Posts tagged ehlers danlos

Posted 3 days ago
I can't get drunk, no matter how much I drink. (Like, a whole bottle of vodka does nothing, like drinking water.) Caffeine does nothing. Pain pills (tylenol, aleve, oxycodone, dilaudid, etc) never touch me. Antidepressants do nothing. I don't even get side effects. It's like I don't digest them at all. But some drugs that don't affect my brain do work, such as laxatives and penicillin. Drugs that are inhaled also work. Could this have something to do with EDS, and has anyone had similar issues?
Anonymous asked



I have some of these issues, such as caffeine and some pain pills don’t work for me, but it’s not all of them. I can get drunk and my antidepressants work, I believe. Any ideas?

Resistance is an issue with EDS that is gaining awareness at least with dentists. If I don’t have a natural resistance to a drug my body quickly develops one. As to why I have no clue

Posted 1 month ago


meet ehlers danlos syndrome, everybody

(Source: kittengotnospoonsforme)

Posted 1 month ago


Sometimes, people who don’t know crap about anything say that EDS can’t be that bad. Maybe this puts some perspective on it: I had two others family members with EDS.
Both of them were my uncles and it destroyed their lives.
I was the first in my family to be officially diagnosed via a geneticist, confirmed on my dad’s side- which explained the issues some had experienced.

One great-great aunt was actually in a true to life freak show for her voluntarily deforming joints. Supposedly, she drank herself to death.

The two uncles I spoke of were always in pain. Doctors couldn’t find out what was wrong with them and both were told they were just making it up. Over years of desperation and extreme pain, both became addicted to illegally bought prescription pain pills. Their wives left them, they lost their jobs from missing work for constant dislocations (no one believed that they could just keep being traumatically hurt from nothing and called them liars). Everyone thought they were just addicts looking for drugs, their lives collapsed a few years apart.

My uncle James hung himself in his basement in 2001.
My uncle Bruce shot himself in the head one morning in 2003.
Only after genetic testing revealed the cause did my family see this pain wasn’t in their heads, that they’d been crying out for help for years in genuine pain only to be ignored until they finally gave up.
This is why I try so hard to be positive, it’s all too easy to be beaten down by this disorder so I try to keep joy in my life. I’m lucky to know the name of the condition and have proper palliative care, I wish I’d been diagnosed as a kid- my uncles might still be alive.

Posted 1 month ago



Signal boosting…

(Source: luna-lebleu)

Posted 1 month ago
Posted 3 months ago
Posted 1 year ago
  1. Me: There's no "good" way to stand with Ehlers-Danlos.
  2. Me: Actually for that matter there's no good way to sit either.
  3. Me: Or lay down.
  4. Me: There's just no good way to exist with Ehlers-Danlos.
Posted 1 year ago


I got asked by my flatmate last night if EDS stood for endless dislocating syndrome. I think I may just call it that from now on.

Posted 1 year ago


a very good video about eds

anyone with eds should watch this

Posted 1 year ago

Great paper on hypermobility


This seems to be a great explanation of hypermobility and the related problems it can cause, by Alan G. Pocinki, MD.

I found the explanations about adrenalin and the autonomic nervous system particularly helpful because I have POTS, and cry embarrassingly easily when I’m put under a little pressure. (No, really, talking about my illness, having trouble unlocking a door, putting the money into the wrong slot at the supermarket…). It talks about all kinds of things though- headaches, sleep problems, uterine and bladder issues. If you feel like your entire body is falling apart you’re not going mad! On the other hand, he’s also sensible and reassuring that there’s no reason to think that if you have some of these symptoms your condition will escalate and you’ll get the rest. I know I haven’t got the type with serious vascular problems, for example.

Anyway, this looks really good. The author says:

“My patients have long asked for something to share with their families,
friends, and even physicians, to help educate others about their condition. I hope
this paper helps fill this need.”