hypermobility syndrome

Hi, my name is monkeymannnnnn111222. I'm here because

#MightyTogether #HypermobilitySyndrome

Hi new here! I was just diagnosed with g-hsd and suspected hEDS (I’m going through some testing now) I had my echo a few days ago (haven’t got my results back) but the lady doing it kept commenting on the fact that my resting heart rate is high 100-120bpm and if I speak it jumps to 140bpm. Has anyone else experienced this (high resting heart rate) or could this possibly just be something unrelated all together.

#EhlersDanlosSyndrome #HypermobilitySyndrome

Hi, my name is Ouroboros18. I'm here because

#MightyTogether #Anxiety #Migraine #HypermobilitySyndrome

i'm a younger person who has been in chronic pain for around a year and a half (since april 2023) without answers. i had chronic EBV mono for about seven months, late december 2023 to early august 2024.

i have chronic stomach pain and GI issues. currently, my pain is every single day and it can be from mild discomfort to 'take me to the ER'

i've been diagnosed with autism over the summer, which is so great! i had agoraphobia for many months, but with twice-a-week therapy, i was able to overcome it.

i also was diagnosed with POTS only ~1 week ago.

i went to a hospital 2 hours away to a GI specialist, and it was one of the worst doctor visits i've ever had. it was a very religious christian institution, which i was not aware of (i am personally not christian). i don't want to go into details, but i feel very lost.

i am on the journey of getting treated for endometriosis-like symptoms by an out-of-state gynecologist. i am on a new medication and may get surgery in around three months.

i'm so tired of being in constant pain. i would love to know if anyone has gone through something similar to me, i feel so alone right now.

⁀➷ #ChronicIllness #Autism #AutismSpectrumDisorder #ChronicFatigue #ChronicEpsteinBarrVirus #Endometriosis #POTS #IrritableBowelSyndromeIBS #EhlersDanlosSyndrome #HypermobilitySyndrome #Neurodiversity #BorderlinePersonalityDisorder #PanicDisorder #PanicAttacks #Agoraphobia #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #PTSD #PostTraumaticStressDisorder

Hi, my name is artbytinar. I'm here because

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #HypermobilitySyndrome #ME

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

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

i was told by a rheumatologist i have hEDS but my PCP doesnt know enough about it to officially diagnose me. she think i might need to see a geneticist to be fully tested but isnt sure if thats the case with hypermobile type EDS. can someone whose been diagnosed help me out? my PCP said to ask here after i told her about themighty and to send her anything i find out. PLEASE HELP and thank you #EhlersDanlosSyndrome #HypermobilitySyndrome

Hi, my name is kme626.

#MightyTogether #BorderlinePersonalityDisorder #Migraine #PTSD #AutismSpectrumDisorder #HypermobilitySyndrome #Depression #BipolarDisorder #Dysautonomia