Temporomandibular joint dysfunction - I am miserable

[Sk8inpancake]

Hi All,

I'm not sure if this is the right place to post this but I've really been struggling to be "happy" over the festive period.

It all started in August 2023 when I had my wisdom tooth removed. It started off with dry socket then a major infection which was misdiagnosed by my dentist. I was never advised to go to hospital until I paid for a private appointment whilst on holiday in the UK. I was admitted and had to have 4 surgeries and 2 trips to ICU to get rid of infection. A total of 3 weeks. As a result I have been suffering from trismus and Temporomandibular joint dysfunction (TMJ) for 4 months since the date of the infection. I can only open my mouth a pinky's width and I am waiting for a further MRI or CT scan to see if the infection has gone. I'm currently on antibiotics for 6 weeks to clear a suspected infection.

I'm starting to get really fed up of not being able to use my jaw properly. On the outside I look well, which I'm sick of people saying. They do not know the daily struggles of not being able to eat and I talk through my teeth due to reduced opening. I just feel defeated and want my life back. I'm really hoping for further interventions as I am currently mourning my old life. I'm on a waiting list to see a psychiatrist for my time in ICU and having counselling in the meantime. I'm just so fed up with life and I don't think my family or friends get it.

Thanks for reading.

[gajh]

I just wanted to reach out to you to tell you that I care.

[Sk8inpancake in reply to gajh]

Thank you. I'm just at the point where I wish I could transport into the future and be 100% better. No one explains to you when you leave hospital how much of a struggle being an outpatient is. Recovery isn't linear I wish it was.

[Wecantry]

I care. I hope you find relief soon. I can't imagine how hard that must be. I've Ivnever had that limited range of motion in my jaw. I have suffered with TMJD since a car accident 35 years ago. I have occasional trismus (locking) crepitus (grinding noise in my jaw. I have periods of time where my teeth won't come together correctly and can not rest. I always feel uncomfortable because my jaw feels uncomfortable, fatigued, and tge muscles tighten and tense. I get terrible headaches. The pain and jaw fatigue is so severe that I don't feel ee like talking, smiling, or doing much of anything. It's It extremely depressing. I had a PT tell me to hold the tip of my tongue to the tissue above my two front teeth. It helps. I had a chiropractor tell me to drop my tongue to the floor of my mouth. I've had bite splints, orthodontics, mouth guards, intraoral physical therapy for the muscles of the jaw. I have an external lump on the left side of my tmj. An ultrasound showed nothing wrong. I saw a new chiropractor who said it's because my jaw is askew, and only the left side is opening and closing. Most people take their jaw for granted. They can't begin to try to understand. I'm hoping that your problem is short term. After they get the infection cleared up hopefully things will get better. As you may already know, when you are able to eat solid food again, stay away from things that are hard and chewy like candy, bagels, raw vegetables, etc. They cause me jaw pain and fatigue. Maybe a night guard would help? A dentist can make one or you can purchase one at a drug store. Muscle relaxers could help. Knowledge is power. Do your own research research online for treatments and doctors. Worse thing here in the US it's not covered by insurance. They think teeth are a luxury. Best wishes. Also prayer and God are my go to.

[Sk8inpancake in reply to Wecantry]

Thank you for your reply.

It is nice to speak to someone who gets it. I've also started grinding one side in my sleep. My left side which is where all my health issues stem from. My infection is in my infratemporal fossa, but keeps refilling. I feel like the antibiotics have helped with swelling, but not with my mouth opening and the pain from trying to get comfortable in bed. I am on anti inflammatories morning and evening which help but wear off during the day despite taking the max dose.

Unfortunately I'm not at the stage where a guard can be fitted my mouth opening is that bad! I had to go through 4 nasal intubations for surgery due to the opening. Dental care also sucks in the UK. There is a shortage of NHS dentists so most have to pay on private dental plans which are unaffordable at the moment. Dentists care more about cosmetics and making money too. The fact that my reduced mouth opening is a res flag and this was missed 4 times shocks me.

I've been doing a lot of research on surgery to help open the joint. I am hoping that the scar tissue that I have is looking ok and I am a good candidate for surgery. I'm fortunate that I'm a "rare" and "interesting" case according to my medical team, this means that I can usually get seen without an A&E trip if I have any issues. The wait between follow ups is just mentally draining though. Constantly wishing someone would contact me and say hey let's get you sorted today. I wish it were that simple.

