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jtthomasSo I have chronic pain. Yet doctors have denied it's possible for me to have chronic pain because:
a) I was sixteen when I first started asking why stuff hurt (and offering an explanation that fit); and
b) I'm autistic and not afraid to stim.
So clearly all my pain in my ankle, knee, both hips, both shoulders, and my back is because I move my hands too much to be good for me, one says.
The other insisted that I was too old to be diagnosed with the one thing that fit. Here's the thing: the diagnostic criteria for that disorder, Ehlers-Danlos or hypermobility syndrome, DOES NOT APPLY until...
You guessed it: age sixteen.
So now I'm stuck in limbo on a high pain day where ibuprofen does nothing for the pain. And my skin is reacting to an unknown something*, and every time I stand up I'm close to fainting no matter how careful I am. And if only I had the Ehlers-Danlos diagnosis -- which is pretty obviously the thing wrong, not only for me but for my niece and to a lesser extent my mother -- then these symptoms, parts of common comorbidities, could actually be treated.
But no.
*Unknown something could be traces of wheat or potato, both of which I know I'm allergic to. And both of which are extremely tempting. But the reaction could just as easily be to my soap or to something in the air, because the reaction is nearly continuous.
a) I was sixteen when I first started asking why stuff hurt (and offering an explanation that fit); and
b) I'm autistic and not afraid to stim.
So clearly all my pain in my ankle, knee, both hips, both shoulders, and my back is because I move my hands too much to be good for me, one says.
The other insisted that I was too old to be diagnosed with the one thing that fit. Here's the thing: the diagnostic criteria for that disorder, Ehlers-Danlos or hypermobility syndrome, DOES NOT APPLY until...
You guessed it: age sixteen.
So now I'm stuck in limbo on a high pain day where ibuprofen does nothing for the pain. And my skin is reacting to an unknown something*, and every time I stand up I'm close to fainting no matter how careful I am. And if only I had the Ehlers-Danlos diagnosis -- which is pretty obviously the thing wrong, not only for me but for my niece and to a lesser extent my mother -- then these symptoms, parts of common comorbidities, could actually be treated.
But no.
*Unknown something could be traces of wheat or potato, both of which I know I'm allergic to. And both of which are extremely tempting. But the reaction could just as easily be to my soap or to something in the air, because the reaction is nearly continuous.
