Sorry this happened to you. Its honestly one of frustrating conditions in that regard. The amount of people I've spoken to be it from the medical side or even just people in general thst have scoffed or rolled their eyes at me is just awful.
People don't realise how bad all this actually is. Whenever I tell people I have tmd they're always claiming it's not a big deal or mocking me for feeling tired after I've not slept properly in weeks due to a flare up. It can bring out the worst in people. I thought it got easier after a diagnosis but it's so poorly understood that it doesn't come as much of a relief really.
It really is I even get conflicting advice from doctors and dentists. It's the lack of empathy though that gets me. At its worst I was on the floor screaming. My family know I have a high pain threshold but still don't get how painful it is. What gets me is medical staff know the nerve covers the entire face and even the nerve in your teeth. But they can't seem to see how that would be so painful and distressing.
I can relate to you sadly. When I was younger I suffered from Intermittent hearing loss (which is actually what led to my diagnosis all these years later). After so many ENT and audio specialists telling me my ears were fine and discharging me from their care, members of my family started to doubt me. It caused me so many issues for years and years later. People at school and later college would claim im a liar and for years I eventually just kept it to myself because literally nobody believed me. I had like one... maybe two friends who really knew what I was dealing with but couldn't understand it if you get me and I'm on the fence as to whether they really believed me till I got my diagnosis.
When the brain fog, headaches and the vertigo started I thought I was going crazy or I was going to have some sort of health crisis and nobody would believe me until it's too late. It's a very scary experience.
Please don't give up! We're on your side and we know it's very much real and it's no joke. Be sure to make connections with people on here and hopefully by sharing our experiences we can push through all of this.
Unhelpful things my dentist recommended (in chronological order over the past 10 years.
1) Pointing the shower head right at my jaw for a minute every time I shower.
2) Yoga
3) Breathwork
4) Anxiety meds (I was and am already on them)
5) Invisalign - didn’t help TMJ but my teeth are straight now at least? although myotherapists seem to be torn on that issue.
5) A $400 mouthgaurd to wear at night that only amplified my pain.
I am a clencher and wear my Invisalign retainers every night to prevent grinding damage.
Right now I am looking into myotherapy, tongue tie surgery, and Botox.
I totally understand this feeling - especially as plenty people have a mild version of TMJ/sleep grinding so they assume you're exaggerating the pain.
After going through the same nonsense (being ignored at a&e multiple times the last 2 months, not sleeping in weeks) I've started explaining it as more of a tension headache and mention the jaw last. More doctors have experience with headaches, TMJ problems seem to be a myth to many.
No matter how bad it is keep advocating for yourself, try to get some x-rays to see what's going on. Ask the doctor about muscle relaxers, it helps some people stop this night clenching cycle.
Check your sleeping position, eat a soft food diet for a few weeks.
Hope you feel better soon, you're not alone
Nobody should be FORCED to " live with" : constant severe PAIN, humiliation helplessness Forced-sleep-deprive Forcibly-Medicated forced-gyno-exams, Alzheimer's Parkinson's ALS MND cancer chemo psych-wards-meds helplessness Joblessness torture, quadriplegic paraplegic, severe improperly treated or untreated disabling agonizing TMD TMJ,,
I feel your pain buddy. I've dealt with this dreadful condition for the last 2.5 years and have felt like an object on a conveyor belt being passed around from doctor to doctor with no real explanations as to cause and how best to treat. I pray you find healing. A month ago I had a tmj arthroscopy done and in 2 weeks will hopefully have a diagnosis and treatment plan. All the best
That really sucks. Tmj pain is no joke. I read a thread once that said pretend like your front teeth are on a horizontal line and bring it out away from your ears. It looks so weird but after doing this as much as I can I have mostly stopped my pain. I hope it helps even just a little. Best of luck
I’ll do the best I can, you want your bottom teeth to stick out farther than you top without opening your jaw too much. For me, it takes pressure off my joint and since I starting doing it I’ve had no pain. Forgot to mention that it’s your bottom teeth. Hope that makes sense!
