toll

The physical pain is brutal, but the emotional side of it can be just as heavy. When something as simple as smiling becomes painful, it starts to chip away at your spirit. I’ve caught myself avoiding mirrors because I don’t want to see the exhaustion on my own face, or the way my jaw now hangs slightly differently.

There’s a kind of grief that comes with chronic illness, grief for the person you used to be, for the things you used to do without thinking. I used to love going out for dinner, chatting for hours, laughing until my sides hurt. Now, eating in public feels like a marathon, and even soft foods can feel like a battle.

Sometimes, I feel like I’ve lost part of who I am. But other times, I remind myself that living with pain doesn’t make me weak. It makes me strong.

Finding Small Joys

Despite everything, I still try to find joy where I can. Maybe it’s a cup of matcha tea sipped slowly. Maybe it’s a quiet evening watching TV where I don’t have to talk, or the comfort of knowing that my “magic cream” is there if I need it.

I’ve also found a strange sort of connection through writing about it. When I share my story, even the raw, ugly parts, people reach out and say, “Me too.” There’s comfort in that. Chronic pain can be incredibly isolating, but it helps to know we’re not alone.

What Comes Next

Right now, I’m still waiting for that specialist appointment. I have no idea what the outcome will be, whether surgery will even be possible, or what recovery would look like if it is. The unknown is scary, but I’m trying to hold onto the hope that there’s still a way forward.

Maybe one day, I’ll be able to open my mouth wider than a single finger. Maybe I’ll be able to laugh without flinching, or eat a proper meal without pain. Or, even looking forward to being able to eat a French baguette sandwich.

Until then, I’ll keep doing what I’ve always done: adapting, surviving, and finding little moments of magic where I can, even if it comes in the form of a fiery cream that nearly blinds me once a week.

Because sometimes, you just have to laugh (gently) at the absurdity of it all.

Living with pain isn’t new to me, but this journey with my jaw has tested me in ways I didn’t expect. It’s a reminder that our bodies are fragile, unpredictable, and sometimes infuriating. But it’s also a reminder of resilience. Of finding ways to keep going, even when every movement hurts.

So if you’re reading this and you’re dealing with your own version of constant pain, whether it’s Fibromyalgia, TMJD, or anything else, just know you’re not alone. We might be battered and tired and living on a cocktail of medications and chilli cream, but we’re still here. Still fighting. Still finding our small, stubborn ways to smile, even when it hurts.

 About me

I am a married mother of four children, in my mid-40s. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.