Ehlers-Danlos Society

Dealing with Ehlers-Danlos Syndrome (EDS) and other chronic muscle and joint conditions has taught me a lot about how the body works under stress. One key takeaway is that when muscles are overworked or injured, they tighten up as a defense mechanism. This process takes up a lot of energy, so to conserve resources, the body smartly creates scar tissue to bind everything in place. It’s a clever form of resource management, designed to prioritize immediate survival needs. But the trade-off? Long-term function gets compromised.

One of the most important things I’ve learned is that getting those tight, restricted tissues moving again is the critical first step in recovery. Over the past decade, tools like foam rollers and massage balls have become mainstream. But while they’re great for some people, they don’t always work for bendy bodies. Our muscles overlap differently, and areas like joints require special care. Plus, when you add issues like Mast Cell Activation Syndrome (MCAS), dysautonomia, and fragile lymphatic systems into the mix, direct compression often does more harm than good for many of us.

For people with hypermobility, it’s all about balancing the release of bound-up tissue and restoring healthy function—without irritating the body further. Once the soft tissues regain mobility and inflammation calms down, the body stops compensating and is ready to rebuild strength and proper function and with even better body-mind awareness. Proprioception (the body's ability to know where it is in space, e.g. how you can touch your nose with your eyes closed) can improve, and daily tasks can start to become less burdensome.

It's all incremental though, hypermobile bodies deserve and need gentle progress.

I'm so thankful to the Muscle and Joint Clinic for their diverse and gentle approach to healing. Focused shockwave therapy brings instant relief to my tired muscles and red light therapy down regulates my nervous system. Getting myself into the rest and digest mode has been so vital to my healing.

While my symptoms can flare up in sudden and unpredictable ways, my recovery time is dramatically shortened. I most recently had a migraine with a brainstem aura that had me 1. worried I was having a stroke and 2. asleep for close to twelve hours and sensitive to light for more. I was worried about what that much bed rest would do to my recovery. Luckily, I have some more wiggle room when it comes to full bed rest. My strength and function have been rebuilt enough that I get a day off from physical therapy. A year ago, one day off would cause a cascade of debilitating subluxations and autonomic dysfunction. So while these days feel scary and like there's no end in sight, I'm sitting at my desk two days later amazed that I'm back at 80% function, and not the 20% I would be a year ago.

I’ve focused here on the physical aspects, there's also the emotional layers of healing. Underneath a lot of this body pain, there's definitely the younger version of me, ignored by doctors, teachers, and even childhood friends. I also have to look after her and remind her to not minimize the pain, to acknowledge it, talk about it, and seek the treatment I know I deserve.

#EhlersDanlosSociety #EDS #POTS #HypermobilitySyndrome #DegenerativeDiscDisease #AutonomicDysfunction #ADHD #neuro #Fibromyalgia #MastCellActivationDisorder #MentalHealth

Hi, my name is DaisyRain7. I'm here because #EhlersDanlosSociety #Fibromyalgia #PTSD #Migraine #DegenerativeDiscDisease #PostTraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome

I had surgery in December and it has come with extra drama that it taking all of my brain power and has made my anxiety and depression flare its horrible self. I dont do change very well. My boss left to another job so I have to get used to the idea of having a new person in my office , I was getting ok to that idea but now we are getting more new people and some will get put in my office. I am trying to rearrange my office to add them in and it is not going well in my brain every time I think about it and try to figure out my office it makes me anxious I dont have energy to deal with this. And I can't exactly tell my super boss no I have an office that is too big for the people that go in it anyways but it's really bugging me I guess it's better than me completely changing to a smaller office and at least I shouldn't have to move my little space. This is dumb that its bugging me so much.

Hi, my name is StretchySam. I've been diagnosed with a number of things in my life, while also being blown off by many doctors, finally leading to the diagnosis of hEDS. I am still awaiting my genetic testing for any overlapping disorders, or EDS types, as Hypermobile EDS is a clinical diagnosis. I am hoping to find a community of people who understand what it's like and to, hopefully, be that for others.

#EhlersDanlosSociety #Fibromyalgia #Anxiety #Migraine

Just wondering, does anybody know of counseling? 1 on 1 that specializes in chronic illness patients. #ParkinsonsDisease #EhlersDanlosSociety #MentalHealth #PeripheralNeuropathy #FunctionalNeurologicalDisorder

I am feeling a lot of shame and internalized ableism after finding a sense of relief with my back brace. I immediately felt cinched in and relieved the micro movements in my spine the moment I strapped my brace in place.

Although, I felt happy and hopeful about finding a non-medication form of pain relief. Dealing with the hate and skepticism of an invisible illness and having people gaslight me and tell me I am too young or look "able" enough to wear a brace. Sent me off to a PTSD rage fit where I almost destroyed my brace and assistive devices altogether.

I felt like I wasn't ready to be in public and have people focus on my back brace. Or dealing with the pitiful looks. Why do I feel shame after feeling happy I gained more spoons.

#EhlersDanlosSociety #ChronicPain #PTSD #InternalizedAbleism