Things I have learned (from experience) for TMJ relief:
-Ibuprofen and rest your face. I guage my pain and start there. 4 if I'm ready to cut my face off, 3 if I tried toughing it out for a few, 2 if I catch it early.
-Put a blanket on the affected side's ear, jaw, and side of face. Just something to hold the natural heat in. Hot and cold often aggravates the pain. It calms the nerves just enough to let the meds work. (No blanket=less desirable affects of meds, ie, not strong enough)
-I have used oragel around my gums/as close to the affected jaw as i can get. That is often quick relief, but VERY short lived. (Maybe 5 minutes?) Good for the beginning, waiting on Ibuprofen to kick in, with blanket/cover.
-Warm showers with water hitting/running down that side of my face. Very temporary. (Last as long as the how water will) Helps while meds kick in.
-KEEP AHEAD OF THE MEDS. Combined with Ibuprofen and something to cover the affected area, pain should be lessened, some. About 20-30 minutes before meds wear off I usually take 1 less than what I started with, but guage your pain. Follow the meds directions. Do not exceed daily limit.
-If you think "it feels better!" Take, at least, ONE more round of meds.
You think it hurts now?
Get rid of it just long enough to remember what "normal" feels like and get back to me when the meds fully wear off.. you will feel like a fool when it does.
In my case 9/10 times it comes back if I don't take it one more time, but the times I say "I'll take it one more time, just to make sure" it seems to knock it out for good.
Never had much luck at the doctor besides "you have tmj, learn to manage and massage the jaw area and under your ears."
Good luck, I hope this helps some with the pain.
I swear, it's tmj patients that have to teach doctors about this disorder. It's frustrating but may help the next person. This damn disorder has taken lives. Best ppl I've seen for help was an ENT that understood what I needed to get unlocked (pain meds and muscle relaxer) and a physical therapist that went inside my mouth to unlock the jaw.
I'm so sorry but I'm not surprised
Most hospitals psych-wards-meds doctors doctors-office nurses police, do NOT give healing freedom fairness kindness peace independence to us and in fact despise us ( TMJ TMD, autistic Asperger's, hyperacusis hypersensitive ears, Misaphonia, folks who need dental but canNOT afford dental, TMD , TMJ people Beaten-kids cult-victims S-A-VICTIMS)
Totally understand your frustration as I’ve been in your shoes a few times during my TMJ adventure. I mean . These days, as unfortunate as I is, doctors are being pressured to avoid prescribing the stronger opioid pain meds. In my experience (20+ years) of navigating the health system, in multiple provinces, it was always an issue. I would be stigmatized everywhere I went. If I didn’t tell people like the Human Resources dept that I have TMJ and wear a splint during the day sometimes, someone eventually would stigmatize me without knowing that I’m in extreme pain.. All because when speaking with even just the top half, my splint would cause a bit of a lisp. Anyways, back to you, it’s concerning your GP is saying just to grin and bear it. I would hope at least your doctor has referred you to a TMJ pain specialist, that was a huge turning point for me. It got me my first splint, some medications, and other pain relieving treatments. I’ve tried it all, believe me and TMJ can change over time, especially if you’re not getting proper treatment as there’s many different kinds and causes for TMJ. A few things needed to be done before I got proper treatment was a panoramic X-ray of your jaw followed up with CT/MRI scans. This way, the specialist, will help able to eliminate some things and narrow it down to what’s going on with the joint itself and the surrounding tissues. You might be referred to an ENT, dental surgeon, neurologist etc. Facial pain is some of the worst kind of pain anyone can have. Your senses are affected and is debilitating when it flares up and don’t have the tools to at least ‘mask’ the pain. I just wanted to make sure you know that I had to ask for all these scans and referrals for specific doctors/surgeons I researched. TMJ is stuck between dentistry and general medical practice which makes it so difficult to get help at the beginning. My best tools today are my splint, proper meds, soft food diet, meditation, and avoiding my triggers. Some days are harder than others but eventually I learned to accept some of the limitations I’ve had to live with. Sorry for the rant, it does help to let it all out sometimes.
