this post was submitted on 08 Jul 2024
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Autism
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I'm no doctor but I've been living with this my entire life. I'm only realizing recently that is not normal to be in constant pain and so chronically exhausted that even my libido has almost completely died. i am now seeing a cardiologist and had to wear a heart monitor for 2 weeks and get an echocardiogram, because i was nearly passing out from very light work in the heat. my doctor suspects POTS and i know that I'm hypermobile, but having trouble qualifying for testing for Ehler Danlos. these conditions commonly present together and pretty much take you out of commission. definitely see a doctor.
doctors will probably give you the run-around at first and say it's depression. well, let me tell you from extensively researching my symptoms, that depression can develop from these symptoms, it's not always the cause. i am depressed and anxious because I'm constantly in a state of pain and exhaustion and nothing i do is ever enough to keep up. it's a horrible way to live and I'm hoping for answers so i can at least have guidance from doctors on minimizing these things.
EDIT: i now see what community this post is in. POTS and EDS are higher in the autistic community. read a bit into those conditions and see if you relate.
I actually went to the doctor once because I almost fainted when taking a blood pressure test. I have this occasionally, also when riding a bus or train when it’s hot outside.
They did some basic tests, but didn’t do a tilt test because at that moment, i didn’t seem to have any issues.
Actually, most of the time I go to doctors, they say I’m perfectly healthy and nothing is wrong. But I do feel uncomfortable and painful relatively often.
I also think that when I visit any doctor, my heartrate shoots up, which brings it closer to the normal or higher range. Even though from day to day, my heart rate is typically very low and I frequently feel like blacking out when standing up.
I don’t really have a strong mindset though, so i will typically not challenge a doctor’s opinion. Especially not when I’m feeling low energy and tired (which is usually when I go to the doctor)
you sound a lot like me, until i got scared i would lose my job. i haven't tried talking to doctors about this for years because i was dismissed without tests or anything and i didn't have a frame of reference to tell them how bad it was. i finally just laid it all out to my doctor, almost crying because i was taking at least 1 sick day a week at that point. i waited WAY too long and my body literally said "fuck this" and stopped. but i have a more active job, so i am literally unable to perform my job duties at times now.
I'm really hoping for some help, but neither of those suspected conditions have a cure, you basically just learn how to live with it.. good luck to you on your journey.