does anyone have TMJ?

[ElroyM]

I have been having chronic migraines for a year now - around the same time I started having a flare. My lupus indicators went from 100 - 350 and have stayed high.

i have had a really bad three day migraine and have been in bed recovering. Lots of time to research!!

It starts with an ear infection, eyes red and swollen for a few days, the migraine with aura start, get a feeling of internal shaking, then I feel nauseous and have bad stomach pains . My neck has been sore for days and now finally my jaw is very sore and I can’t chew.

I googled this and I can’t believe that all these symptoms can be linked - and it could be TMJ?!

TMJ is 60% more likely with people with lupus.

Would love to hear from anyone who has TMJ. What did you do to make it better?

Thank you

[Turquoise-1]

Hi ElroyM,I’ve suffered badly with TMJ in the past & still do from time to time; For me the symptoms I get are clicking, painful TMJ joint & difficulty opening mouth.

I am a former (qualified) Dental Nurse & TMJ is quite common.

A dentist is the best person to consult regarding this painful problem & also to confirm if that’s what it is. They could make you a bite raising (BRA) appliance to be worn at night or at certain times during the day, (obviously not when eating though!). A BRA fits over your lower teeth & to help to keep your top & bottom teeth slightly apart, this takes the pressure of the Temporomandibular Joint (TMJ) & prevents a person from grinding their teeth whilst sleeping. Dentist can refer severe cases to Oral Surgery, but surgery is is last option after all other options have been thoroughly tested.

Cut food up into small pieces & avoid overstretching the TMJ by opening mouth too wide, eg biting into an apple.

Headaches & earache can result from painful TMJ but I’ve never heard of the other symptoms you mention in connection with it; perhaps you have other issues going on or it’s just the weirdness of Lupus!?

All the best to you.

[posthinking01]

Hi yes I had TMJ issues and it was agonising as it dislocated. I also have Lupus but together with Lupus which can happen was my thyroid which was running low - please get your thyroid checked as I actually used another issue with my TMJ this year to realise my thyroid was playing up again and it's needs were not being met.

[sarahalice]

Morning.Yes I get it ever so often, usually when I'm in a flare. It hurts like hell and you can't even eat. Before I knew what it was I'd go to the dentist because i was sure it was my teeth, they would xray say nothing is wrong even though I was holding back tears. It can last for a few hrs to a few days then disappear like it was never there.

Hope you feel better soon x

[ShannonB in reply to sarahalice]

This is exactly like mine. There and horrible and then gone! And then back! I have been sure it's been a tooth infection and have been multiple times to the dentist and nothing wrong there. So frustrating and painful.

[sarahalice in reply to ShannonB]

It's so weird isn't it. At the time its the most painful thing ever, when it's gone it's like it never happened! X

[ShannonB]

Yes! I have lupus and get TMJ with my flares quite often. I've been referred to the hospital for it but waiting for an appt. Looks like Turquoise is sharing all the advice I've been given too. I don't really have solutions but just to say you're not alone and I'm sorry. It's a bit excruciating.

[soul22]

Hi

Ouch sorry hear how unwell you are,sending hugs prayers.

Yes my dentist diagnosed TMJ when I started struggling open my mouth headaches pain across lower jaw.

Consistently doesn't upset tummy limited to face neck head,ears.

I was made a tooth guard that sleep in to stop grinding teeth in sleep to give my jaw a good rest.

It helps 90% stress agrevates TMJ,

Tmj is a common add on condition to fibromyalgia, rheumatoid arthritis.

I suffer sle ,lupus ,fibromyalgia, rheumatoid arthritis .

Gentle massaging jaw helps and head,they check re make teeth guard as when needed.

Pain relief some have anti inflammatory treatment such as ibuprofen but I can't tolerate them.

Take care mel

[CecilyParsley]

Hi Elroy yes I suffer with TMJ issues sporadically. I get headaches, earache, toothache and cannot open my mouth fully Chewing is painful so I tend to stick to soft or liquid food when I get it. My GP asked me to move my jaw from side to side and I just couldn’t. I have no warning that it is starting and massaging the jaw and temples gently eases the pain. I hope you find something that works for you .

[MorIlse]

Hello,About 10 years before diagnosed with Undifferentiated connective tissue disease (UCTD) systemic autoimmune disease, I had episodes of TMJ and migraines after a inner ear tumor was removed. I started taking glucosamine and it helped a lot, got rid of the migraines and TMJ is much better now, I just get reminded when I go to the dentist because it makes that grinding sound when asked to open and close my jaw so you might want to try taking it and see if it improves.

[HowNowWhatNow]

Hi

Have you had a diagnosis of TMJ?

Just thought I’d check because sometimes - not always - Dr Google can take us down what we think is a very nice and scenic route but we will never know what the other route looks like, without a medical diagnosis… to mix metaphors, madly.

I just wonder (not seeing it in your post) if anyone has ruled out / treated you for ear or sinus infections, when you have had this, or done a throat swab for strep or done any other diagnostics like this, re: upper respiratory infections or anything else?

[ElroyM]

Hi Georgeor,I haven’t had a diagnosis. You’re right Dr Google has taken me to this possibility of TMJ.

I don’t know what it is tbh.

I’m still in the episode 1 week later - the migraine symptoms are the worse. I’m clutching at straws really - desperate for some answers.

My consultant said the migraines are separate from my lupus but I don’t think they are - everything leads by to my lupus really.

Thanks so much for all your helpful replies - really useful to get your perspective.

Thank you 🙏🏽

[Allydee]

I had a really painful jaw last year and it took months to recover. I’ve been left with a clicking jaw and I’m off for a specialist X-ray on Friday - the dentist will then refer me to the hospital. It started during a bad lupus flare but thankfully most issues have settled since starting azathioprine- would like to get it sorted !! A tooth guard hasn’t made much difference. I can vouch for a daith piercing for migraines tho - they don’t work for everyone but I have had significantly fewer migraines since I had it done a year ago,

[MusicalFurbaby]

Hi ElroyM, I have terrible TMJ with lupus, so you are not alone!

Mine started a few years ago after I bit into an apple and couldn’t eat for a week afterwards. I now have chronic TMJ pain, which also gives me headaches, face pain, neck pain and pain while eating. I get the locking and clicking/popping sounds too.

Scans were problematic as one of my TMJs is so dislocated it actually can’t be captured on scans. But we think that one TMJ is permanently dislocated and the other dislocates and reconnects every time I open and shut my mouth. They believe there are congenital defects—my jaw never developed properly—and rheumatoid factors—my bones are corroding from the inside out.

Treatment will ultimately be surgery to replace both joints, but in the meantime, I’m wearing an occlusal splint and getting specialist physio on the jaw to help reduce pain. My TMJ specialist has suggested we might consider botox and arthroscopy at some stage, before we look at surgery.

TMJ can certainly give you lots of pain and other symptoms, not to mention affecting your quality of life. I am finding the splint helpful—I wear it at night and it’s a specially designed one that stops me grinding my teeth at night. Since I’ve been wearing it, the pain has reduced overall, the killer headaches have backed off and my face is no longer throbbing every day. I still get pain and find it hard to eat, but it’s better than it was. The specialist physio seems to be helping as well (normal massage and chiro did nothing). I’m seeing a physio at a specialist TMJ clinic and he really seems to know how to work with the jaw and neck in harmony. He also gave me daily physio exercises to do myself with my jaw.

Hope that helps. Best thing is to see a TMJ specialist if you can, then you’ll get tailored care instead of generic. Good luck! 🌈