Oh what the fuck? what. the. fuck. do you mean my condition is so medicalized that when I’m looking up information about it, I can’t find the definition of a word…. ðŸ˜
Hyperadrenergic if anyone can help
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Oh what the fuck? what. the. fuck. do you mean my condition is so medicalized that when I’m looking up information about it, I can’t find the definition of a word…. ðŸ˜
Hyperadrenergic if anyone can help

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i've been realizing lately just how much POTS disables me and it makes me sad that i spent over half my life thinking it was all my fault. my symptoms started when i was 10.
i'd spend hours or even the entire day in the nurses office, unable to do anything but lay down. when i went out of the classrooms, i'd often need someone with me to make sure i didn't fall or faint. i couldn't participate in gym class most times.
but at home, and in middle school and beyond, i was forced to do things - to the point of pain, exhaustion, injury, hyperventilation, and likely hypertensive crisis. my symptoms only worsened, and the list of things i could do narrowed and narrowed.
people just blamed me and pushed me. i didnt get diagnosed until like a year ago. at 21 years old. if my parents had actually fought for me, i might have been diagnosed earlier, and maybe gotten some of accomodations and mobility aids i needed. it's not fair. i wish disabled children - and disabled people in general - were treated better.
friends, I finally got my HyperPOTS diagnosis today
If I have to have an awful chronic medical condition, at least it has a name as hilarious as HyperPOTS
Getting ready for my annual physical by watching TikToks about the autonomic disorder I clearly have but has taken me decades to get diagnosed because I’m fat.
I have EVERY SINGLE ONE of the same symptoms, but somehow they think my POTS will just go away if I lose weight.
Hoping to be fired up enough before the appointment so I’ll advocate for myself better.
How do you have patience with friends who constantly make your pain their own? I understand as humans our natural response is to compare and contrast so we can better understand someone else’s experiences. But my pain was always mine. It was never yours.Â
And here I am returning to tumblr because I need a safe, somewhat anonymous space to talk about this shit show.Â
long story short? well its still gonna be long so buckle up.Â
my health has taken a nasty turn. i mean waking up blind, unable to move, bp 200/150+ type of turn. IIH, hyperPOTs, dysautonomia, etc are all suspected. ive dealth with being limited and having flares and people trying to push me beyond my limits my entire life. but now pushing me beyond my limits could result in a deadly episode.... so when i say no it means no.Â
i was very calm today bc it wasn’t this person’s fault per se but after being in the sun without access to hydration (when i was told this wouldn’t be the case) though for a short period, I was really sick. i needed to sit down someplace cool with water or I was going to need an ambulance soon (which I didn’t express but you could probs see) and while i am grateful she took it seriously after me saying no i cannot walk around with them i am happy to sit here once inside while they do their thing - but then she was sobbing, and i was having to comfort her - UNABLE TO SEE OUT OF MY EYE, HAVING TO COMFORT HER that its okay that I am fine it happens and its not her fault.... but I didn’t have the energy to calm her down when I didn’t to monitor my vitals and keep calm and hydrate.Â
me calming her down for something happening TO ME isn’t anything new, one times was me being dizzy after telling her repeatedly i need to sit down, no i can’t push myself anymore, and I started having tremors and got seizure-like. usually its when i am dealing with my own mental health stuff. its so draining and in ways its so toxic. i don’t think its intentional that she is aware of her toxic behaviors, but she lacks such depth and awareness that there is no room for communication. and any communication (and trust me we’ve rounds and i’ve blocked her multiple times) goes right over her head. she simples cannot understand.Â
today she compared my life threatening symptoms to her claustrophobia. and i am not saying that this isn’t just as real for her -- i have my own OCD issues and I get it, it makes it physically impossible, but i guess it hurt as it always does that my word and the common send of hey my blood pressure is sky rocketing and I am going to have a bad episode and I can feel the pressure building in my neck just wasn’t cutting it.. and as much as my anxiety consumes and freezes me and i feel very much like I am dying, I will not die. But you know what could kill me? These scary episodes if I keep pushing myself, not listening to my body or getting treatment if my BP doesn’t go down.Â
Idk.. it just pisses me off

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Health Update
Got diagnosed with HyperPOTS yesterdayÂ
So now I have Hashimotos and HyperPOTS and some vague hypermobility issueÂ
I got told by my neurologist to see an allergist/immunologist about my hives and possible MCAS and hopefully if I get in I can see my rheumatologist or neurologist again and look into EDS (my neurologist said looking into my pain and joint pain was the next step)
I still feel awful but I feel less awful than when I first got the Hashimoto’s diagnosis because my synthroid does it job well so there is hope.
For now I will still have to lie down a lot.
Tilt table was crazy though I had chest pain, shortness of breath, felt hot, sweating, leg tremouring, and felt lightheaded. I still don’t know my exact numbers (they did not show me the direct test numbers) but I did hear the tech say my HR was over 140 and it sure felt that way. My BP apparently went real high too but I don’t know the number. Typically I would have just sat down by minute two I don’t typically wait out the waves cause my legs get too shaky to stand. I didn’t faint but I have only done that like twice in my life so I was not surprised I didn’t.
Fellow zebras, I'm out of ideas. I have hEDS, hyperadrenegic POTS and I suspect CFS/ME. My doctors tell me to do more sports to gain more muscle. But every time I try to do some exercises and every single time I go to physical therapy, I end up worse. My back hurts more and more and I'm so exhausted up to the point that I can't stand up some days. Sitting is becoming more and more exhausting. I even tried a recumbent bike but I'm becoming worse. The doctors say that I could walk again if I only try hard enough, but no matter how much I drink and how much salt I consume, I get worse.
I don't know what to do. They tell me I need to gain muscle, but whenever I try, the pain gets overwhelming. What can I do?
Trying to explain CFS (and related conditions) to people is impossible. Nobody believes it could possibly be that bad, or that so many things could be wrong with my body at once.
Idk if being mild to moderate is better or worse, because some days I can still go on short hikes and strenuous outings? But then 72 hours later like clockwork I'm bedbound, panting to catch my breath, too weak to lift a water pitcher.
Since I started pacing it's gotten a little better/more predictable, but sometimes I'll wake up in a PEM crash with no idea what caused it. Or maybe not-quite-a-crash, maybe a hyperPOTS or dysautonomia flare because of the weather or the pollen count or who knows what-the-fuck. 🥲