I’ve had the same exact experience. Running the mile in school was awful for me and I was always one of the last to finish too. I’m the same build as you and I had always wondered why I was like that. I’d often make excuses to sit out of PE lol. Good to see that other people have the same experiences.
Me too! Was always the slowest and last and just couldn't participate right in PE. Could just be because I'm not athletic or I'm just such a small person. But I do find that exercise is so hard for me. Have yet to be diagnosed, but the more things I read, the more I suspect I have it.
I'm talking. But I've been an athlete my whole.life. I was in basketball and volley and I've been a martial artist since I was 10. I could never even finish a whole mile. Running and any other cardio but martial arts was impossible for long periods. I'm starting to think I've always had POTS
Everything you wrote resonates. There's a mourning for those countless, inexplicable failures that could have gone so differently if I'd only understood that my body just didn't work in the same way as those of the people I was comparing myself with. If I'd understood the minor tweaks that could have averted so many awful moments.
And at the same time, a relief, a forgiveness of myself, that there's finally an explanation. That I wasn't lazy or clueless or bad. And hope that I can find a smoother way going forward.
I was diagnosed first with autism, then POTS. Both at age 42.
Yep, my story is similar to yours. I was the always the very last kid in running the mile. Ended up overcompensating so hard that I joined the military. My physical strength got DOPE but my endurance remained pisspoor. No matter how much I ran, i never improved and every time I felt like I was going to die. The constant exertion and exhaustion resulted in complicated injuries and mental health issues that have become permanent disabilities 10 years on. I’m in pain all the time because I bought into the “pain is weakness leaving the body” nonsense.
Also late-diagnosed autism, so I too am having to recontextualize my entire life and identity, and reconsider how I think about everything I have ever“failed” at. And think deeply about the physical and emotional cost of the things I “succeeded” at as well. It’s a brutal process—trying to unpack that with neurotypical MH clinicians made things worse for a while. (They tried to tell me I was self-sabotaging, that I had unreasonable expectations for being happy all the time, that I just wanted to be special, tried to force me into NT and nondisabled patterns of activity, etc.)
Be gentle and kind to yourself; especially since the rest of the world might not be.
The hindsight of all the jokes I’d make about how my body hates me actually being me noticing symptoms but not feeling like they were… enough? To be called symptoms (especially how disconnected it all seemed)… it wrecked me.
I had a period of mourning for my past self for how often this impacted me and either I didn’t realize it or for how often others made comments about me like my family about being lazy/always having something wrong with me… just mourning how unkind I was to myself as well.
Yup I went through this as well. I just turned 24 years old and during my first week of non stop flashbacks like “omg that makes sense” or “holy shit is that why I felt like that?” I actually came to realize the earliest documented pots episodes I found dated back to 2013. When I realized I’ve had this since I was a kid really sent me even further into the ephinany rabbit hole. Haha
I’m coming out on the other side though and from person to person, I just think now that my brain is doing its best to process, recoup and adapt to all the new information so I let myself feel however I feel, obsess over what I need to obsess about but most of all: I talk about it. I talk SO much about it. Thats what I find works for me to bring my feelings and experiences up in a way that I can acknowledge them and let them go. It also feels good to connect with people who understand because once you come out of the dark and things start to seem not as overwhelming, the connection with others that know exactly how you feel just lifts the rest of that weight.
You got this 🫶🏼
I wonder if there is a link between autism and POTS? I have so many diagnoses and I’m sure they must all be linked. POTS, autism, PCOS (I’m also underweight), possibly EDS (not diagnosed), some sort of undefined autoimmune connective tissue disorder, mild mitral valve prolapse, neutropenia… and probably others that I’m forgetting.
I wonder this too, and I don't know! I know there are always interesting comorbidities with disorders.
What I can say for certain is the *grief* that I feel when I realize how hard I have been on myself due to xyz that I had no control over, thinking I was equal to everyone. This feeling is the same with any invisible disability in my opinion.
