Dr. Grace | hEDS, pelvic floor
Region: US
Friday 31 July 2026 17:42:20 GMT
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sarahefrench2021 :
a handful? I was told over 9 years
2026-08-20 00:34:20
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Kat𖦹 :
The diagnosis is forever but the baseline isn’t. There are phases where life won’t always be as hard.
2026-07-31 18:09:25
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Svea🐻ིྀ🌸🤍✨ :
I got diagnosed last year and I’m terrified cause my doctor said if ever plan to have children, it could be difficult and I could have severe complications with pregnancy or birth including loosing a child. Is that true for hEDS? Or is that more common in other types? I want a family one day:(
2026-07-31 18:16:31
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Shelby Masich :
how do you ACTUALLY get a formal diagnosis? Who do you see specialty wise? I'm 30 and just finally got a POTS diagnosis. ADHD didn't happen until 25. and my charts have said hypermobility since I was 15, but despite all the other comorbidities I have, they won't give me an heds diagnosis.
2026-08-01 16:10:30
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marisotoam :
I diagnosed myself with TikTok, the. Took all my research to a doctor and he diagnosed me with hEDS, sadly that is the story of many
2026-08-01 02:51:19
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The Grateful Guardian :
Quite frankly, I have found more help from people like you on TikTok than I ever have from the medical community
2026-07-31 22:40:27
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♥️✌🏼🇨🇦Debra Powell🇨🇦✌🏼♥️ :
TikTok is my school 😵💫🥴
2026-07-31 20:38:40
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jordanray547 :
I just went through so many hoops to get ortho to fix my hip and in the end he just goes, "yeah I don't feel comfortable treating you." And now I get to go through it all again with a new ortho practice. 🫠
2026-07-31 23:32:21
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Comrade Nightshade 🥀🔮 :
I'm thankful I found a doctor who also has hEDS and co He's listened and helped SO much
2026-08-01 05:42:50
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IamPumpkinSpice aka Zav :
unfortunately disabled individuals don't have the option to pay out of pocket because we're paying the few bills that we are able to. if you're lucky enough to get disability income it's still not enough to cover paying out of pocket for anything. it's an ableist society and we are suffering for it.
2026-08-02 00:23:38
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EmpressRi :
Yup. My hands hurt but yeah everything you said. I wish I had a way to pay for the therapist who is an hEDS specialist and this DO but of course both cost $$$$
2026-08-01 17:58:25
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Iamdade :
I’m 36 and my care team is me. NHS Scotland has no support for it
2026-07-31 18:09:28
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guavagirl808 :
From childhood, I did really neat "double-jointed" party tricks with my body and was allergic to everything. At 15, the track coach told me I had "weak lungs" due to shortness of breath. At 17, I seen a chiropractor for "swayback". In my 20s, I hemorrhaged giving birth to both babies. Then my uterus fell and pushed my bladder halfway out of my body. At 30, I hemorrhaged having my uterus removed. In my 40s, I was told I had anxiety. At 55, I was told I had chronic fatigue. I can no longer tolerate wheat, onions, garlic, etc. I've had anaphylacis 4x. No doctor has ever had answers... until, at 62, I met a doctor who asked me lots of questions and started educating me on EDS, MCAS, and the trifecta. It's been so helpful in understanding my body!
2026-07-31 21:33:33
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Casey :
And bc ur disabled. It’s extremely hard to maintain a well paying job that does not flair up your disability more! That’s even if you can find a job in this job market
2026-08-01 19:05:50
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Amis :
As a woman in my 60s, I’m just learning about HEDS and wow, I’ve always known I was double jointed, I didn’t start having issues until recently
2026-08-01 01:27:52
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vic |-/ 🦥 :
i’m spending 2k to get an evaluation for eds + other complex conditions in november.. i swear something better come out of this
2026-08-02 06:17:55
1
samhenshaw4 :
35 here had problems with my bladder all my life this year was the first year a doc agreed my hypermobility could be impacting this. waiting for a gyno physio, I don't think I have eds though but have been diagnosed with hypermobility disorder
2026-08-04 09:53:04
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Olivia :
rheumatology and geneticist auto-denied me so i don't even know how to pursue a confirmed diagnosis outside of my pcp without ruling out the other subtypes. so upsetting
2026-08-01 08:12:25
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Ashley C :
If any of you haven't done this already. I strongly recommend doing Myofascial Release Therapy at home and also finding a massage therapist that actually knows how to do this. practice on yourself at home first so you know how it should feel when finding a RMT that actually does good MFR therapy is hard! Also google search MFR therapy and not massage or RMT.
2026-07-31 21:20:31
2
Becca Christine :
I got diagnosed, everything was manageable, I went under general anesthesia last week (been under before and it was too long ago to remember specifics) and I JUST got out of a blood pressure crisis yesterday. My cardiologist ended up calling an ambulance for me because I couldn’t stay conscious enough to make it to my appointment. This is all to say that things can CHANGE sooooo fast and it’s so important to research any and all possible side effects from things (also an especially big middle finger to the male EMS guy who tried to tell me about how he started taking magnesium supplements and he feels way better now and I should ask my doctor about that. My guy. You’re literally sticking me with an IV in an AMBULANCE I’m pretty sure that’s not the biggest issue rn)
2026-08-01 01:19:29
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The Awkward Alpaca :
Also very time consuming and exhausting 😭
2026-07-31 19:23:54
2
KellyBird64 :
Your account and others on TikTok have helped me more with EDS, MACS, POTS, and chronic pain than any doctors have 👍
2026-08-02 16:52:24
1
JealousKitty :
My hEDS specialist is great, but they don't take insurance. And it took me 10 years to get a referral. I'm glad I got in because they aren't accepting new patients anymore.
2026-07-31 23:58:33
1
Glitch :
there's literally no one in the town I live in who are able to diagnose me. I've gone to practically ever doctor in town. Rheumatologist refuses to see me. and yet every single day my condition gets worse to the point of not being able to do almost anything and I've already been refused by disability once. so I'm at a bit of a loss for what to do 😅
2026-08-03 20:08:57
1
tshellen :
I’m currently struggling to get diagnosis for dysautonomia. Took me forever for initial diagnosis (46 years old) - continuing to work on additional diagnoses. I have hEDS, MCAS, Endo, esophageal dysmotility, ADHD. Working on diagnosis for Lipedema, and for POTs symptoms, but my cardiologist doesn’t want to test me unless my symptoms get worse, and my primary care says dysautonomia isn’t a diagnosis. For now I have been adding salt (PC recommendation), and hydrating - which seems to help.
2026-07-31 22:04:47
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