People really do take their jaw for granted. I expected once discharged in October I'd be fine within a few weeks. Me and partner have postponed the wedding and I'm facing redundancy at work. Hoping for positive news in the new year and some further interventions. The NHS jr drs strikes don't fill me with much confidence in getting sorted soon though!

Thanks for reading and listening. It helps to talk. I'm sorry you are going through this too. I want you to know I get it. I wouldn't wish this on anyone.

[Wecantry in reply to Sk8inpancake]

your condition is far wore than mine. It truly breaks my heart to hear of your suffering. I'm Iso sorry I wasn't thinking when I said about the mouth guard. Did they prescribe a muscle relaxer at night? I wish I knew of something something that could help you. I called insurance to try to find a doctor fixed treats TMJD. Everyone they gave me was an oral surgeon. That is part of their training but they can chose not to treat certain things. Every one I called goes does not treat TMJD. I found a sleep Dr who does but does not take insurance. It's Not covered. I paid out of pocket twice, two different dentists, for a bite splint, then orthodontics. The problem I think i thinis with my neck and the whiplash from what I'm reading. I have a badly herniated Disc from that car accident. I'm in pain every day. People don't understand it. My kidneys and liver are bad from taking too much NSAIDS over the years. I know what it feels like to lay your head on your pillow and just drool because your jaw won't close. Ice might help. I wonder if E-Stim or ultrasonic therapy would help? I don't know what's wrong with this site but it's keeps typing the words twice and i have to back space. It's making it very hard to type. I used to work as a dental assistant and instructor. When you lose lisa tooth, the other teeth will drift into that space and can negatively affect your bite. Teeth won't come together correctly putting fatigue on the muscles and causing pain. I truly hope for the best for you. I'm Isorry you have to postpone your wedding. Illnesses that can't canbe seen on the outside are so frustrating to try to explain to other people. If they can't see it, it's hard for them to believe or imagine what its like.

[Sk8inpancake in reply to Wecantry]

I can't believe they won't treat an actual medical condition on insurance. I'm grateful the NHS. I have no idea how I'd of been able to afford this is the US. I'm hoping to get a letter for a follow up from my consultant surgeon in a few weeks time. I don't want to be left like this for ever. I just feel like progress is so slow.

I noticed yesterday that the right side of my jaw is moving more than my left side. So as you have said above my teeth and my jaw have completely moved. I'm hoping that once the infection has been resolved we can focus on rehab/treatment.

I've been advised by the speech and language therapist that they cannot offer me any physio until the swelling has completely reduced. I think other alternatives are off the cards at the moment too until the pros say so.

I agree illnesses that can't be seen on the outside get forgotten about. I hope that treatment becomes available to you in the US. I can't imagine what I'd of done without the NHS.

[Wecantry in reply to Sk8inpancake]

That's just awful. I hadn't thought about speech pathology therapy. I do have problems speaking at times when my jaw is more flared up. I have a strange awareness of my tongue, like it's in the way or too big for my mouth. When my jaw is worse and opening unevenly, I often bite my tongue when speaking. I imagine they are giving you something for pain. The Arnica is something that can be put under the tongue to dissolve. I have tried sublingual CBD oil also. I didn't feel like it helped much for pain but it helped me sleep well. I live in Ohio. The state just passed recreational marijuana. I would like to try some for pain, but right now nothing is available on the market. There is only the underground, what used to be illegal from drug dealers. I know of no way to get that and am afraid of what it might be laced with. I'm not sure if it's legal to drive to Michigan to purchase it. It's a long drive. I have a terrible L5S1 herniated Disc from that same car accident. I can't sit that long. I have terrible low back pain and sciatica. That car accident was when I was 18 years old. I'm now 54. In my you get years my friends and people didn't understand. Like you, I looked healthy. I don't know if you sleep on your back but it's best for TMJD. It allows the jaw to fall back and rest. I always felt better in the morning and got worse throughout the day. I have noticed that I clench my jaw. I'm not sure whether that's because it doesn't close right or if that's from stress. I don't know what kind of work you do, but a job outside of customer service is better. One where you don't have to talk and smile a lot. I really wish I knew something else that could help you. I just got a prescription for dry eye syndrome. It is a nasal spray anesthetic. It numbs the trigeminal nerve and creates tears. I have not used it yet but I'm hoping it helps with my TMJD because the trigeminal nerve also supplies the jaw. I will let you know. Best wishes. I will be keeping you in my thoughts. You can talk to me anytime.

[Wecantry]

i am looking into alternative medicine for pain. Trying Arnica, curcumin, keep reading and advocating for yourself.