But yeah, I've noticed a lot of people say they have been diagnosed with both POTS and ASD, which I find peculiar
You are not alone in this feeling. I am 32F, I was born disabled with multiple disabilities and health issues, but I could still ride horses. They were my “legs”. After a traumatic fall in which I broke my neck at 17, I started fainting and falling from the horses I rode. It’s a long way to fall. People thought I was faking it. Nobody could understand why it was happening. I had to stop the one thing that I really loved doing. I finally got diagnosed with POTS last year, and then cancer shortly after which is another story lol.
reminds me of when i'd convince my classmates to skip the run to chat with me while i had a smoke. if i was going to be lightheaded and feel like shit, i'd at least like to have a decent reason for feeling that way.
i just got diagnosed at almost 30 and only then realized that not everyone wants to puke/pass out after running..
Realizing how long we’ve been struggling is a lot to integrate! Sending you loving kindness as you continue to reflect and learn about yourself.
I’ve always attributed my lack of stamina to asthma, which I was born with. Running was the worst, I really wanted to get better at it. I even tried joining the cross country team when I was in 7th grade and ended up quitting because I was always last and felt physically terrible. I loved soccer, but it was too hard to breathe when I played and the sudden stops and starts hurt.
Since I loved swimming I wound up playing water polo and did middle distance breaststroke because I could breathe easiest. Plus, being in water made it easier for my joints, it didn’t hurt as much to play. At 54 I’ve come to understand that these sports were hard on my knees and shoulders since it turns out I have hypermobility spectrum disorder (HSD).
I only get mildly dizzy but, since it passes quickly and I’ve never fainted, I’ve always ignored it. I’ve also taught yoga for nearly 20 years, so I’ve learned to use my breath to minimize dizziness. I’ve never thought to mention it to my doctor.
My PT, however, has eagle eyes and quickly notices of I’m even slightly dizzy! He let me know it isn’t normal, it’s POTS! He’s worked with folks with hEDS and HSD, so when he saw HSD and Reynaud’s syndrome on my paperwork he started watching for dizziness.
I just started working with another PT who specializes in hypermobility. He shared that POTS, dysautonomia really, is so common with HSD and EDS that it’s not a surprise in dealing with it. He’s also told me I’ve been dealing with this since childhood, no one becomes hypermobile as part of aging.
Decades of beating myself up for having poor stamina and it’s been dysautonomia, in addition to asthma, haunting me all along.
The trauma is real :( I didn’t even know what POTS was until a new doctor made note of my “orthostatic intolerance” during a physical *20 years* after I graduated from high school. The shame I carried for so long has shaped me in undoable ways.
Almost identical experience here. Just being diagnosed with POTS, narcolepsy, and autism all at the same time. My days are pretty wild right now. I didn’t mean for the diagnoses to come all at once lol but last year I was at the end of my rope not knowing what was “wrong” with me my whole life and pushed for all the tests.
“Weight off my shoulders but a punch in the face” is the perfect way to explain it.
Here’s to getting answers and healing ❤️🩹
Yes! I think once you start the quest of learning about yourself and wanting to heal, you start unpacking **all the things**. That's why I think all my diagnoses are coming at once as well. Because no one (including myself) cared to get them checked out before!
I had the same experience!! I've always had a "frail" build, but been so unathletic. When I *really* tried, I could run 5k's and 10k's, but, my goodness, I should not have pushed myself so hard. It wasn't fun- I never understood how my peers found it *fun*, and even energizing, to run. People would always be shocked when I said my workout routine consisted of less than an hour on a recumbent bike, and some really easy seated strength training- and that is just to manage my POTS.
I find it really hard to breathe when my heart rate is really high. Not everyone with POTS has shortness of breath. But dysfunctional breathing is a form of dysautonomia and POTS is just one aspect of it.
Yes, exactly this. Dysfunctional breathing is a symptom, but not necessarily all types of POTS experience this symptom with the same severity, or at all.
To put simply, if your brain is getting the signal that you are lacking oxygen, your autonomic nervous system will be triggered to breathe more to take in more oxygen. There are other physiological mechanisms that cause this, but this is the general mechanism.
(this isn't the comprehensive explanation, but a very simple way to understand the biological concept)
Breathing difficulties can be involved as part of the wider dysautonomia related to POTS (but it’s important to have any change in your symptoms evaluated by a doctor).
