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How does hEDS affect tattoos? I have super stretchy skin and slow healing because of hEDS.
Other family members have milder symptoms and their tattoos are fine, but l'm wondering if anyone with a case more similar to mine has tattoos. I'm most concerned about the image warping and the area having weird scar tissue.
Any advice is much appreciated! #EDS #Hypermobility #Tattoos #EhlersDanlosSyndrome

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What "habits" help you cope with your EDS symptoms?

Having a chronic illness like EDS can mean learning how to adapt and adjust in a moment's notice due to daily challenges like joint instability or pain or fatigue and GI issues.

What have you found that helps you cope with the sometimes unpredictable and inconsistent symptoms of EDS? What methods would you suggest others try?

📖 Want to know the "habits" or coping strategies of other Mighty zebras? Check out this article by Paige Wyant here: themighty.com/topic/ehlers-danlos-syndrome/habits-people-ehl...

#EhlersDanlosSyndrome #RareDisease #Hypermobility #ChronicIllnessEDS #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia #MentalHealth #Anxiety #Depression

22 'Habits' of People With Ehlers-Danlos Syndrome

"I'm forever stretching and cracking my joints."
24 reactions 8 comments

Dismissive doctors

My name is Leaffouse. I’m 33 years old, living in New England. I am diagnosed with ASD, ADHD, PTSD, OCD, Vasculitis, POTS, MCAS and hyper-mobility. My previous doctors wouldn’t diagnose me with EDS but it’s highly possible. I’m also going through something neurological that is similar to MS or Early Onset Parkinson’s (symptoms of both so they need to do more in depth testing rather than just an MRI) that I need find a diagnosis for but all my tests come back “within range” and imaging I’m told is normal.

My neurologist, come to find out a PA, told me everything is in my head. It’s clearly not. The only doctor in my corner was my primary and we just moved out of state so I need to start all over! I was to be seen at Wake Forest but now I’m stuck starting over, waiting for referrals and praying I get a good doctor. They even misdiagnosed my vasculitis and told me my images were normal.

#Vasculitis #EhlersDanlosSyndrome #Hypermobility #MultipleSclerosis #ParkinsonsDisease

6 reactions 8 comments

Weight loss

I’ve been at the GI dr off and on since February for appetite loss, reflux, etc. I’ve had all the routine scopes- they found gastritis (not H. Pylori) and a tortuous colon. I cut out dairy for the past 2 months, because it made me worse… and I’ve lost almost 30 lbs. Are there any other bendy folk out there who struggle with unintended weight loss? I was always really thin as a kid, too. #Hypermobility #WeightLoss #POTS #Gastritis

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Advice on sport

I've got joint hypermobility and can feel my hands stretching when I use a rowing machine. Sadly rowing is something I've always enjoyed and it's my best way of getting exercise. But I've stopped for a while as the pain in my hands was getting too bad. I wondered if anyone else experienced the same and what you may have found helped? #JointHypermobilitySyndrome #Hypermobility

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I need confidence help #Postop #Surgery #EhlersDanlosSyndrome #Anxiety

I need some help. I had ankle surgery in January still trying to recover just got out of the boot. I need to wear a compression sock because it still swells to the point of being painful. I wear it just fine with pants but I need some mental help i will be going to a warmer climate in a few weeks and not sure how to deal with shorts and compression sock. I'm super self conscious and keep my issues to my self but I'll over heat if I try to wear pants all weekend. Any suggestions or cute outfit ideas #ChronicIllnessEDS #Hypermobility #hypermobileehlers-DanlosSyndrome(hEDS)

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Emotional Support Animals

Hey Mighties
Who of you gets daily "therapy session" by your emotional support animal(ESA)? What kind of ESA do you have?
I have 3 bunnies, with 3 totally different characters, and each of them helps me in a different way. On the pic is bunny Coco Chanel, who is using my bed and me to hop on and off. She loves cuddling.

Emotional support animal #Ehlers Danlos Syndrome #Hypermobility spectrum disease #Depression #TheMighty #ADHD #Anxiety #Highly Sensitive Person or HSP #Arthritis #Emotion #Bunny #Easter #GastrointestinalDiscomfort #Insomnia

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What’s been your experience with patient advocates?

Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

What have your experiences been like with patient advocates? Did you find one that was helpful to you?

✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: themighty.com/topic/ehlers-danlos-syndrome/find-hypermobile-...

#EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
#HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
#MentalHealth #Anxiety #Depression

10 Tips for Finding an Ehlers-Danlos Patient Advocate

Find someone who understands your struggles and can offer support, advice, and a healthy dose of humor.
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