VEDS

#EhlersDanlosSyndrome , #VEDS #HypermobileTypeEDS #Subluxations

I could honestly do with some advice, here; I have a pair of "caregivers" (my parents, incidentally) who seem convinced that I can just "walk off" my EDS-related subluxations, even when I complain I'm in so much pain as I attempt to walk the length of our 900sqft house in order to talk to them about it... :(

So does anyone have any tips, or expert websites for me to send to them? I would be eternally grateful to anyone who could help me make them take my injuries with hEDS as seriously as they do with my vEDS—which they had made me quit my job over after COVID hit state-side, mind you! (They were terrified of bringing it home to me, especially after the experts discovered that it was a vascular disease, as well as a respiratory one!

Any guidance would be much appreciated. Thanks so much in advance!

I want to put my story out there for people to read. I have Vascular Ehlers Danlos Syndrome and Complex Post Traumatic Stress Disorder among a list of other medical issues that affect my daily life.
In the past I have had two big breakdowns with my mental health which brought me to the hospital for some stays and many emergency room visit for suicidal ideations which turned into the eventual two attempts. There have been other times where I’ve had the ideations but was able to seek help before the hospital and even those times were not always great.

At times when I went to the hospitals for help I was laughed out and told to come back when I was serious. I was told other times that the Inn was full and I’d have to convince someone who cared, and that it was a shame my parents couldn’t still spank me. I had just started cutting on my arms at the time, after maybe a year of cutting only my legs. I’ve been told twice to look into physician assisted suicide and stop wasting their time. Some were more concerned with my weight than my mental health at all. I went to hospitals with my “kill kit” and walked out that night or maybe after spending the night with a friend in the room but I had bitten my entire mouth trying to resist the urges to lock myself in the bathroom for the ten seconds it would take me to execute the multiple plans I already had in place. Then morning came and I begged the psychiatrists for help and they told me if I could make it through the night then I was fine. And that I was taking up space in the er for nothing.

Some doctors were great, others were terrible. It just turned out that every time it was a doctor I was counting on they failed me miserably and sent me spiraling mentally. I want somewhere I can write about all of this candidly without it being on like Facebook kinda thing. Where can I do that in a better format than here? #Suicide #CPTSD #VEDS #EhlersDanlosSyndrome

Apparently being hypermobile gives us advantages in life aside from just being particularly difficult. How many of you are talented in means of art, music, sport, etc?
My specialist believes that hypermobility gives us a strong advantage in these things. Most zebras I've met are gifted in one or sometimes all of these categories. So tell me, what's your talent?

#EDS #EhlersDanlosSyndrome #hypermobile #Hypermobility #ChronicPain #ChronicIllness #jointhypermobility #HEDS #ceds #VEDS #JointHypermobilitySyndrome #hypermobilityspectrumdisorder #begnignjointhypermobility

I really wonder how many of us were the "hyperchondriacs" or over reacting to every tiny ache and pain.
The effect this has had on me was disregarding my own health untill a point where now I need genetic testing for #VEDS
learning to validate my own health and see a doctor when I am unwell has been certainly life changing.
I now realise that most of what I experience is symptomatic and to let myself take it easy sometimes or to go see a doctor when usually I may put it off. #EhlersDanlosSyndrome

I’ve been in chronic pain since I was 12. Some days are more bearable than others but since I was 12 I haven’t had a single pain free day.
And psychologically I was already irreparably damaged and traumatized from a very young age.

It took me over a decade of increasingly severe symptoms and several near death experiences before I was even given a diagnosis. Ehlers Danlos Syndrome. I was only diagnosed a year and a half after gastroparesis very nearly starved me to death to the point of permanent heart damage and near-heart failure.

My doctor said identifying my subtype didn’t matter because only one, particularly rare subtype impacted my prognosis. With vascular subtype an aneurism typically gets you around 40-50 years old.

Fast forward to 6 months ago and I suffer a massive pseudoanyeurism in my arm that results in compartment syndrome and very nearly amputation. My left arm is still attached but very nearly useless.

Before we knew I had VEDS I was terrified at the prospect of old age. I already have the joints and pain of an octogenarian. I’m already almost bedridden by pain sometimes. The thought of it all getting worse and worse into my 70’s or 80’s was something I was not willing to endure. I knew I would kill my self before reaching that age because the suffering would simply be intolerable.

The idea that an aneurism could kill me relatively quickly and painlessly (depending on location and severity) was actually comforting to me. And it could kill me a week from now. Or a year. Or a couple decades. So I live each day like it could be my last because for all I know, it might be. And I’m 100% okay with that. Because fighting to survive is exhausting when it’s been for as long as you can really remember #EhlersDanlosSyndrome #PTSD #CPTSD #Survivor #VEDS
#AbuseSurvivors #RapeSurvivors