Dr. Grace | hEDS, pelvic floor
Region: US
Thursday 01 October 2026 01:00:11 GMT
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nicole⚔️ :
does anyone else get hella trapped air? it’s hard for me to swallow (multiple swallows per bite) and then i always have to burp excessively after i eat or drink
2026-10-01 02:33:03
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The.OG.Shieldmaiden :
wait my trachea is not supposed to move back and forth ???
2026-10-02 04:01:43
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Mel-mah :
omg i been "playing" with my trachea since I was a kid!! hah
2026-10-01 01:14:47
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Periwinkle :
How do we go about investigating the sleep apnea?
2026-10-01 05:19:44
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H Jones :
So if I have strong suspicions of hypermobility… who/what pathway of care should I pursue for diagnosis & treatment? I have to go to my primary first, but after that I have no idea if PT or ortho is best, or how to advocate for quality care… 😬
2026-10-01 04:02:47
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novakane538 :
Wait. The treachea thing isn’t normal? What else can cause it?
2026-10-01 04:30:56
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Rebecca Macella :
My PT recommended me to get tested due to how far past normal my shoulders were going during strength exercises!
2026-10-02 02:51:11
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✨Michelle✨ :
WAIT YES I THOUGHT I WAS CRAZY
2026-10-02 00:36:37
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SillyCowMelanie :
i cant bend my joints as I once could due to pain now but I semi dislocate multiple joints. have gastro issues, suspected gastro paresis thay isnt always there hence staying suspected l, sleep apnea, instability in joints and pain and suspected MCAS
2026-10-01 22:44:34
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Christine :
Thank you for this. The Mayo Clinic told me there’s no way it could be eds because I’m not super bendy. At 50, it’s very painful to prove, how flexible my joints can be. I have all the other underlying issues.
2026-10-01 09:17:02
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Holly Rempel :
My throat does that. It's not all the time but it's common enough. Is it an actual flag?
2026-10-01 01:26:53
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Jennifer Eastman Han :
Where can I find this checklist? How do you recommend finding a qualified doctor/ naturopath/homopathic, etc. I will go to anyone that can help me.
2026-10-01 02:14:39
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Jen with 1 N :
Ha! That happens to me too! And I was FINALLY diagnosed at 48! And I’ve had all these symptoms my ENTIRE life!
2026-10-01 03:31:03
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Jﾶέ 𓋼𓍊 :
😩 that happens to me all the time
2026-10-01 17:13:13
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JJ ♿🌈 :
as a kid I used to absently 'play' with my hyoid making it pop back and in, not knowing that was what I was doing.
2026-10-02 02:02:16
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descentatbest :
Recently diagnosed and I’ve still not found anyone else who yawns and sometimes the jaw stays open and it really hurts under your chin like something is poking out until you physically put your mouth together but I’m assuming I’m dislocating something?
2026-10-01 02:07:36
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JBILLY90 :
I straight up told the ppl at physical therapy ppl im hypermobile and have EDS.
2026-10-01 23:38:41
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TB :
when I swallow my throat clicks is the eds [Tears of joy]
2026-10-01 05:34:04
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Kirby (confulu and delulu) :
My throat clicks/crunches when I swallow sometimes
2026-10-01 06:01:35
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🌝 Carrie W Writes 🌝 :
I just had a random physio at my GP do the opposite. Have been dx with hypermobility my entire life; significant joint instability, really typical stuff. Got a hEDS dx after lining up the co-morbidities with physio specialist and GP. See a random physio at GP, and he suddenly decided years of physios, specialists, docs WERE WRONG and dismissed all the "breadcrumbing" and also entire medical history. Absolutely bizarre and infuriating
2026-10-01 07:39:05
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jwgjw2267 :
So what type provider will test and treat for this?
2026-10-01 20:34:35
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✨ Kali ✨ 🦁♌️ :
Every day I hear another EDS symptom that just thought were part of my charm. Today that was sleep apnea. Had a sleep study at 15 bc of all my sleep issues. The doc said that I had it but basically that I was too young to do anything about it. I’m 95% sure I’m EDS and a little more sure daily. Thank you for making these videos and spreading awareness.
2026-10-01 05:27:33
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Lotta :
The thing is, I don’t know what’s normal and what parts of my body are supposed to do what (or more likely what they are not supposed to be doing). I am not talking about obvious things, like lungs are there to breathe etc. but like something pops out of its place? Happens ig. As long as it’s not super painful my brain categorizes it as normal. I got a hard time localizing things (especially after it has passed. Same with emotions) and on top of that, even if something is definitely not normal there’s a high probability that I won’t say anything. I am NOT diagnosed with anything (except a hyperkyphosis) and am just informing myself about possible causes. I am quite sure I am hypermobile though
2026-10-01 17:11:23
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No :
I wish I could see you. I so desperately need help. I am at the end of every ounce of coping skill any human could ever have, have been for a couple yrs now. Thought about leaving this place many times now due to the pain. I honestly don’t understand how the doctors dislike people going on for years and years on and in chronic debilitating pain. Not to mention, I am widowed and have no choice, but you just keep pushing and pushing because someone has to earn a living and pay the bills take care of everything. My life is nothing but a never-ending nightmare of pain and Dr denials even though brain MRI finally getting my issues had to be coming from one of two places, my spine or a hypermobility disorder. I have hyper androgynous pots and MCAs but for some reason, she just wants to fight me on the HEDS. It’s been years. Your spine doesn’t cost six trigger fingers, a trigger thumb, several tendons in your shoulders to 100% rupture, a hiatal and umbilical hernia, lazy eye, esophagus, full of scar tissue, digestion that doesn’t work well, bilateral carpal tunnel, five bilateral knee scope, feet that can no longer walk without shoes, giving birth precipitously six times, three kids sunny side up, uterine abruption, Pitocen after birth due to bleeding issues,TKR that resulted in a blood clot andPE, never ending lower leg pain, thumbs shaped like backwards, C’s and the thumb joint so deteriorated that my thumbs are folded down under my hands, thumbs, and Risk bent backwards all the time, bones in my butt cheeks, tailbone, and hips constantly hurt, severe spondylosis in my neck which makes my head shake up and down and gives migraines for up to two weeks, tremors, tachycardia, adrenaline dumps, exhaustion, brain fog. But my doctor wants to argue about all of it and does not want to give me a diagnosis or help me get one. She just keeps sending me away and it God awful pain. My third child just got his results from his two week heart monitor and they are not good. I also have curvature of the spine with a leg length discrepancy, degenerative disc disease, and herniated disc. But 100% guarantee you this lower leg pain does not come from my spine. My bones feel like somebod
2026-10-01 20:24:10
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lisae1416 :
I wish there were more Drs that were willing to listen where I am… I’m almost 100% convinced I have hEDS and MCAS but no one will do an official screening or test for it. Everything extra bendy ✅ gut issues ✅ chronic hives ✅ pain in almost all my joints ✅ ughhhh.
2026-10-01 21:24:40
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