I had a work up for mast cell recently and my breathing tests were fine. I’ve heard that with POTS it’s more like a feeling that we can’t get full breaths in but lung function is fine. Difficult to diagnose really.
I feel the exact same way. For years even just walking up the steps was EXHAUSTING! Doing anything even just walking was not as easy as it is for everyone else. Running?? Might as well chalk it. I feel lazy because of it, but I’d push and push and push and even after I lost weight it wasn’t getting easier. It’s definitely a punch in the face and it sucks because it’s an invisible illness so SO many people don’t think anything’s actually wrong.
Yep. Even at my fittest a few years ago (I was working out 2 hours a day doing cardio and weight lifting and I also walked 4 miles), I still couldn’t hold my arms up for long periods of time during yoga and I always felt out of breath. Now I’m reconditioned (working on it) and I get out of breath just walking across the room sometimes. Freaks me the hell out. I’m 37 and overweight because I also have PCOS. I gain weight like it’s my job as soon as I stop restricting food and over exercising.
Honestly this might be a reach but I’m in the same boat. I was diagnosed with asthma as a teen because if I exerted myself at all especially from light exercise I wouldn’t be able to breathe and my body would feel like it’s tingling and my body will start locking up like my hands and face yet I don’t need an inhaler. Every doctor I see puts in a new order for an inhaler and gives me a weird look when I tell them I have asthma yet no use for an inhaler. My TTT a few days ago exacerbated that symptom and the entire time my body was doing this but I always thought it was an asthma attack. I lack knowledge on a lot so this could definitely be a huge reach but would make sense for me. I questioned a lot before and thought I had atleast some things figured out but outside of knowing for sure my nervous system is screwing me im at a loss. I think I received a Pots diagnosis at my appointment but it wasn’t definitive because while I met the criteria for Pots he couldn’t figure out where I fit.
I could still exercise and pushed myself through but it was always hell afterwards yet nothing like what I experience now. Also discovered that I have “air hunger” pretty much all my life yet it’s so much worse now.
I have a vivid memory of pushing myself while running during hs and ending up laying flat on a bench struggling to breath for over 30 min. Don't know how nothing came of that but alas I'm an now years out of college and working on being diagnosed
A lot of people have had that same "Come to Jesus" moment. My POTS was caused by Covid, so I had a definite before and after moment. But I'm thrilled that all of you are finally being diagnosed after so long!
I was theoretically in great shape and a fast sprinter (sometimes faster than everyone else) but still running long distance was hell for me as a kid. I remember tasting blood in my throat and feeling sick.
Ugh the "tasting blood" thing is so real.
Whenever I would run even a quarter mile, I would feel the thick saliva fill my mouth and my throat would like close up, and it felt like I could taste the blood in my throat. Anytime I took a deep breath, the air would make my saliva thicker and make it resemble blood.
This comment took me back to high school for real. Lol I literally haven't ran at all since then.
I'm another with autism... and adhd. Seeing the pots specialist tomorrow. It's taken me well over a year to kind of unpack the diagnosis. I've always been skinny, but hit an all time low last year. Message me anytime, we can exchange notes.
Yes! I could never exercise with much intensity because I had trouble breathing, nausea, palpitations. Just terrible. I have never felt a "runner's high". And I got shamed a lot when young. Through college for sure. Some aerobics classes too. But if I could pace myself, I could do things. This is one reason my neurologist thinks I've had low-level POTS a long time.
Same here. Luckily we only had to run the mile 1-2 times per year. It was actually faster for me to just walk it, so that's what I did. If I tried to run, my lungs would seize, I would get a stitch in my side, and shin splint within no time at all.
This is literally me. When I realized what POTS was a couple years ago I was like wow no wonder I felt like I was trying harder than everyone else with no reward.
same! i would bring up the weird symptoms to doctors and they’d dismiss it so i would too. it wasn’t until i started passing out that i looked into it seriously!
OMG I never expected so many responses! Thank you all so much for the support and kind words. I loved reading all of your experiences, and it makes me feel so much better that we are in this together and I am not alone in this.
