Temporomandibular Joint Disorders

Join the Conversation on
Temporomandibular Joint Disorders
2.9K people
0 stories
474 posts
About Temporomandibular Joint Disorders
Explore Our Newsletters
What's New in Temporomandibular Joint Disorders
See full photo

Dental Care and Chiari Malformation

I always dreaded the dentist. See, I don't tolerate novicaine well and for me, it usually requires many shots to numb me up. Even then, there are side effects. Rise in blood pressure from anesthesia, anxiety, jitters, pain, aches. The dentist hasn't even been to see me since trying to numb me up, other than I can hear them yell from another room - "Is she numb yet?" So by now I can't feel most of my face, I'm excessively drooling, I've lost my time slot for care, and I have the jitters (all of which I am desperately trying to control). Stressed and more anxious. I dread the dentist.

Two years ago I had a cracked molar which needed extraction and an implant. I was stressed about it, my pain level had been in total B!tch gear for over a year putting it off, and I was trying to conjure ways to avoid that day. Well, one week after this horrible experience of oral jackhammering, I developed a chronic case of vertigo. At the three month mark I just couldn't take it anymore and my PCP sent me for my first Brain MRI. "You have Chiari Malformation, do you know what that is?" "No, I'm not familiar with that, should I be?" And my journey has begun...

Dental context: I have known for 10+ years that I also suffer from TMJ and so I frequently ask the dental staff for breaks or to use a bite block to take pressure off of my jaw muscles. Only that day, because of the procedure and it being the back molar, I had to keep my mouth open further and longer AND my head was way back. This lasted for approximately 4 hours. My current team of doctors believe this was the 'perfect storm' to reveal my CMI condition. Now please understand I have suffered for more than 20 years with odd symptoms that no doctor was able to define. This one day was my curse and blessing. I finally was able to hold on to a symptom long enough to acquire a positive test result, and finally put a name to the condition(s) I have suffered with for so long.

Be your own advocate, speak up for yourself. Think about the cause and effect of actions. Little did I think that laying back in a chair so I could have my teeth cleaned and repaired would result in the scariest news of my life. I now remind the dentist/hygenist each and every time what my challenges are and that if I should need to speak up, there is no negotiating - I must take a break.

Do you have a similar experience? Please share your thoughts and ways in which you cope with dental examinations/procedures.

#ChiariMalformation #ArnoldChiariMalformation #ChronicPain #EhlersDanlosSyndrome #TemporomandibularJointDisorders


I feel like curling into a ball and crying #Fibromyalgia #TemporomandibularJointDisorders #chronicmigraine

It hurts and I’m so tired. I have to dog sit but the dogs are killing me. It is making me so miserable. I want to leave but the dogs want to be near me at all times.

I have nothing for relief. The dogs want to be all over me. I can’t take it. I don’t get irritated like this when I work. This is the first time I have felt like this.

I feel like crying and just laying down and locking myself away from them. I want to just not be in pain. I want to not be here. I hate how I can’t have anything without pain anymore. I just hate everything right now.

7 reactions 1 comment

No diagnosis yet

New here. I have most of the fibromyalgia symptoms but I don't experience pain with light touch.

Still I am hypersensitive to light touch which causes immediate spasms and cramping in various muscles. Specifically my jaw/ear area and back.

I also don't believe I have hyperalgesia.

What I do have is terrible TMJ pains. chronic deep muscle pain all over my body. Feeling of exhaustion all the time. Waking up every few hours when I try to sleep. Not waking up refreshed. Mostly waking up with severe stiffness and aches. Having a hard time to do much of anything physically within a 8 hour timespan after waking up. (I don't have sleep apnea).

Hypersensitive to select muffled sounds. Hypersensitive to visual triggers. IE when someone is standing fairly close to me and engaging me.

I am just wondering if there are people who were diagnosed with fibromyalgia but who don't have hyperalgesia and where allodynia does not give pain signals.

11 reactions 8 comments

Appointments coming

#Doctors #appointments

Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.

My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.

3 reactions 3 comments

Hi! I'm new here...first post!
I have fibromyalgia and tmj. I came to realise recently that I've been in denial for the last 20 odd years about my fibro and have been constantly masking most of my symptoms. I've burnt myself out countless times over the years.
I'm currently recovering from a tmj jaw op- the severity and difficulty of my recovery has finally opened my eyes to how much I pretend I'm ok and that I really can't maintain this much longer. I'm only 40 but I think I need to slow down and it's frightening to be honest. I'm just so sick and tired of being sick and tired. #Fibromyalgia #TemporomandibularJointDisorders #sickandtired #denial #Masking

5 reactions 4 comments

So what’s wrong with me?

