r/Raynauds • u/woomymoment • 1d ago
it's been 5 years, 5 painful scared years of this. i hope to at least find people who understand.
edit: i should add i'm currently 24, and i was 19 when all this started.
5 years ago, in the span of only 2 weeks, i went from perfectly fine circulation to such awful cold intolerance my hands were never warm, i'd need blankets all the time, and my blood did nothing but pool or freeze up. i told my mom (only way i could get medical care) i was concerned about this and she told me i was just lazy, and this is just from laziness. several times this would happen.
for 4 years i had to shut up for good about this, cus pleading for help never got me anywhere.
i'd been through mental loops all the time trying to figure out what's wrong with me, and why several-hour-long walks never helped, let alone why this started AFTER i started taking said walks. you'd think if it were laziness it wouldn't start the year i start fixing my exercise, right?
i've always spent autumn and winter bundling up all the time, even in a well heated home. with a plug-in heater, i don't notice a difference until it's too hot, and then i'm melting.
sometimes it'd get so bad i'm crying myself to sleep, cus i'd be so cold, and especially my feet, and no matter how tight i curled up, or how many blankets i had, my feet would stay so cold they hurt for at least an hour.
in winter, the moment i get out of bed i'm shivering. imagine jumping full-body into an ice bath, that's what it feels like. same with getting out of the shower, i loathe the moment i have to leave the bathroom since i know i'll freeze and stiffen up bad.
4 years later i finally convinced my mom to get me a doctor, partly cus i had finally gotten a job and finally had even a little independence from her. doctor has concluded it's raynauds, though it feels so much worse than that, but i go along with it cus google throws me into panicked spirals all the time. only bad thing on my blood tests was vitamin D and dehydration, both of which have been resolved, yet not my circulation.
another year later, i have a checkup in november or december i assume? but the cold weather is finally starting to hit us and it's hit me like a trainwreck. thank god i got a heated blanket, but dude as i type this my feet are still cold, an hour after getting settled under this blanket. my feet are making the blanket itself lose heat in those spots, i have to shift it around constantly for the heat to actually reach my feet much.
life story of a tangent over though, i just feel so frustrated. it's just frustrating, having to spend every waking second of the winter either overly physical, or bundled up in 3 layers at a time. every year it's been this way. and even then exercise still just pools my blood straight down, i'll be blunt and say my tits were cold till about right now too just cus i went on one of my daily 1 hour walks (usually two walks, it's for my dog). hard exercise makes my extremities hot as an oven, and every single other inch cold. make it make sense it drives me so mad!!
i hate being like this. sometimes i wish my mom was right about it being laziness, solely for the fact that if that were true, i would've easily exercised it off by now. 5 years of this shit, i'm tired! i don't wanna be cold and achey all the time every single winter! fuck dude even sometimes in the summer i'll need long sleeves or a blanket. it's actually insane.
i just want some sympathy, some understanding, even if this isn't actually raynauds, i've just not a clue what else it could be. i feel so alone and frustrated.