hypermobile type

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hypermobile type
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    I was diagnosed hEDS at the end of November. Can you share your tips & management advice? It would be highly appreciated #EhlersDanlosSyndrome

    I have been housebound/bedbound for years with unrelenting pain & spontaneous subluxations, dislocations of my joints. The worst are my shoulders and hips as even laying down causes dislocations. I have widespread instability & bone deformaties. When I try to walk my hip curves, subluxate & knees twist inwards painfully, outside leg bone on right leg moves & knocks as I try to use my feet normally. I cant stand for no more than 10 mins on very rare "better" days before my pain around the si joint, back & heels starts flaring severely making me fall with faitgue & balance issues, along with skin rashes & blood vessels burning as my blood pressure shoots along with my heartbeat, causing dizziness, sweating & muscular fatigue. My doctors are not helping me currently regarding joint issues. I use heat, ice often & medical cannabis has been my saving grace as all pain pharmaceutical medications have caused GI complications. #HypermobileType #ChronicIllnessEDS #BenignHypermobilityJointSyndrome


    Does anyone go long periods between subluxations and then just have them randomly pop up? The game of “hmm… what caused this?” each day is exhausting!

    #EhlersDanlosSyndrome #Hypermobility #HypermobileType #tired


    Blessing or curse?

    Trying to decide if being bendy is a blessing or a curse this winter.....
    Today it saved me from a head injury, but in return I injured my wrist. If I weren’t bendy I wouldn’t have been able to finish catching myself when I was slipping on ice and would’ve ended with both a head and wrist injury.
    Granted it appears my case is mild, but any input from others? I also only seem to have internal comorbidities at this time that aren’t very severe.

    #EhlersDanlosSyndrome #HypermobileType #bendybunch #Winter

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    Share a photo of younger you + a symptom you didn’t realize was related to EDS until you got older!

    Hello Bendy crew! 👋 Childhood was a bit strange for me — mostly because my body didn’t work the same way others’ bodies did (and I wasn’t diagnosed until my mid-20s, so I didn’t have a reason as to why).

    You too? Well the good news is, you’re not alone! 🤝 I thought maybe we could share some old photos of ourselves (if you’re comfortable) and different things we didn’t realize were related to EDS until we were older as a way to bridge the gap of understanding in the here and now.📍Here’s mine:

    I used to pee my pants a lot as a kid/young adult, causing a lot of embarrassment and shame. Not until I was older did I meet someone else with EDS who told me, “Oh yes, that’s common in EDS patients.” I was utterly mind blown to find this out (although I’m not entirely sure how much research there is around this) — mostly because it made me feel less shame for something I couldn’t really control.

    Your turn! Share a photo 📸 by creating a new post in The Bendy Bunch group, or tell me your experience in the comments below. 💬👇

    #EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #Hypermobility

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    Welcome, new Bendy Bunch members! 👋

    Hello, everyone! I thought I’d take a moment to introduce myself to anyone who’s new to The Bendy Bunch (and I hope you’ll introduce yourself, too!).

    I’m Haley, and this is my huskymut Bella. (She actually looks just like this emoji lol: 🐕) I was diagnosed with EDS almost two years ago, but grew up constantly in and out of the hospital and seeing orthopedic surgeons all the time.

    I hope this group is a safe, nonjudgmental space to chat with others who “get it” — the constant pain, lack of understanding from others, the countless sublaxations, comorbid diseases and more. I’ve definitely had some awesome “OMG ME TOO” moments here already.

    📌 Fun fact about me: I first went to college for fine arts! I then switched to a major to advertising and psychology at a different school. And, because of my health, it took me 7 years to finally graduate!

    Your turn! 🤝 Introduce yourself in the comments below or by creating a new post in the group if you’d like to share a photo! Tell me:
    • Your name or nickname (if you’re comfortable sharing)
    • When you were diagnosed with EDS (or if you’re still looking for a diagnosis... because I know that can take a while!)
    • A fun fact about yourself (there are most definitely no right or wrong answers for this one!)

    #EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #MightyTogether

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    Does the weather impact your joint pain?

    I told my last physical therapist that my joint pain is often worse when it's (a) about to rain/raining or (b) hot and humid. ☔️ He responded, "only old people say that." (This was my reaction to his comment: 🤦🏼‍♀️) Mind you, he was a "healthy" individual who does not live with chronic illness/rare disease.

    It has been thunderstorming AND super hot where I'm at in the world — so as you can imagine, I'm currently in pain. 😑

    👉 What's your experience? What kind of weather makes your joint pain worse or better?

    (This is my way of telling that physical therapist: "I told you so." 😋)

    #EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #Jointpain #Weather


    How does hybermobile Ed's effect organ prolapse? And surgical repair and recovery


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    Surgery & EDS 🤔 What’s your take?

    I’ve had a multitude of surgeries to repair the damage caused by the 100s and 100s of dislocations I’ve experienced over the course of my lifetime. I read somewhere a while back that surgery was actually not as successful for EDS patients due to it being a genetic condition (which seems to be my experience with repeat surgeries or post-op complications).

    👉 So here are my questions for you bendy folks:

    • How have your surgical experiences been?
    • Have you had success with surgery?
    • Have you had more complications post-op?
    • How has your ortho team navigated EDS-related complications?

    Thank in advance for sharing your perspective! 🙏

    #EhlersDanlosSyndrome #HypermobileType #HypermobileTypeEDS #TheBendyBunch #RareDisease #ConnectiveTissueDisorder #Surgery

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    What joints give you the most trouble? (i.e. pain, subluxations/dislocations)

    For me, it’s my shoulders and knees. I’ve had a few surgeries on both to repair damage from dislocations. AND fun fact: I now have a new knee and tibia in my left leg. What about you, bendy crew? 🦓

    #TheBendyBunch #EhlersDanlosSyndrome #ChronicIllness #ChronicPain #HypermobileTypeEDS #HypermobileType