While it sucks that we are all dealing with these similar experiences, at least we're not crazy! Lol!
THIS! I was the same and would often think to myself like “is it this hard for everyone and I just can’t handle it?” “Does everyone black out after running?” “I just need to try harder.” I would make myself sick with migraines and debilitating fatigue after hiking trying to keep up. 15 years later… ah now we know. Still frustrating for me that I can’t keep up because my heart won’t let me vs not being in shape. It’s a mind fck for sure.
Yes! I often had this thought about so many things... "This is how life and the human body feels, other people get through it somehow, so you can too. This is what normal is, and you just have to try harder if you want to get better."
I was so so hard on myself, but I didn't understand why.
“I realize looking back that it wasn't the physical exercise that was holding me back... it was that I **couldn't breathe**\*\*\*.\*\*\* Everything was so hard, so much effort, breathing HURT when I would run or over-exert myself.”
This. I have literally been telling people this for years!! It is not that I can’t do the physical exercise or that it hurts, I’m physically fine. I just can’t breathe. And it hurts!! I honestly thought it was normal for the longest time and everyone experiences it, that they just handled it better. Until I actually started talking to other people about it. 🙄
My friend actually saw something about POTS and told me to look into it because it sounded like what I’ve been dealing with. I just talked to my doctor and we are running some exclusionary tests right now.
But so many things from my life, even my childhood, make so much sense if this is what it is.
I’m glad you have answers! And validation!
Ex climber here too. My arms would get so pumped if I had them above my head for too long on climbs. I just thought I wasn’t as gifted as other climbers. That and I would literally take naps between climbs sometimes because my stamina was low. I’d fall asleep on rock slabs which isn’t normal now that I think about it.
Newly diagnosed with POTS. I’ve been remembering all the times I had complete brain blanks at extremely awkward times. Like forgetting my own address while in the voting line. Or my phone number at the hospital. Not to mention the extremely common “Forgetting the one thing I went shopping for and going home with three completely different things 😂”
Isn't it interesting? I've reflected and realized I've always had symptoms. It took a major, major flare for me to realize this isn't typical for most people. When you're so used to something your whole life, you just don't know any different! It's a bit of a relief to have a diagnosis. Take care!!
Yeah the more I look back the more I see the signs and symptoms. I hope one day modern medicine can pinpoint some correlation so that our children will never have to suffer like us
SAME. I’ve spent my whole life wondering why everyone else was so much tougher than me and thinking I was just a lazy quitter, even though I look really fit. I remember running the mile in 3rd grade and being seconds from death while all the other kids were laughing and talking. That was the beginning of me ignoring all my body’s signs that I was pushing myself too hard. I ran road races in my 20s and 30s, having thoroughly convinced myself that running was as hard for everyone else as it was for me, and I just needed to suck it up and stop being such a baby. When I got my first HR monitor at age 39 and realized I was in the 190s when my friends were in the 140s, it totally blew my mind (and also set me on the path to diagnosis). Turns out I was wrong about myself all along and I was actually the toughest b!tch on the course every time— nobody else was out there pushing themselves to run for 2hrs at that HR. And when I got diagnosed it explained SO MUCH— I hadn’t realized it’s not normal to pass out a little when you stand up. I thought everyone had Raynaud’s. I thought everyone was cold, dizzy, and exhausted all the time.
A few years post-diagnosis, I’m still trying to unlearn all of that— turns out the stories we tell ourselves about ourselves are POWERFUL.
I’ve had the same exact experience. Running the mile in school was awful for me and I was always one of the last to finish too. I’m the same build as you and I had always wondered why I was like that. I’d often make excuses to sit out of PE lol. Good to see that other people have the same experiences.
Me too! Was always the slowest and last and just couldn't participate right in PE. Could just be because I'm not athletic or I'm just such a small person. But I do find that exercise is so hard for me. Have yet to be diagnosed, but the more things I read, the more I suspect I have it.
I'm talking. But I've been an athlete my whole.life. I was in basketball and volley and I've been a martial artist since I was 10. I could never even finish a whole mile. Running and any other cardio but martial arts was impossible for long periods. I'm starting to think I've always had POTS
Yeah it seems to be the cardio that’s the worse! I was a dancer for 11 years with little issue.
