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Hi, my name is Kegkj. I'm here because I have been diagnosed with Hypermobility Ehlers-Danlos and Dysautonomia.
Hi, my name is Kegkj. I'm here because I have been diagnosed with Hypermobility Ehlers-Danlos and Dysautonomia.
Lol me right now #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #Dysautonomia #Presyncope #Syncope #Meme #funny #relatable #CheckInWithMe #DistractMe #MightyTogether #ChronicIllness
I've never felt more like shit in my life. I've had very unpleasant moments before, but this surpasses them all; I'm deeply depressed. I would never kill myself—I find it a stupid solution to a temporary problem and a lack of appreciation for life. However, I was on the bus on my way to the cardiologist, listening to this Lil Wayne song, “Let It All Work Out.” When I heard those last bars, I felt, just for a second, how miserable I am with such clarity, as if all those barriers between your conscious and unconscious mind that protect you from losing your sanity had disappeared. I wondered what it must feel like to end it all. I think it would probably be a beautiful inner peace, something I haven’t felt in many years.
For a couple of years now, I haven’t felt like a healthy young person. It all started around my first COVID vaccine, about three and a half years ago, I think. I began to get sick every two months, had myocarditis, and I slept through half of my classes in school—a very demanding French school that caused me even more stress because I couldn’t keep up. Also, I’ve never been mentally at peace; since I was a kid, I’ve had a lot of OCD. My mind was always overwhelmed with obsessive thoughts, preventing me from acting normally. I was able to control it with medication, but that doesn’t take away the constant, irrational thoughts that stop me from ever being completely calm.
Then there are the stresses of my relationship with my mom, with whom I clash often due to our very different personalities, and my dad, whom I barely see because he lives in another country, so we have to keep a long-distance relationship. My self-esteem was always low if I wasn’t with someone, but I could never maintain a relationship because my interest never lasted, so I’d have to move on to someone else. Despite all this, I wasn’t entirely unhappy because I thought I’d eventually reach my goals, live amazing experiences, and that everything would heal with time.
But then my whole lifestyle fell apart. Last December, I got sick the day before my graduation party, which I attended anyway. A week went by, and I was still sick. I went to the clinic, and they told me I had COVID. I thought, “No wonder I feel so bad,” and that I’d be fine in a week. That never happened. Since then, I’ve felt sick every day, every damn day. Some days were worse than others, but it was like that 24/7. I went to 20 different doctors, took an absurd number of tests, and no one knew what I had. I spent 11 months like that, with the uncertainty of not knowing what could be wrong. Despite this, I managed to stay relatively patient because I refused to think that whatever I had wouldn’t be curable.
Then a cardiologist gave me my first clue. I had already seen two other cardiologists, but this one specialized in dysautonomia and told me I had all the symptoms of this condition. "Condition" means there’s no cure; you can control it with medication, but it’s not immediate. It’s a process of trial and error, as there are many types of dysautonomia. When I found out a couple of days ago, I honestly didn’t know if my future would be as fantastic as I thought. Now, I’ll never be able to drink recklessly, will have to limit my smoking, will never do MMA again, and just won’t have the energy of a normal person anymore.
And the cherry on top is that just a month ago, I met a girl I felt comfortable with. She stayed at my place four times; I was enjoying the process and looked forward to seeing her each time she left. Then she messaged me saying she didn’t want to meet up as often and wasn’t looking for anything serious. #I am completely defeated by my existence; I can say I’ve hit rock bottom. I don’t know what’s next for me. I haven’t been officially diagnosed yet, but it’s pretty clear what I have since I’ve ruled out most other possibilities.
I don’t know why I’m writing this; maybe it’s because I want someone to listen, or simply to archive my story on the internet. What do you think? What would you recommend? I’m all ears.
By the way, my name is Teo, I was born in the United States but grew up in Chile, and I’m 20 years old. Cheers!
P.S. I understand English perfectly, but writing is hard, so I asked ChatGPT to translate this from Spanish to English. I hope it makes sense.
Hi, my name is dani35. I'm here because
I had a cardiologist appointment today to check on some of my health issues that have been going on for multiple years. Today I saw four doctors in total (all who focus on the heart and everything like that) I told them some of my symptoms but they didn’t let me finish and they said I have something that I’ll grow out of. They said I should drink more water and work out (when I work out my heartbeat is 170) they didn’t want to do ANY tests or try ANY medications. There is a cardiologist in that office that focuses on the autonomic nervous system and they wouldn’t let me make an appointment with them even though I told them my pcp said it be a good idea to see someone who specializes in the autonomic nervous system and my pcp suspects dysautonomia. I have to wait until THEY call me to make an appointment with the doctor that could actually help me but they don’t know when they will call me. They also said I don’t have a connective tissue disorder even though a genetic specialist and rheumatologist diagnosed me with one!!! I’m so tired of not getting the medical attention I need!!!
#Dysautonomia #AutonomicDysfunction #Depression #frustrated
Hi, my name is rondaLdowd.
#MightyTogether #Anxiety #Depression #Fibromyalgia #ADHD #PTSD #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #hypermobile Elhers Danlos Syndrome #myalgic Encyphilities/ChronicFatigue #ongoing Kidney Stonesá a ⁰ⁿ)990⁹0009ⁿ)⁰08⁰877+
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 Enewvi27. I'm here because I live with POTS and the symptoms are very disabling. Looking for support, things to discuss with my Dr's, and alternative ways to deal with this condition. I'm also a single mom with one child on the autisum spectrum and one with learning disabilities.
#MightyTogether #Depression #Anxiety #Migraine #Fibromyalgia #PTSD #ADHD #Dysautonomia
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 WantedSiren. I'm here because I'm looking to learn more about how to manage my conditions to live a more fulfilling (and less tiring) life
#MightyTogether #Dysautonomia #Asthma #Depression #Anxiety