Ehlers-Danlos Society

Hi, my name is _edcaeg. I'm here because I have been diagnosed with Ehlers Danlos.

#MightyTogether #EhlersDanlosSociety

I had just asked a friend what she was doing for Thanksgiving and she told me this; "I'm spending the day with my mom and nothing else because last Thanksgiving I had planned to surprise my dad at the nursing home by making Thanksgiving dinner at home with all HIS favorites and bringing it to him. That way we could still eat the holiday meal together and he got to enjoy his favorite holiday foods instead of the traditional meal the nursing home provided. However, I was to late. He died 3 days before Thanksgiving "!
My response to her was; Do not blame yourself! What you had planned was a very wonderful surprise and if it were possible to be sad in heaven, I'm sure your dad was shedding some tears; 1) because he was so proud you had planned that and 2) because he missed it! But God's timing is not our timing! That is whatis forgotten until some like a death cruelly reminds us. So remind your loved ones of your love. Because we never know what God's timing will be!!

I come back here after a long time, but I feel sadder than ever. I've been doing psychotherapy for a year now, but talking about my illness and my emotions is devastating me. I have always had a very bad relationship with my illness and since it influences my whole life, I have many aspects to resolve and face. Furthermore, I have never talked to anyone about my illness, it's hard for me to talk about it even with my therapist and it took me a long time to open up. I often remain silent with her and I withdraw into myself, even if not intentionally. My illness has absorbed me completely, it has stolen my identity and my happiness and I feel a sense of emptiness that I cannot fill. I feel so sad, discouraged and alone, I don't know how to move on. Sometimes I feel like I'm even worse off than before, when I used to bury all these things inside me, hiding them even from myself. My therapist also convinced me to do a medical check-up after a long time, but I've always had bad experiences with doctors and I'm terrified. I know that sooner or later I would have to face my illness and all the monsters inside me, but sometimes I feel like I'm fighting with something bigger than me, which takes my breath away and I feel overwhelmed. If anyone has been through something similar, I'd love to hear your experience and get some advice! Thank you💞#ChronicIllness #ChronicFatigue #EhlersDanlosSociety #EhlersDanlosSyndrome #CheckInWithMe #Loneliness #Depression #Anxiety #Disability #DistractMe #RareDisease #MentalHealth #InsideTheMighty #ChronicPain #SocialAnxiety #Grief #MightyTogether #MyCondition #SocialAnxiety

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.