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Knee subluxations?

I have ME/CFS, erythromelalgia, and what I strongly suspect is hEDS. With that being said, my knees, mostly the right one, subluxate almost daily, and even when it doesn’t come out I sometimes have to “crack it” for lack of better word, in which I straighten my knee as much as it’ll go and it clicks and feels better, for it to feel right. Often when having my legs bent (I.e. sitting on my knees) is when it subluxates. My question is how rare are knee subluxations actually? When I look it up it only shows patella (kneecaps) subluxations and said that real knee ones are quite rare. I’m uncertain because my kneecap looks normal when I know my knee is out partially. To click it back in, I have to straighten it for it to pop back in, and sometimes push it back and like hyperextend it to get it back in fully.

My question is how do I know if it’s my kneecap or my knee, and does anyone have advice on how I can keep it in the freaking socket. Thank you!! 🫶🫶🫶
#Hypermobility #EhlersDanlosSyndrome #MyalgicEncephalomyelitis #Erythromelalgia

13 reactions 8 comments

Clavicle Subluxations

I have hEDS and have many joints that sublux. The worst are my collarbones, subluxing many, many times a day. They dont hurt, but it is uncomfortable and they come out basically whenever i put my arms above horizontal with my shoulders. I always hear about knees and shoulders subluxing, but not much about collarbones. I have tried a lot of physio but my physio has been finding it hand to target the area of muscle that is the problem. If anyone has any experience with collarbone subluxing or any tips and tricks, it would be very appreciated!!

#EhlersDanlosSyndrome #Hypermobility #collarbone #Subluxations


Happy tuesday

Second day of this week. And I'm in emergency . Thanks #EhlersDanlosSyndrome , #Hypermobility .
But I discover in this way, codeine helps me with chronic pain and pain cause of injury.

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What’s your relationship with exercise?

While it’s true that exercise is important and benefits the body and mind in many ways, exercising with a chronic illness like EDS isn’t always as straightforward as it seems. EDS-ers have to take into consideration that some types of movement may do more harm than good for their joints, while also being mindful that de-conditioning happens more rapidly in folks with connective tissue disorders. Listening to your body (and medical advice!) and being realistic about your tolerance and pain levels can help determine the best exercise regimen for you.

It takes a lot of trial and error, but taking care of yourself is worth it.

What’s been your experience with physical movement and EDS?

📖 Here's a Mighty read about exercising safely with EDS by fellow zebra @sarah-saidee-kelley :
What Happens When I Try to Exercise as a Spoonie With EDS and POTS

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

What Happens When I Try to Exercise as a Spoonie With EDS and POTS

"I pull my extra large yoga mat out of my closet and unroll it on my floor. Already my heart rate is climbing. Surely this counts towards my exercises..."
8 reactions 2 comments


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: 22 'Habits' of People With Ehlers-Danlos Syndrome

#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

7 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

6 reactions 6 comments