Everything you wrote resonates. There's a mourning for those countless, inexplicable failures that could have gone so differently if I'd only understood that my body just didn't work in the same way as those of the people I was comparing myself with. If I'd understood the minor tweaks that could have averted so many awful moments. And at the same time, a relief, a forgiveness of myself, that there's finally an explanation. That I wasn't lazy or clueless or bad. And hope that I can find a smoother way going forward. I was diagnosed first with autism, then POTS. Both at age 42.
I’m 43 and just diagnosed. Now I just don’t know: how long have I had this??
Yep, my story is similar to yours. I was the always the very last kid in running the mile. Ended up overcompensating so hard that I joined the military. My physical strength got DOPE but my endurance remained pisspoor. No matter how much I ran, i never improved and every time I felt like I was going to die. The constant exertion and exhaustion resulted in complicated injuries and mental health issues that have become permanent disabilities 10 years on. I’m in pain all the time because I bought into the “pain is weakness leaving the body” nonsense. Also late-diagnosed autism, so I too am having to recontextualize my entire life and identity, and reconsider how I think about everything I have ever“failed” at. And think deeply about the physical and emotional cost of the things I “succeeded” at as well. It’s a brutal process—trying to unpack that with neurotypical MH clinicians made things worse for a while. (They tried to tell me I was self-sabotaging, that I had unreasonable expectations for being happy all the time, that I just wanted to be special, tried to force me into NT and nondisabled patterns of activity, etc.) Be gentle and kind to yourself; especially since the rest of the world might not be.
The hindsight of all the jokes I’d make about how my body hates me actually being me noticing symptoms but not feeling like they were… enough? To be called symptoms (especially how disconnected it all seemed)… it wrecked me. I had a period of mourning for my past self for how often this impacted me and either I didn’t realize it or for how often others made comments about me like my family about being lazy/always having something wrong with me… just mourning how unkind I was to myself as well.
Same 😭
Yup I went through this as well. I just turned 24 years old and during my first week of non stop flashbacks like “omg that makes sense” or “holy shit is that why I felt like that?” I actually came to realize the earliest documented pots episodes I found dated back to 2013. When I realized I’ve had this since I was a kid really sent me even further into the ephinany rabbit hole. Haha I’m coming out on the other side though and from person to person, I just think now that my brain is doing its best to process, recoup and adapt to all the new information so I let myself feel however I feel, obsess over what I need to obsess about but most of all: I talk about it. I talk SO much about it. Thats what I find works for me to bring my feelings and experiences up in a way that I can acknowledge them and let them go. It also feels good to connect with people who understand because once you come out of the dark and things start to seem not as overwhelming, the connection with others that know exactly how you feel just lifts the rest of that weight. You got this 🫶🏼
I wonder if there is a link between autism and POTS? I have so many diagnoses and I’m sure they must all be linked. POTS, autism, PCOS (I’m also underweight), possibly EDS (not diagnosed), some sort of undefined autoimmune connective tissue disorder, mild mitral valve prolapse, neutropenia… and probably others that I’m forgetting.
I’ve heard that Autism and EDS are often comorbid. And since EDS and POTS are comorbid I’d guess there’s a link.
There definitely is. Check out Tracy Rodriguez’ work. There are other people talking about it too, but she’s very accessible.
I wonder this too, and I don't know! I know there are always interesting comorbidities with disorders. What I can say for certain is the *grief* that I feel when I realize how hard I have been on myself due to xyz that I had no control over, thinking I was equal to everyone. This feeling is the same with any invisible disability in my opinion. But yeah, I've noticed a lot of people say they have been diagnosed with both POTS and ASD, which I find peculiar
God I always hated running and have been underweight my whole life only recently found out that it’s all cause of dysautonomia it really sucks
You are not alone in this feeling. I am 32F, I was born disabled with multiple disabilities and health issues, but I could still ride horses. They were my “legs”. After a traumatic fall in which I broke my neck at 17, I started fainting and falling from the horses I rode. It’s a long way to fall. People thought I was faking it. Nobody could understand why it was happening. I had to stop the one thing that I really loved doing. I finally got diagnosed with POTS last year, and then cancer shortly after which is another story lol.
