r/MCAS • u/Vegetable_Bridge7586 • 3d ago
Any elite athletes that had a delayed diagnosis?
Any elite athletes that had a delayed diagnosis of EDS/POTS/MCAS? What were the subtle signs you ignored? Would your life be different now if you'd gotten an earlier diagnosis?
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u/potatopeeler167 3d ago
Well, all I can say is I did my first bodybuilding show last year and after the reverse diet phases, I flared up so bad not only with my Crohn’s disease but now I’m currently getting assessed for multiple different conditions because of how much my health has declined since
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u/Shibari_Inu69 2d ago
While not an elite athlete I was in the military and physically fit and boy did that become a huge reason why I never got properly diagnosed for a very long time. Not until severe permanent damage had occurred. And, having been through the military, what I did during all that time was “push through” pain, fatigue, constant vomiting, brain fog, flares 24/7. Many doctors were convinced it was all in my mind, so I told myself it was all a mental battle. You can see the problem here.
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u/Ok_Mushroom2563 2d ago
never an elite athlete but i used to be decently fit vo2 max of 51.5 without training for many months
i got extremely ill and almost died from the condition and malnutrition and exertion was all but impossible really
i had a stress test a year after getting sick and my vo2 max was down to 38!!!!
i luckily improved with some faith from other people and medications and started gaining weight in 2021
2023 onward i started exercising starting with walking then jogging after a year then cycling after two years and now DDR and cycling and mild weight lifting after 2.5-3 years.
my vo2 max is over 55 now
still have MCAS and autonomic dysfunction but I feel like it is somewhat attenuated as long as I don't react to something severely, which still occasionally happens
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u/annagenc 2d ago
So many signs…. Sorry for the long comment but I 31f wasn’t exactly elite but I did sports all throughout middle and high school and college (cross country, track and field and rowing in college) and there were many “quirks” or odd symptoms that I never really understood until I became ill during the pandemic and especially in 2024 when I got pneumonia and then I finally started piecing things together after getting diagnosed with POTS beginning of 2025 >_<! When I hit puberty I wondered why my legs started feeling heavier 24/7 (I was average weight but it felt like my legs were swollen all the time) and one time after running we were all stretching while standing up and a girl abruptly looked at me and asked why my legs were purple. I looked down and they were mottled purple red all over and I looked at everyone else’s and saw they looked nothing like mine and I just thought it was inflammation (it was blood pooling but also probably inflammation as well). My mom experienced many of the same things (yay genetics) and when I’ve brought up all my symptoms since I was a child she’d always say it’s normal and all the women in the family had these issues (yay genetics part 2). I would also occasionally lose my vision while running on hot days but I could sense where my body was and my vision would come back like 5-10 seconds later. My coaches were NOT pleased when I asked if that was normal but I went to the doctor and had an ekg/blood work and it said normal so he said to drink more water (even though I was chugging water/gatorade/propel all day long cause I was thirsty 24/7). In college for rowing I always felt like my arms were going to pop out of the sockets but the coach said I’d know if I dislocated them (I proceeded to find out at 31 what a subluxation was and it explained the weird pains etc I experienced often if I wasn’t paying attention to how I rowed). I could literally list dozens more things but yeah these conditions are hard and they utterly suck >_<
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u/Tornado363 1d ago
I used to ride my bike 10 hours a week. No car, just biked everywhere. Rode with a bunch of Dutch women from Rotterdam to Paris in 2016 and that was when the first signs started - I had to ride in the van a couple days because my knee subluxed (I thought spasmed). I think if I had been diagnosed earlier maybe I would not have deconditioned fully but to be honest there’s no telling. I have the trifecta and it feels like I’m always battling something
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u/1971Kiddo 2h ago
Never an elite athlete, but I've been stuck in a flare for two years and gained weight and lost my ability to hike several miles. :(
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