Dysautonomia

Hi, my name is dani35. I'm here because

#MightyTogether #Dysautonomia

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

Last night there was a cockroach in the kitchen, when I saw it I almost die KAHAKAJ, My heart was beating fast and I couldn't breathe for a second.
The cockroach didn't hurt me, I'm a survivor 💪 #AutonomicDysfunction #Dysautonomia #POTS