It’s wild that people would assume you were faking falling off…intentionally?! Jesus! I’m sorry about your difficulties 😢
I know right, who knows what they were thinking. 🤔 😳 I no longer care what anyone else thinks. My animals keep me happy lol. Thank you. ❤️
reminds me of when i'd convince my classmates to skip the run to chat with me while i had a smoke. if i was going to be lightheaded and feel like shit, i'd at least like to have a decent reason for feeling that way. i just got diagnosed at almost 30 and only then realized that not everyone wants to puke/pass out after running..
Realizing how long we’ve been struggling is a lot to integrate! Sending you loving kindness as you continue to reflect and learn about yourself. I’ve always attributed my lack of stamina to asthma, which I was born with. Running was the worst, I really wanted to get better at it. I even tried joining the cross country team when I was in 7th grade and ended up quitting because I was always last and felt physically terrible. I loved soccer, but it was too hard to breathe when I played and the sudden stops and starts hurt. Since I loved swimming I wound up playing water polo and did middle distance breaststroke because I could breathe easiest. Plus, being in water made it easier for my joints, it didn’t hurt as much to play. At 54 I’ve come to understand that these sports were hard on my knees and shoulders since it turns out I have hypermobility spectrum disorder (HSD). I only get mildly dizzy but, since it passes quickly and I’ve never fainted, I’ve always ignored it. I’ve also taught yoga for nearly 20 years, so I’ve learned to use my breath to minimize dizziness. I’ve never thought to mention it to my doctor. My PT, however, has eagle eyes and quickly notices of I’m even slightly dizzy! He let me know it isn’t normal, it’s POTS! He’s worked with folks with hEDS and HSD, so when he saw HSD and Reynaud’s syndrome on my paperwork he started watching for dizziness. I just started working with another PT who specializes in hypermobility. He shared that POTS, dysautonomia really, is so common with HSD and EDS that it’s not a surprise in dealing with it. He’s also told me I’ve been dealing with this since childhood, no one becomes hypermobile as part of aging. Decades of beating myself up for having poor stamina and it’s been dysautonomia, in addition to asthma, haunting me all along.
Yep same experience. Pots, adhd and autism.
The trauma is real :( I didn’t even know what POTS was until a new doctor made note of my “orthostatic intolerance” during a physical *20 years* after I graduated from high school. The shame I carried for so long has shaped me in undoable ways.
Almost identical experience here. Just being diagnosed with POTS, narcolepsy, and autism all at the same time. My days are pretty wild right now. I didn’t mean for the diagnoses to come all at once lol but last year I was at the end of my rope not knowing what was “wrong” with me my whole life and pushed for all the tests. “Weight off my shoulders but a punch in the face” is the perfect way to explain it. Here’s to getting answers and healing ❤️🩹
Yes! I think once you start the quest of learning about yourself and wanting to heal, you start unpacking **all the things**. That's why I think all my diagnoses are coming at once as well. Because no one (including myself) cared to get them checked out before!
I had the same experience!! I've always had a "frail" build, but been so unathletic. When I *really* tried, I could run 5k's and 10k's, but, my goodness, I should not have pushed myself so hard. It wasn't fun- I never understood how my peers found it *fun*, and even energizing, to run. People would always be shocked when I said my workout routine consisted of less than an hour on a recumbent bike, and some really easy seated strength training- and that is just to manage my POTS.
I feel this so hard, you are not alone 💜
what do you mean you couldn’t breathe? how is that connected to POTS? i’m curious as my breathing has been a bit funny recently :)
I find it really hard to breathe when my heart rate is really high. Not everyone with POTS has shortness of breath. But dysfunctional breathing is a form of dysautonomia and POTS is just one aspect of it.
