ballerina22

It is much more common than it was thought to be, even 5 years ago. I was diagnosed earlier this year at 36 after a lifetime of subluxing / dislocating joints, random injuries, constant pain and exhaustion, and a whole 'nother slew of issues that no one put together before. A lot of people with EDS are turned away as drug-seekers or misdiagnosed with a hundred other conditions.

I 110% recommend that you find a geneticist to rule out the more dangerous and potentially fatal types.

I'm a collection manager / registration specialist. I must say that you are quite often used as a case study in graduate-level museum studies degree courses, especially those on legal and ethical issues in museums. How does it feel to be so infamous to my community? FWIW, we are almost unanimously impressed and disturbed by your skills!

Brave soul. I had all the exterior nerves stripped out of my head in January following a traumatic brain injury - it was years ago but wasn't until last year that anyone figured out what was wrong. I've got two three inch-plus scars on the back of my head and had most of the hair shaved off the back of my head. I'm only just back on me feet and starting to exercise again; I was a long-distance runner before but I doubt I'll ever be able to do that again. I'm still on muscle relaxants and some heavy duty painkillers.

So. Yeah. I'm sorry you have to go through this. Kick its ass.

Wow, I read more in the comments, and my symptoms track so closely to my own. Mine all started after a botched spinal tap where all of my CSF leaked out into my lymph system and left my brain uncushioned and banging around the inside of my skull. It did create a chiari malformation, but that was only temporary while my body created and replaced all the CSF (and that took about a year). I couldn't figure out why I was having non-positional headaches after the healing; I've spent, at a conservative estimate, 2 1/2 years in bed out of the last four, and I've had the same headache every day for about four years.

As you know, that's bad enough, but it's all the other symptoms that start cascading. My left arm goes numb on and off; I can use it normally, but I can't feel it. I had mini-seizures for the six months prior to surgery - I'd simply black out for five or ten seconds at a time a half-dozen times a day. The long-term damage of my brain resting on the top of my spine left me with all kinds of permanent nerve damage and compression, leaving me with awful neuropathy in my legs and crappy vision.

Things are generally improving since the surgery, although I know you and I both have a long road ahead of us. My vertigo, mini-seizures, and neuropathy are almost completely gone. I've started physical therapy post-surgery because the surgeon had to take out so much damaged muscle tissue in my neck to get to the nerves. I get tired and exhausted easily, so I'm usually done for the day by 4 or 5PM. I'm sleeping better, eating better, working out a bit, so I know I'm on the mend, but it's slow. You don't notice the day by day improvements, it's when you suddenly realise "wow, I stayed up til 10PM tonight!" or "I walked two miles and didn't want to die afterwards!".

Best of luck!

Everyone expect surgical recovery to be tough, but I didn't expect that it would take so long. Then again, I had zero endurance, crap sleep habits, and severe nausea all the time so I started far, far back from the starting line. I'm astounded at how far I've come in five months, but I realise how much further I need to go. Frankly, feeling 'normal' makes me ecstatic. Being able to walk the dog by myself or go to the grocery store to pick up my medications seem like such minor tasks but I'm dead proud of myself. I'll work my way up to having a job again. Someday.

As to my blackouts, I don't remember ever losing consciousness. I only blackout fell once but that was because I was on a treadmill and I'm a gigantic spaz at the best of times. I guess the best way to describe them is that I'd freeze up momentarily or feel like I had a sudden unexpected system reboot. I hadn't noticed them for a while; it was only when watching a film one day that I realised "oh what happened? I didn't think I was that far into to film already..." None of them lasted long, or none that I can remember. They were brief moments that I just lost time. It sounds weird but I suspect your experiences are a great deal like mine. Mine have got much better, if it helps!