hypermobile type EDS

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

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

Not sure if that should say happy but today is one year since getting diagnosed with hEDS and I'm not sure how I'm supposed to feel about it . It has been a crazy year went from thinking everything was normal because that's what drs told me to finding out I have a defective body. Adding in meds that I never wanted to have to take, a surgery plus healing complications still 4 months out, discussion for another surgery, questioning everything I feel, did I always feel like this and ignore it or am I over thinking it. And extra diagnosis along the way. Answers are nice but sometimes I want to go back and pretend everything is OK. Sorry for the rant :) #EhlersDanlosSyndrome #Anxiety #POTS #allergy #HypermobileTypeEDS #MastCellActivationDisorder

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: 10 Tips for Finding an Ehlers-Danlos Patient Advocate

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

My name is Mary and I’m a 35 year old single mom recovering from my 6th & 7th back to back surgeries. It took me until 32 after my 5th hip/spine surgery when I finally demanded a genetic specialist for myself in a brand new state. Please don’t give up and know that even if your condition isn’t always visibly obvious like mine you’re not alone ❤️! I had to leave behind the toxic people that kept me from pushing on and finding my truth. I’m grateful for the help finding others that can help me understand the symptoms of my life with hypermobile EDS. #InvisibleIllness #HypermobileTypeEDS #EhlersDanlosSyndrome

You understand why I had to retire early from my home healthcare for seniors other than the obvious progressive debilitating condition right… that face was one of my better ones 😂!

Does anyone else feel like they are the reverse Benjamin Button internally lol

Unfortunately, depictions of EDS in the media are rare, and are not always accurate.

We’ve heard from our community how frustrating it is to see media perpetuating harmful or misleading stereotypes ("you’re so bendy!"), or how isolating it can be to not feel represented at all.

Have you found any accurate or validating portrayals of EDS (whether in books, shows, movies, etc.)? Share with us below.

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