I’m so glad the story struck a chord with you, although I’m really sorry you’ve had to deal with these issues as well. It’s honestly distressing how common this kind of story seems to be, particularly among people with ‘invisible’ diseases, and especially among women.

I actually am a bit familiar with EDS — again thanks to my online support groups. Like fibro, it seems to be a fairly common comorbidity with narcolepsy. I wouldn’t be surprised if some of the fibro cases are actually misdiagnosed EDS, and I also wouldn’t be surprised if a lot of the comorbid narcolepsy occurs by the same mechanism that I suspect my own did.

I did bring the possibility of EDS up with my GP and the verdict was that I’m borderline. I have a few joints that are hypermobile, and (obviously) a number of the related symptoms, but not quite enough to clear the diagnostic bar. The conclusion they came to was that it’s possible I have it (my official diagnosis as of right now is actually chronic pain syndrome, possible fibromyalgia — but fibromyalgia is just so much easier to say :P), but that since my major symptoms seemed to be related to the pain and fatigue, Cymbalta would probably be the first-line treatment in any case.

I really appreciate the suggestion though — I think in many ways, this is really the value of the Internet. As much as doctors deride ‘Dr. Google’, I have found out so much more about my symptoms and disorders via the Internet — both Google searches and conversations with other patients — than I have within the clinic.

ETA: Wanted to add — while I was in the emergency room waiting to be assessed when I had cardiac side effects from the dexedrine, I overheard a mother telling the doctor on call that they were there because her son had cut himself and he has EDS. The doctor barked, “What’s that?” She explained that it’s a genetic disorder of the connective tissue. He replied, “What does that mean?” I could not roll my eyes hard enough.


Disability-led design & health justice. Director of Communications for The Disabled List. They / theirs. Tip jar: paypal.me/alexhaagaard

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