Dr. Grace | hEDS, pelvic floor
Region: US
Thursday 17 September 2026 00:53:46 GMT
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mae :
Hypermobile teeth sucked!! Had braces for 4.5yrs, wore my retainer daily for 10 years, but my bottom teeth still would shift & cause so much aching. (Ended up needing 2 separate gum graftings in that spot). Finally went back to my dentist & my heds DX and realized it’s best to let my teeth shift back how they want some to find some stability. I’d love to know if anyone else has had similar issues. It’s so weird having that type of ache and pain, and instability, yet nothing that can really be done for it
2026-09-19 13:22:19
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Mara :
can we also talk about eating anything not soft just shredding your mouth to ribbons
2026-09-17 01:44:18
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April • Dietitian :
I get lectured about my gums every single dental visit. No cavities at age 50, but my gums are all receding bad. I’ve been accused of brushing too hard, etc. 🙄
2026-09-19 12:21:33
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Elizabeth Zimmerman :
It takes four shots to freeze my mouth before dental procedures.
2026-09-17 01:08:54
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CreepyLimon :
I'm tired of knowing more than my doctors and having to argue because they didn't continue upgrading their knowledge
2026-09-19 11:42:07
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Lindz lens & the tiny terriers :
I get really bad mouth ulcers
2026-09-17 02:32:39
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Lea :
I ate a toasted sandwich 4 days ago and I’m still having pain where the toasted bread part scratched up my palette ☹️
2026-09-17 04:53:46
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Jacquie 🇨🇦 :
Yep. Definitely have the crowding and grinding of my teeth. And sleep apnea. And because of the grinding of my teeth, I have always had more cavities. Oh and I have TMJ. (And migraines!)
2026-09-19 13:31:17
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TeekTalks :
For me, the biggest impact is the lack of effectiveness traditional numbing agents have combined with the increased sensitivity to every sensation. A lot of the time, the numbing needle just flat out doesn't work. I have endured traumatic experiences at the dentist and now have severe dental anxiety. It is the #1 biggest concern and stressor in my life 😩
2026-09-17 14:24:31
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Caitr Gaitr :
Gumline recession! I've had it since I was in about 3rd grade. Then I get exposed root, which is painful in itself, but also prone to caries bc no enamel. I have very "deep" teeth and grind, so lots of fracturing. It sucks because I am always shamed by the dentist but I take such careful care of my mouth! [Teary eyed]
2026-09-17 03:20:16
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Alyssa | Labor & Delivery RN :
I’ve felt my teeth move so much my whole life
2026-09-17 01:39:50
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Aunty Pinky :
I have temporo mandibular joint disorder after a dentist opened my mouth too wide during a wisdom tooth extraction and dislocated my jaw. I was 17 when this happened and I am now 51. My jaw gets stiff and painful if I chew gum or talk too much, it randomly locks and can get stuck slightly open or misaligned if I even yawn wrong.
2026-09-18 14:32:19
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Leia the Siberian Cat Princess :
And what do we do about the grinding? 🥲
2026-09-17 01:02:15
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Elleon :
Funnily enough, every time I went to the dentist and got my teeth cleaned my gums would bleed and they would always tell me "if you actually glossed everyday this wouldn't happen"...I did in fact floss every day and they just don't believe me 🤷♀️
2026-09-17 14:03:39
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Mindy Brown :
I went to a new dentist. I told the x-ray tech don’t worry I know I have a bunch of extra teeth. Every dentist tells me that. During my exam, my new dentist was training someone and mentioned you see all these extra teeth she has that’s a sign of Ehlers-Danlos. And then proceeded on. I had never heard of that disease. Went home, researched and asked for a referral from my PCP. I have since been diagnosed and all of my weird issues that other doctors couldn’t explain now makes so much sense!! I’m so grateful for that dentist for saying that out loud and now I have some sort of explanation for things that happened to my body.
2026-09-18 00:05:43
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Beanie :
My dentist spoke to me like shit for a few years and was so derivative about my teeth and gums even though I know I brush enough. Got diagnosed with EDS, told him and his reply was “oh that makes sense” no apology for the way he’s spoke to me for the last few years.
2026-09-17 07:20:28
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yomomma_l44❤️ :
Telling my new dentist this he didn’t believe me till it took him 2 hours to give me enough numbing meds. Then when I was done he asked me again what I had told him. Got a call the next week him saying that he’s been reading everything he can about EDS. Been there 6 years now!
2026-09-17 03:40:49
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UnmotivatedAuthor :
And dentists never believe us when we tell them local anaesthetic doesn’t work as well on us. It’s so frustrating PLEASE JUST BELIEVE US
2026-09-18 01:31:46
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Jennifer Gordy :
I wonder if this is a thing I never even grew my wisdom teeth how many people with EDS never had wisdom teeth
2026-09-17 02:29:06
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blulyt :
it would be great if you could extend this conversation to include the abnormal response to dental anesthesia
2026-09-17 17:27:19
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Selena :
I have to be careful when I yawn. my jaw pops/sublaxes if I open my mouth too wide. and numbing medications for dental work wears off super fast. i've had dentist tell me I was lying and they continued drilling my teeth when I told them I was starting to feel it. it's taken my many years to trust another dentist.
2026-09-17 15:15:26
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that_bendy_babe :
My lower jaw is deviated to the left by 4mm. Seems like a little but it is really not and causes so many problems with my TMJs. Not to mention, the skin in my mouth is so fragile, a piece of toast or anything even slightly crunchy tears up my mouth 🙃
2026-09-17 01:44:29
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sonnyann333 :
My teeth are terrible. And because I am 53 and just learned about HEDS in the last 5 years (and just got officially dx a month ago), I had no idea that was the cause of my intolerance to lidocaine. The problem is finding dentists that are familiar with HEDS and know how to work with us. Are there databases that exist for this? If not, there should be.... someone needs to get on that
2026-09-17 11:12:55
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user4089945260886 :
You are describing all my dental issues. It took a smart hygienist to bring HEDs to my attention at age 50. I went to the UCLA TMJ Clinic in my 30’s when my teeth were cracked and my jaw was in pain. No one mentioned it. I have a high, narrow palate, gum recession in middle school, and have spent sooooooooooo much money on dental bills.
2026-09-17 05:32:20
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Mistress Dante :
Found out the hard way that my molar roots are literally spiralled when I had to have a dentist crack *one* into 4 parts and pull em out like screws. His tools were also full adult size and I have an almost child-size mouth, so it took 4 and a half hours and I felt so bad for his arms 😭
2026-09-17 05:28:51
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