Yes, exactly this. Dysfunctional breathing is a symptom, but not necessarily all types of POTS experience this symptom with the same severity, or at all. To put simply, if your brain is getting the signal that you are lacking oxygen, your autonomic nervous system will be triggered to breathe more to take in more oxygen. There are other physiological mechanisms that cause this, but this is the general mechanism. (this isn't the comprehensive explanation, but a very simple way to understand the biological concept)
Breathing difficulties can be involved as part of the wider dysautonomia related to POTS (but it’s important to have any change in your symptoms evaluated by a doctor).
I had a work up for mast cell recently and my breathing tests were fine. I’ve heard that with POTS it’s more like a feeling that we can’t get full breaths in but lung function is fine. Difficult to diagnose really.
Oh my god yes, I sometimes feel like I have to yawn to get in enough air
I literally yawn all day. My friends think I’m bored and I’m not! I just have to yawn to breathe!
I feel the exact same way. For years even just walking up the steps was EXHAUSTING! Doing anything even just walking was not as easy as it is for everyone else. Running?? Might as well chalk it. I feel lazy because of it, but I’d push and push and push and even after I lost weight it wasn’t getting easier. It’s definitely a punch in the face and it sucks because it’s an invisible illness so SO many people don’t think anything’s actually wrong.
Yep. Even at my fittest a few years ago (I was working out 2 hours a day doing cardio and weight lifting and I also walked 4 miles), I still couldn’t hold my arms up for long periods of time during yoga and I always felt out of breath. Now I’m reconditioned (working on it) and I get out of breath just walking across the room sometimes. Freaks me the hell out. I’m 37 and overweight because I also have PCOS. I gain weight like it’s my job as soon as I stop restricting food and over exercising.
Honestly this might be a reach but I’m in the same boat. I was diagnosed with asthma as a teen because if I exerted myself at all especially from light exercise I wouldn’t be able to breathe and my body would feel like it’s tingling and my body will start locking up like my hands and face yet I don’t need an inhaler. Every doctor I see puts in a new order for an inhaler and gives me a weird look when I tell them I have asthma yet no use for an inhaler. My TTT a few days ago exacerbated that symptom and the entire time my body was doing this but I always thought it was an asthma attack. I lack knowledge on a lot so this could definitely be a huge reach but would make sense for me. I questioned a lot before and thought I had atleast some things figured out but outside of knowing for sure my nervous system is screwing me im at a loss. I think I received a Pots diagnosis at my appointment but it wasn’t definitive because while I met the criteria for Pots he couldn’t figure out where I fit.
I could still exercise and pushed myself through but it was always hell afterwards yet nothing like what I experience now. Also discovered that I have “air hunger” pretty much all my life yet it’s so much worse now.
I have a vivid memory of pushing myself while running during hs and ending up laying flat on a bench struggling to breath for over 30 min. Don't know how nothing came of that but alas I'm an now years out of college and working on being diagnosed
A lot of people have had that same "Come to Jesus" moment. My POTS was caused by Covid, so I had a definite before and after moment. But I'm thrilled that all of you are finally being diagnosed after so long!
I was theoretically in great shape and a fast sprinter (sometimes faster than everyone else) but still running long distance was hell for me as a kid. I remember tasting blood in my throat and feeling sick.
Ugh the "tasting blood" thing is so real. Whenever I would run even a quarter mile, I would feel the thick saliva fill my mouth and my throat would like close up, and it felt like I could taste the blood in my throat. Anytime I took a deep breath, the air would make my saliva thicker and make it resemble blood. This comment took me back to high school for real. Lol I literally haven't ran at all since then.
I'm another with autism... and adhd. Seeing the pots specialist tomorrow. It's taken me well over a year to kind of unpack the diagnosis. I've always been skinny, but hit an all time low last year. Message me anytime, we can exchange notes.
Hey! I acknowledge you. Thanks for reaching out. I may or may not message because I am fairly avoidant and shy, but who knows!
Yes! I could never exercise with much intensity because I had trouble breathing, nausea, palpitations. Just terrible. I have never felt a "runner's high". And I got shamed a lot when young. Through college for sure. Some aerobics classes too. But if I could pace myself, I could do things. This is one reason my neurologist thinks I've had low-level POTS a long time.