I’m asked that question often because I look younger for my age and I’m very active and functional. How did everything develop? I’ve always had cold hands and toes since I was about 5 years old. I never worried about it much honestly until I found out it was #RaynaudsPhenomenon in 2017. This is the same year I was diagnosed with #Fibromyalgia & #MajorDepressiveDisorder .

What it feels like? For me, it feels like the soreness you feel after a workout and never recovering. Now, anything thing I do tell people is that I got Mono back in 2010. First time I ever got severely sick to where I even lost weight. Now it’s 2023, I have an overactive immune system and a autoimmune that they can’t find. However, they were about to do a DNA(DS) AB, High Avidity blood test because my ANA is normal and my other blood test are normal. They suspect #Lupus but they do know I have #ChronicFatigue .

*My spoons are usually 1-2 tasks that’s would last 4-5 hours until I’m fatigued*

…and I’m also diagnosed with #CarpalTunnelSyndrome .

On top of all that, I have other undiagnosed issues including #TemporomandibularJointDisorders in my jaw (nevous of dentist) and #GeneralizedAnxietyDisorder (functional and social)

Another thing, I have hypermobility in some area, such as my fingers & my knees. I was also told I had a deformity in my neck to where my neck is straighter compared to other people (I never knew what that mean). This was done after an MRI.

Two reasons I was given that all these symptoms came in my late 20’s and now in my 30’s. I was told it all started when I got sick in 2010 making my immune system go haywire (definitely possible) but also genetics (possible if it’s from my mother). That would be something I’m unable to figure out. Again, I look fine and very functional but I have an equal amount of bad days.

5 reactions 2 comments
See full photo

Give this a try…

Dealing with a Sjögren’s flare causing gland swelling, TMJ and ear fullness. My mother bought me this ice neck patch. I freeze it. And instead of putting it on the back of my neck, I use it for my neck, under jaw, laying straps behind my ears. And it has given me major relief.

2 reactions

Do you EDSers suffer with TMJ dysfunction too? Please share your story if so.

I have always been aware of the popping in my jaw that occurs when I open it a certain way and my clenched teeth shooting a sharp pain through my head upon waking, but just recently put all the pieces of the puzzle together on how this is affecting me in so many more ways. I have been told that I have atypical trigeminal neuralgia, numerous forms of tendinitis, even brachial plexus neuropathy. This of course is in addition to my underlying hypermobility. Those are just a few of the many ailments that I have been blessed with. Prior to the recent onset of the extreme jaw/ear pain and facial discomfort, my most disturbing issue was serious neck stiffness/pain - felt like someone was pushing my head forward while they were standing behind me. It makes my job extremely difficult to do, as I am glued to my computer for eight hours a day, five days a week. These jaw/facial symptoms recently flared in a way I had never previously experienced. So, after doing just a small amount of TMJ dysfunction research on the internet, I found out that this affects over 70% of people with Ehlers Danlos syndrome. Even to the point that some are actually diagnosed with EDS-hypermobility type because they have chronic jaw pain and associated symptoms. I’m posting this because I’m interested in all of the symptoms that you have if you suffer from this horrible condition. Please share. Thanks in advance!

9 reactions 5 comments

Other pain decreases during migraine cycles?

Has anyone else had similar experiences? During a migraine cycle (consecutive weeks when I have 1+ migraines each week), I notice my joint pain (Hypermobility) and even my TMJ pain ‘improves’, both in the long-term and directly before a migraine. The pain then goes back to normal after a migraine/after a migraine cycle. This is slightly bewildering me at the moment - have NO idea why this is and was wondering whether anyone had any similar experiences?? Thank you so much!! Sending hugs to everyone from Australia!
#Hypermobility #EhlersDanlosSyndrome #TemporomandibularJointDisorders #ChronicIllness #ChronicFatigue #HEDS #hypermobileehlers-DanlosSyndrome(hEDS)

1 reaction 10 comments

I’m new here!

Hi, my name is Hannah. I’m from Canberra, Australia and have just recently been diagnosed with BPD. I also have chronic migraine, TMJ disorder, anxiety and depression. The BPD diagnosis is very recent and I’m looking to gain knowledge,

#MightyTogether #Anxiety #BorderlinePersonalityDisorder #Depression #Migraine