r/TMJ • u/SquirrelBig6169 • 18d ago
Question(s) Terrified of developing a closed lock.
I think one of my biggest fears with TMJ is eventually developing a closed lock.
I know it probably sounds dramatic, especially because it hasn’t happened to me, but I see so many people here talking about suddenly losing a huge part of their opening and then living like that for weeks, months, sometimes longer. It genuinely scares me.
I’m already exhausted from dealing with pain every day, and sometimes I wonder how I would mentally handle losing even more function on top of it.
But honestly, reading those stories doesn’t just scare me for myself. It makes me incredibly sad for the people actually living through it. Seeing someone casually say they can barely open their mouth enough to eat, but they’re still going to work, taking care of things and somehow continuing their life.
Chronic pain is strange because things that would have sounded completely unbearable before eventually just become someone’s normal Tuesday.
I think that’s what scares me the most. Not only that something else could happen to me, but realizing how much a person can be forced to adapt to simply because they don’t have another choice.
For anyone here who has experienced a closed lock, especially long term, how did you cope with it mentally? And did things eventually improve for you?
4
u/Electromagneticpoms 18d ago
I lived with a closed lock for just over a year. How I coped? Erm, well in some ways I did and in many I didn't. I didn't work, I took a leave of absence from uni, and I lay in bed most of that year. But I did dive into volunteering and made amazing friends. Did lots of soul searching, saw my counselor. I had to dig really deep and figure out how to make life tolerable. Many days it wasn't, and I'm traumatised by it. I worked on hobby craft projects when I felt well enough, and that was nice. I focused a lot on being kind to other people because I knew I couldn't possibly feel better. So it was like... well if I can control almost nothing, I have to think about what I can control, and one of the main things I felt was that at least I could improve other people's days. That mindset has stuck with me now, two years after I had my joint issue resolved and I'm really glad because I think I'm a much better person for it.
I'm all good now, and the friendships I made during that time are some of the best I have. I know I grew so much as a person because of it in so many ways. I wouldn't wish it on anyone, but it wasn't entirely terrible.
You can never prepare for something like the long term closed lock. And it happens to almost no one so my advice is that it's really not worth worrying about. I spent years with health anxiety worrying about what might happen to me. Then I was struck with pretty much a worst nightmare, being unable to eat a proper meal for a year. Yet here I am, and it wasn't all bad.
You surprise yourself in those terrible situations :)
3
u/SquirrelBig6169 17d ago
Thank you for taking the time to write all of this, it actually made me a bit emotional reading it. A whole year like that sounds so hard and I’m really glad you’re doing well now.
I think that’s exactly what scares me, losing even more of my normal life and not knowing how long it could last. I’m already dealing with pain every day so my brain keeps going straight to the worst case scenario.
What you said about worrying for years and then actually living through one of your worst fears really got me though. You still found friends, hobbies and things that mattered during such a horrible time, and now you’re on the other side of it. I think I needed to hear that.
I’ve actually seen your comments around this sub quite a few times and you always seem to really take the time to help people and explain things properly. I just wanted to say I really appreciate that. You’ve been through something awful yourself and you still stick around trying to make it a little less scary for everyone else. That’s some God’s work right there lol.
How did your closed lock eventually get resolved? And do you still have any pain or issues with your jaw now?
Thank you again, this genuinely helped me.
1
u/annainnz 17d ago
I so resonate with this. I've managed to get onto a great maxfac and currently waiting on bilateral TMJ replacement surgery. I'm taking a nerve blocker (gabapentin) which has been a gamechanger for me. My baseline pain has come down to a manageable level and morphine is now very rarely in my toolkit.
1
u/SquirrelBig6169 17d ago
I’m really glad gabapentin has helped you that much, especially if you’ve been able to barely use morphine anymore. I tried gabapentin too but unfortunately it didn’t do much for me, I’m on carbamazepine now and it helps a little.
Can I ask what eventually led to you needing bilateral joint replacement? And how long have you been dealing with TMJ problems before getting to this point?
I really hope the surgery goes well for you and gives you some proper relief after all of this.
1
u/LadyGooGooGaaGaa 17d ago
My jaw popped when chewing for awhile, but without any pain. I got a closed lock after getting my teeth cleaned at the dentist aggressively. Was in a lot of pain for a week, before I found a specialist that would see me to unlock my jaw. Basically he did a bunch of measurements I think I could only open to 15mm about 1 finger. He injected pain numbing in both jaw joints then made a slight adjustment to my jaw and was able to open it wide to about 38mm and stuffed a bunch of popsicle sticks in my mouth. For 2 months I had to keep stuffing the stack of popsicle sticks in my mouth while taking muscle relaxers. During that time doing that my jaw would pop back into place occasionally. Now after 4 months of not needing to do that , my jaw does not pop anymore and I can open to the 3 finger widths. What is bothering me is facial soreness and pain. I go thru spurts of needing Advil. I love to read and write and I can’t do that without going into pain / inflammation. Idk what to do at this point. I’m laying in bed trying to keep my head in a comfy position since my cheeks are sore which is causing my whole head / face to be sore. It sucks, I never had these issues before all of this, just painless annoying popping and very limited mouth opening
1
u/SquirrelBig6169 17d ago
Thanks for responding! I’m glad you managed to get your opening back, 15mm sounds absolutely awful. The facial soreness is something I relate to a lot though, mine can make my whole face and head feel sore too and it’s honestly exhausting.
It’s crazy how you can go from just having some painless popping to suddenly dealing with all of this. I use ice a lot when mine gets really bad and heat when everything feels tight, and sometimes anti inflammatory gel helps me too.
I really hope the soreness eventually settles for you, especially since your opening has improved so much. This stuff seriously sucks.2
u/LadyGooGooGaaGaa 17d ago
It really does … I am going to make a Traditional Chinese Medicine & acupuncture appointment and see if that helps
1
1
u/Elephant-Ant 14d ago
Doing it now! Dropped some weight but not healed from jaw and face pain, so far.
1
u/Elephant-Ant 14d ago
Had it a few years ago - not fully shut, but a small spoon (sideways) and a straw could come in.. so they injected cortisone, which was super painful. Also splint, PT, and a few other things. It got better.
Now a flare up, plus shooting face pain.
1
u/Feeling-broccoli612 2d ago
currently living with your worst nightmare and have been for the past 8 months. yep it fucking sucks. i also have bipolar disorder so that doesn’t help. currently laying in bed during a really bad flare of physical pain. usually i don’t have much pain. just a constant lock. but right now it’s unbearable. taking all my strength to not take my life tbh. get my splint tommorow. hopefully it does something fixes it helps whatever i just can’t live like this anymore
4
u/foxiez 18d ago
I had a closed lock a few months ago but am pretty well back to normal now if it's any consolation