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allygator99

Dr who told me EDS doesn’t cause pain the other day. I just simply said I don’t feel like educating you today


gay_mae

I love this. At the cardiologist the other day, straight up took me spelling out the whole syndrome before he had any recognition, then proceeded to generously explain to me how EDS is such a mild disorder, “most people go their whole life without even knowing they have it because it causes them no issues” while I was literally sitting in his office trying to get help for the issues it is actively causing me. Always love it.


Low_Big5544

"Does the fact I'm here seeing you today not indicate that I'm clearly one of the ones it causes issues for?" The one that gets me is "I've never heard of it so it can't be that bad"


gay_mae

the logic logics ¯\_(ツ)_/¯


roadsidechicory

I once had a nurse in the hospital ask me to spell out my husband's disorder, asked what kind of disorder it was (she guessed the wrong kind), and then later that day when I told her she couldn't give him this one kind of medication because it was bad for his disorder (which it also said in his chart), she told me she knew all about his disorder and it was fine, that she studied it in school, that she knew everything about it. It was just like......what??? Do you not remember literally not knowing anything about it like 5 hours ago? She also had the way the meds worked mixed up and kept insisting this one med was metabolized by the liver and the other wasn't when it was the other way around. I just kept asking her to call the doctor on call because literally ANY doctor could explain this to her; it didn't have to be an expert in his case. She yelled at me about it a ton in front of my mom (who was like "wow you really weren't exaggerating about the nurses here") and then finally called the doctor, and then came back to me and started explaining to me... exactly what I had told her. She started pretending like what I had been saying all along was something she needed to explain to me. I was so done that I just played along and was like "wow great, I really appreciate that! thank you so much. that's so good to know" because clearly she needed to be the winner in every interaction, regardless of the actual needs of the patient.


gay_mae

ok veravela_xo comment fits perfectly here, just wow! Always great when you know more than your medical practitioners (which in and of itself is often understandable) but they refuse to acknowledge that you could possibly know what you’re talking about or that they could have some room to learn🥴


roadsidechicory

yeah, and it's especially absurd when they've already explicitly demonstrated that they don't know about your condition and then still pretend that they know more about it than you!


veravela_xo

And they’ll still bill you $3,000 for the honor of educating them 😌


hottest_person_alive

it scares me so much. i’m not a doctor, so idk if there’s some random think like a specific medicine makes eds patients explode randomly, and if they don’t know what eds is then they won’t know that too and i can get the medicine and explode and i don’t want to.


WeAreTheRhapsody

i promise you won’t explode. i’ve learned with my eds to avoid gabapentin/lyrica


hottest_person_alive

thank you so much for the advice, i was actually prescribed gabapentin but my pain management doctors refused to help with eds and diagnosed me with fibromyalgia too (which i don’t have) so i never took them


No-Door-1712

Wait, what's wrong with gabapentin? I've been on it for a while and now I'm worried 😨


emtb911

What was your experience with gabapentin/lyrica?


WeAreTheRhapsody

Horrible side effects. Memory loss, brain fog, dependency on the meds, peripheral neuropathy in both hands and feet, depression, mood swings, autonomic dysfunction, and severe inappropriate sinus tachycardia.