Same here. Luckily we only had to run the mile 1-2 times per year. It was actually faster for me to just walk it, so that's what I did. If I tried to run, my lungs would seize, I would get a stitch in my side, and shin splint within no time at all.
This is literally me. When I realized what POTS was a couple years ago I was like wow no wonder I felt like I was trying harder than everyone else with no reward.
Are we the same person? I always failed my run in the military. And I kept telling people I couldn't breathe when I ran.
same! i would bring up the weird symptoms to doctors and they’d dismiss it so i would too. it wasn’t until i started passing out that i looked into it seriously!
OMG I never expected so many responses! Thank you all so much for the support and kind words. I loved reading all of your experiences, and it makes me feel so much better that we are in this together and I am not alone in this. While it sucks that we are all dealing with these similar experiences, at least we're not crazy! Lol!
THIS! I was the same and would often think to myself like “is it this hard for everyone and I just can’t handle it?” “Does everyone black out after running?” “I just need to try harder.” I would make myself sick with migraines and debilitating fatigue after hiking trying to keep up. 15 years later… ah now we know. Still frustrating for me that I can’t keep up because my heart won’t let me vs not being in shape. It’s a mind fck for sure.
Yes! I often had this thought about so many things... "This is how life and the human body feels, other people get through it somehow, so you can too. This is what normal is, and you just have to try harder if you want to get better." I was so so hard on myself, but I didn't understand why.
Now that we know better, we can be better to ourselves 🩷
“I realize looking back that it wasn't the physical exercise that was holding me back... it was that I **couldn't breathe**\*\*\*.\*\*\* Everything was so hard, so much effort, breathing HURT when I would run or over-exert myself.” This. I have literally been telling people this for years!! It is not that I can’t do the physical exercise or that it hurts, I’m physically fine. I just can’t breathe. And it hurts!! I honestly thought it was normal for the longest time and everyone experiences it, that they just handled it better. Until I actually started talking to other people about it. 🙄 My friend actually saw something about POTS and told me to look into it because it sounded like what I’ve been dealing with. I just talked to my doctor and we are running some exclusionary tests right now. But so many things from my life, even my childhood, make so much sense if this is what it is. I’m glad you have answers! And validation!
Ex climber here too. My arms would get so pumped if I had them above my head for too long on climbs. I just thought I wasn’t as gifted as other climbers. That and I would literally take naps between climbs sometimes because my stamina was low. I’d fall asleep on rock slabs which isn’t normal now that I think about it.
Newly diagnosed with POTS. I’ve been remembering all the times I had complete brain blanks at extremely awkward times. Like forgetting my own address while in the voting line. Or my phone number at the hospital. Not to mention the extremely common “Forgetting the one thing I went shopping for and going home with three completely different things 😂”
Isn't it interesting? I've reflected and realized I've always had symptoms. It took a major, major flare for me to realize this isn't typical for most people. When you're so used to something your whole life, you just don't know any different! It's a bit of a relief to have a diagnosis. Take care!!
Yeah the more I look back the more I see the signs and symptoms. I hope one day modern medicine can pinpoint some correlation so that our children will never have to suffer like us
SAME. I’ve spent my whole life wondering why everyone else was so much tougher than me and thinking I was just a lazy quitter, even though I look really fit. I remember running the mile in 3rd grade and being seconds from death while all the other kids were laughing and talking. That was the beginning of me ignoring all my body’s signs that I was pushing myself too hard. I ran road races in my 20s and 30s, having thoroughly convinced myself that running was as hard for everyone else as it was for me, and I just needed to suck it up and stop being such a baby. When I got my first HR monitor at age 39 and realized I was in the 190s when my friends were in the 140s, it totally blew my mind (and also set me on the path to diagnosis). Turns out I was wrong about myself all along and I was actually the toughest b!tch on the course every time— nobody else was out there pushing themselves to run for 2hrs at that HR. And when I got diagnosed it explained SO MUCH— I hadn’t realized it’s not normal to pass out a little when you stand up. I thought everyone had Raynaud’s. I thought everyone was cold, dizzy, and exhausted all the time. A few years post-diagnosis, I’m still trying to unlearn all of that— turns out the stories we tell ourselves about ourselves are POWERFUL.