Welcome to the World of EDS: Tips & Tricks for the Newly Diagnosed

I'm crying and crying. I am used to medical gaslighting all day long. I never heard someone talking so respectfully about a patient group. I am married and my wife is the best although she is sick too. I'm stuck at home and the two of us are all alone. No friends, hardly any family. I never cry when watching YouTube. This is like the second maybe third time since the start of YouTube ... But I think this is that sparkle of hope inside me, I needed for years. Thank you all so much

I was diagnosed today. Actually, my own diagnosis was confirmed by a geneticist today. My primary care doctor has been largely blowing me off for the past 10 years, so I dug around, researched my symptoms on my own, and came up with a layman's self-diagnosis of EDS with MCAS; which are exactly what I was formally diagnosed with today. #BeYourOwnAdvocate

Hearing your introduction to people who have EDS was like a clear breath of fresh air after being stuck inside a gas chamber. It had me in tears because it was the first time I've heard anyone describe this condition to be anything other than bad. I really hate to be a downer, but it's true. Most of the cases I see online present differently or much worse than mine does. So it's just been this impending sense of dread everytime I learn about another piece of this that I haven't yet encountered: I would just sit there wondering how much time I have left. I've been desperately searching for a bright side - even after I stopped believing it was still there. What you said made me feel like I wasn't so alone in this anymore. We are more than just joints, muscles, and tissue waiting to fall apart. We are unique, special real people who have so much to offer each other as well as the rest of this world. Thank you.

I am 53. Finally got my diagnosis today.

Newly diagnosed. My 16.5 year old was diagnosed first. My sister has it, too. My sister and I are thankful. We always knew there was something wrong. We weren’t hypochondriacs. We feel good that our kiddo (my sis co-parents w me) will get the help she needs now vs 38 years from now.

Thank you so much for this talk. I was officially diagnosed earlier this year. My identical twin sister was diagnosed with hEDS in 2014. The doctors didn't believe me that my twin sister was diagnosed and so I took copies of her letters from Dr Mathias and Prof Graham and took them with me to the hypermobility clinic where I was then diagnosed. The rheumatologist I saw in the NHS didn't even bother to examine me and simply said I wasn't hypermobile. I am now thankfully having physio and beginning to see improvement. I'm just so grateful for the ehlers danlos society and the wonderful doctors and physios at the hypermobility clinic in London.

I like her approach of supporting the whole person, rather than just the physical elements

Oh god, shoes with support are the most painful thing in the world, as are orthotics. Barefoot is the only tolerable way, but even that hurts.

I'm finally diagnosed at age 65. Everything I've struggled with my entire life is now explained. I'm disappointed that no Drs or PTs I've seen noticed my symptoms as a whole until my most recent Ortho doc asked if I had EDS. I wish I hadn't pushed myself so hard physically because now I'm worn down with arthritis. Symptoms have just escalated so quickly since I've been caregiving

Just found this video. Found out just over year ago I am a candidate for hEDS or HSD. It is IMPOSSIBLE to get medical professionals to listen to me. At 54 (now), they just write it off as arthritis. Funny thing is, first serious symptoms I had showed up when I was 19, and then the doctor's response was (your too young for arthritis, it must be in your head). Where I was sent to a shrink that was equally ignorant. Between them they decided I was actually suffering from schizophrenia, indicated this on my air force discharge papers. I knew that was wrong (Autism, ADHD is what we have since proven. But just to give everyone a idea of how messed up things can get, when I requested replacement discharge papers ALL the medical references where removed including all my medical visits during my enlistment and the discharge had been changed to poor conduct. I was never disciplined on conduct my entire time in the Air Force. The hardest part, my Autism is in the Asperger range. Meaning I am much smarter then the average person and unlike most with this condition I am not limited on a specific field of interest but bounce from several advanced fields of science. (point of fact, I can't do names, dates, face recognition or english(spelling) well. So most of the time I am smarter then the doctor (without the specialized education !!), so when their bias kicks in I walk out. No tolerance for ignorance within the medical field with decades of failures on their part to get things right.

Did anyone here got diagnosed with fybromyalgia, raynauld syndrome, hypermobility, asthma, before they found out its actually Ehlers-Danlos syndromes?

Thank you for this💜 I’m 42 and just diagnosed with HEDS. I always put my shirts on inside out lol

Not diagnosed yet, although after so many comorbidities I know what comes next, and it'll be EDS type III among dysautonomia and POTS (which are quite new for me, the diagnoses not the symptoms). Yet, waiting for someone to tell me how should I manage my finances. After achieving college, a second language proficiency, and a few other small achievements, I keep losing myself under a pile of diagnoses and nobody seems to know whats actually happening beyond symptoms, and nobody seems to say nothing beyond do this or that. Impossible for many many many of us to work, so impossible to get money, so impossible to live these days. Sorry, losing language too due to extreme fatigue, but you know what I mean. I have a neurologist, a gynecologist, a rheumatologist, a general doctor, an urologist.... None of them. Sounds familiar?

this was so comforting, thank you for this.

This was great. Thank you so much.

Excellent. Thank you. Too sick to tell you more.

I’m 29 and finally received my diagnosis yesterday, the specialist then confirmed it’s the reason for all of my chronic ailments. While I’m always in a constant state of pain somewhere in my body, I’ve just grown to live with them as though it was normal. Nothing has changed physically since yesterday, only a diagnosis, however after reading up on EDS and it’s permanent and debilitating components that need constant attention and will never get better…I am now asking myself what the point of going on is, why bother living any longer like this, it won’t get better and I’ll always be walking on eggshell joints, but not for long because my feet can’t handle prolonged standing, my jaw always hurts, my neck and back are always seizing up in pain…why bother what is the point? I understand that I’m in a doom and gloom phase post recent diagnosis, but there is an honest question that I ask myself because I’m trying to find some kind of hope to actually go on and tackle this. Everything suddenly seems bleak now and it’s a horrible feeling.

wahoo thank you so much. I cannot believe the amount of things i learned watching this video. Thank you so so much :D

Does all these things that you "have to do" feel overwhelming to anyone? I also have ADHD and my own.hoise, house hold jobs and my own company, lack of energy and trying to manage life..and it feels a bit too much to do all these extra things that Ehlers-Danlos are asking me. I know I have no choice but I am wondering if it's overwhelming to some of you too?

Diagnosed at 47 its been a difficult road with doctors. No diagnosis to doctors meant I was just drug seeking and no help was ever given.