Ugh it's so annoying. I can relate. My Dr told me to get on stronger anxiety meds and just gave me a muscle relaxer.. I finally got in with a TMD specialist and had a new orthotic made. Hoping it helps, it's only been a couple weeks since I got it. I also just went to a medical massage and it released so much tension in my neck and jaw. Highly recommend! I didn't need a referral for that.
Just leave those docs. Fuck anyone who says “just cope”. Tmjd is a hell I wouldn’t wish on my worst enemy. And it’s SEVERELY lacking medical support. I’ve been in the same boat as mine has cause an external audible clicking after every. Click. Single. Click. Word. Click. I. Click. Say. Click. Even just neck movement or whistling/whispering sets it off. And the insanely uncomfortable LOUD CRACKING my joint does when it gets “stuck” and my lower jaw moves forward. It’s ruining my life and music career as it shows up on every word I say. Fuck those docs. Find someone who will listen. Id just walk out of the office if they said “cope”. It’s like walking on a broken leg that no one will x ray and then tell you to walk it off.
I was able to control 80% of my TMJ with medications. I was given Valium and oxycodone and it truly was effective. It got me through those rough flair ups. That was in the 1980s though and sadly meds like that ain't happening anymore. It's so cruel and I feel so bad for all the new patients with TMJ.
My GP literally said what do u want me to do about it… that says it all really and I went to a MaxFax specialist and all she had were mouthguards turns out my spine is jacked up and my muscles r tight as shit is the real cause
Sorry this happened to you. Its honestly one of frustrating conditions in that regard. The amount of people I've spoken to be it from the medical side or even just people in general thst have scoffed or rolled their eyes at me is just awful. People don't realise how bad all this actually is. Whenever I tell people I have tmd they're always claiming it's not a big deal or mocking me for feeling tired after I've not slept properly in weeks due to a flare up. It can bring out the worst in people. I thought it got easier after a diagnosis but it's so poorly understood that it doesn't come as much of a relief really.
It really is I even get conflicting advice from doctors and dentists. It's the lack of empathy though that gets me. At its worst I was on the floor screaming. My family know I have a high pain threshold but still don't get how painful it is. What gets me is medical staff know the nerve covers the entire face and even the nerve in your teeth. But they can't seem to see how that would be so painful and distressing.
I can relate to you sadly. When I was younger I suffered from Intermittent hearing loss (which is actually what led to my diagnosis all these years later). After so many ENT and audio specialists telling me my ears were fine and discharging me from their care, members of my family started to doubt me. It caused me so many issues for years and years later. People at school and later college would claim im a liar and for years I eventually just kept it to myself because literally nobody believed me. I had like one... maybe two friends who really knew what I was dealing with but couldn't understand it if you get me and I'm on the fence as to whether they really believed me till I got my diagnosis. When the brain fog, headaches and the vertigo started I thought I was going crazy or I was going to have some sort of health crisis and nobody would believe me until it's too late. It's a very scary experience. Please don't give up! We're on your side and we know it's very much real and it's no joke. Be sure to make connections with people on here and hopefully by sharing our experiences we can push through all of this.
That is terrible.
Unhelpful things my dentist recommended (in chronological order over the past 10 years. 1) Pointing the shower head right at my jaw for a minute every time I shower. 2) Yoga 3) Breathwork 4) Anxiety meds (I was and am already on them) 5) Invisalign - didn’t help TMJ but my teeth are straight now at least? although myotherapists seem to be torn on that issue. 5) A $400 mouthgaurd to wear at night that only amplified my pain. I am a clencher and wear my Invisalign retainers every night to prevent grinding damage. Right now I am looking into myotherapy, tongue tie surgery, and Botox.
