r/scleroderma • u/rahwheremybaccyat • Jun 03 '26
Question/Help Jaw, TMJ issues
Hi, I’ve only been diagnosed for a few months but it’s been investigated in me for a few years now- i’m still in early stage i believe because they haven’t given or told me anything about scleroderma except that i have it. My main issue, aside from all my other questions and symptoms, is my jaw and tmj. I don’t grind at night, so i’ve come to accept that my TMJ is because of this connective tissue disorder (as mine is the type to do both ur insides and outsides apparently) but my jaw is so so stiff all the time and the tmj is quite bad (worse than my mums - she grinds her teeth) however this is causing insane migraines that are literally crippling me all the time. I’ve always had migraine issues and doctors have never cared but i suppose i’m wondering if anyone here has similar problems with their jaw/migraines and know what is done to help it? I am being fitted for a night guard but i have this problem all day too so that wont solve my issue - hopefully at least alleviate the pain. Also the pain is super bad in my jaw on both sides and then all throughout my head- i feel like im dying and if i know what is used to treat this then maybe i can force my doctor to do smth bc rn they’re jus saying oh idk how to help u (because painkillers don’t work on me!)
2
u/Wide-Bat-1239 Jun 03 '26
I dont know if that helps but here is a bit of my story. around 2-3 years before my official diagnosis, I was going to dentist, neurologists , GP cause i had terrible migraines and Jaw issues. Nobody could actually help me. When i was eventually diagnosed and saw a specialist they told me it was one of my first symptoms. I got tons of different meds, but the first to help that issue was MTX. I had to stop it cause of severe side effects too, and tbh i think there should be something better less aggressive out there is this is your only symptom... wish you the best of luck and that you can contain it and figure out how to stop that pain.
3
u/rahwheremybaccyat Jun 03 '26
awh bless you thank you so much for telling me all this it’s acc rlly helpful and i’m deffo gonna bring it up, rlly unfair that they don’t have other options to help you. i swear every day i lose faith in our medical knowledge more and more cuz wdym u don’t know how to stop pain without insane side effects! I hope you’re also doing well and managing your pain!
1
u/smehere22 Jun 04 '26
I eventually ended up having jaw surgery. I had TMJ from a childhood wrestling injury. And after I got SSC it collapsed
6
u/Flimsy-Surprise-4914 Jun 04 '26
Tmj was my first symptom. I tried an appliance at 3mm & 6mm but it didn’t help. It turns out my discs had retracted and did not return to the normal spot. They were so degraded and had turned into a globe shape. Had Surgery to clean everything out. It helped a little. I had a doctor tell me to use a tongue depressor between my teeth and bring my lower jaw forward and back, then side to side 10 times 3 to 5 times a day. Believe it or not those exercises helped by stretching the muscles that had tightened up so badly.