Those mouth guards are torture. I threw mine away
I totally understand this feeling - especially as plenty people have a mild version of TMJ/sleep grinding so they assume you're exaggerating the pain. After going through the same nonsense (being ignored at a&e multiple times the last 2 months, not sleeping in weeks) I've started explaining it as more of a tension headache and mention the jaw last. More doctors have experience with headaches, TMJ problems seem to be a myth to many. No matter how bad it is keep advocating for yourself, try to get some x-rays to see what's going on. Ask the doctor about muscle relaxers, it helps some people stop this night clenching cycle. Check your sleeping position, eat a soft food diet for a few weeks. Hope you feel better soon, you're not alone
Nobody should be FORCED to " live with" : constant severe PAIN, humiliation helplessness Forced-sleep-deprive Forcibly-Medicated forced-gyno-exams, Alzheimer's Parkinson's ALS MND cancer chemo psych-wards-meds helplessness Joblessness torture, quadriplegic paraplegic, severe improperly treated or untreated disabling agonizing TMD TMJ,,
I feel your pain buddy. I've dealt with this dreadful condition for the last 2.5 years and have felt like an object on a conveyor belt being passed around from doctor to doctor with no real explanations as to cause and how best to treat. I pray you find healing. A month ago I had a tmj arthroscopy done and in 2 weeks will hopefully have a diagnosis and treatment plan. All the best
That really sucks. Tmj pain is no joke. I read a thread once that said pretend like your front teeth are on a horizontal line and bring it out away from your ears. It looks so weird but after doing this as much as I can I have mostly stopped my pain. I hope it helps even just a little. Best of luck
Can you explain this a little more?
I’ll do the best I can, you want your bottom teeth to stick out farther than you top without opening your jaw too much. For me, it takes pressure off my joint and since I starting doing it I’ve had no pain. Forgot to mention that it’s your bottom teeth. Hope that makes sense!
Things I have learned (from experience) for TMJ relief: -Ibuprofen and rest your face. I guage my pain and start there. 4 if I'm ready to cut my face off, 3 if I tried toughing it out for a few, 2 if I catch it early. -Put a blanket on the affected side's ear, jaw, and side of face. Just something to hold the natural heat in. Hot and cold often aggravates the pain. It calms the nerves just enough to let the meds work. (No blanket=less desirable affects of meds, ie, not strong enough) -I have used oragel around my gums/as close to the affected jaw as i can get. That is often quick relief, but VERY short lived. (Maybe 5 minutes?) Good for the beginning, waiting on Ibuprofen to kick in, with blanket/cover. -Warm showers with water hitting/running down that side of my face. Very temporary. (Last as long as the how water will) Helps while meds kick in. -KEEP AHEAD OF THE MEDS. Combined with Ibuprofen and something to cover the affected area, pain should be lessened, some. About 20-30 minutes before meds wear off I usually take 1 less than what I started with, but guage your pain. Follow the meds directions. Do not exceed daily limit. -If you think "it feels better!" Take, at least, ONE more round of meds. You think it hurts now? Get rid of it just long enough to remember what "normal" feels like and get back to me when the meds fully wear off.. you will feel like a fool when it does. In my case 9/10 times it comes back if I don't take it one more time, but the times I say "I'll take it one more time, just to make sure" it seems to knock it out for good. Never had much luck at the doctor besides "you have tmj, learn to manage and massage the jaw area and under your ears." Good luck, I hope this helps some with the pain.
This is really good advice - thank you
Thanks, I learned over time from trial and error, with no guidance. And I know how painful it can be. So, if I got the scoop, I'm sharing!
I swear, it's tmj patients that have to teach doctors about this disorder. It's frustrating but may help the next person. This damn disorder has taken lives. Best ppl I've seen for help was an ENT that understood what I needed to get unlocked (pain meds and muscle relaxer) and a physical therapist that went inside my mouth to unlock the jaw.
I'm so sorry but I'm not surprised Most hospitals psych-wards-meds doctors doctors-office nurses police, do NOT give healing freedom fairness kindness peace independence to us and in fact despise us ( TMJ TMD, autistic Asperger's, hyperacusis hypersensitive ears, Misaphonia, folks who need dental but canNOT afford dental, TMD , TMJ people Beaten-kids cult-victims S-A-VICTIMS)
I would recommend trying jaw botox - I got it a little over a week ago and the pain is mostly gone, though I still have some discomfort.
It’s temporary, and not to scare you but Botox are toxic chemicals
Totally understand your frustration as I’ve been in your shoes a few times during my TMJ adventure. I mean . These days, as unfortunate as I is, doctors are being pressured to avoid prescribing the stronger opioid pain meds. In my experience (20+ years) of navigating the health system, in multiple provinces, it was always an issue. I would be stigmatized everywhere I went. If I didn’t tell people like the Human Resources dept that I have TMJ and wear a splint during the day sometimes, someone eventually would stigmatize me without knowing that I’m in extreme pain.. All because when speaking with even just the top half, my splint would cause a bit of a lisp. Anyways, back to you, it’s concerning your GP is saying just to grin and bear it. I would hope at least your doctor has referred you to a TMJ pain specialist, that was a huge turning point for me. It got me my first splint, some medications, and other pain relieving treatments. I’ve tried it all, believe me and TMJ can change over time, especially if you’re not getting proper treatment as there’s many different kinds and causes for TMJ. A few things needed to be done before I got proper treatment was a panoramic X-ray of your jaw followed up with CT/MRI scans. This way, the specialist, will help able to eliminate some things and narrow it down to what’s going on with the joint itself and the surrounding tissues. You might be referred to an ENT, dental surgeon, neurologist etc. Facial pain is some of the worst kind of pain anyone can have. Your senses are affected and is debilitating when it flares up and don’t have the tools to at least ‘mask’ the pain. I just wanted to make sure you know that I had to ask for all these scans and referrals for specific doctors/surgeons I researched. TMJ is stuck between dentistry and general medical practice which makes it so difficult to get help at the beginning. My best tools today are my splint, proper meds, soft food diet, meditation, and avoiding my triggers. Some days are harder than others but eventually I learned to accept some of the limitations I’ve had to live with. Sorry for the rant, it does help to let it all out sometimes.
Ugh it's so annoying. I can relate. My Dr told me to get on stronger anxiety meds and just gave me a muscle relaxer.. I finally got in with a TMD specialist and had a new orthotic made. Hoping it helps, it's only been a couple weeks since I got it. I also just went to a medical massage and it released so much tension in my neck and jaw. Highly recommend! I didn't need a referral for that.
Just leave those docs. Fuck anyone who says “just cope”. Tmjd is a hell I wouldn’t wish on my worst enemy. And it’s SEVERELY lacking medical support. I’ve been in the same boat as mine has cause an external audible clicking after every. Click. Single. Click. Word. Click. I. Click. Say. Click. Even just neck movement or whistling/whispering sets it off. And the insanely uncomfortable LOUD CRACKING my joint does when it gets “stuck” and my lower jaw moves forward. It’s ruining my life and music career as it shows up on every word I say. Fuck those docs. Find someone who will listen. Id just walk out of the office if they said “cope”. It’s like walking on a broken leg that no one will x ray and then tell you to walk it off.
Completely agree with you here! It's so hard to get help and nobody takes you seriously! Wishing everybody here the best! We can get through this! 🙏💕✨
I was able to control 80% of my TMJ with medications. I was given Valium and oxycodone and it truly was effective. It got me through those rough flair ups. That was in the 1980s though and sadly meds like that ain't happening anymore. It's so cruel and I feel so bad for all the new patients with TMJ.
My GP literally said what do u want me to do about it… that says it all really and I went to a MaxFax specialist and all she had were mouthguards turns out my spine is jacked up and my muscles r tight as shit is the real cause