#posturaltachycardiasyndrome | Explore Tumblr Posts and Blogs

thelupuslady · 1 year

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#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #ehlers danlos awareness #ehlers danlos life #systemic lupus erythematosus

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trixree · 10 months

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Can folks do me a favor and circulate this post widely to people with POTS (Postural Orthostatic Tachycardia Syndrome)? I've got a question.

Bonus info: About a year ago, I lost my appetite completely and have been dealing with chronic, debilitating nausea (but rarely ever puking) for about a year and a half. I got diagnosed with POTS 3 years ago and take ivabradine daily for my tachycardia. All standard GI exams (colonscopy, endoscopy, gastric emptying study, full body CT with contrast) have come up perfectly normal and my IBS-C medication does not impact my nausea at all; it's equally bad when I take those meds as when I do not take those meds (constipation does not seem to be the cause of the nausea).

At my last electrocardio appointment, my doc said that colloquially this is a problem for POTS people. He said we don't know anything else. He said "sorry. Hang in there." This is ruining my life, so please throw some data at me. I want to have NUMBERS for my GI doctor at my next visit.

#trixree speaks #POTS #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #reblog me pls #tumblr polls #and please add your notes in the tags/replies

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hellyeahsickaf · 3 months

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It's funny, if I could snap my fingers and be able bodied I would in a heartbeat. But that thought is also scary. I've been sick for so long that I don't think I know how to be a person.

I never fully had that transition from a child to a capable and independent adult, I was sick during those years. Sure I have my own responsibilities but I don't know what I'd do if I just woke up feeling fine. I think I also can't imagine a life where nothing in my body is holding me back. If not pain then it's my mental illnesses and shit.

Without suffering who am I? It's all I know. Not because I "want to be a victim" but because for as long as I can remember something's been wrong. If nothing's wrong what am I supposed to do or focus on? My life is appointments, medication, surviving, managing symptoms, trying to navigate being disabled in a world not made for me. I don't know how to be anything but this.

#chronic pain #chronic illness #disability #cfs #fibromyalgia #chronic fаtiguе ѕуndrоmе #actually disabled #spoonie #me/cfs #cfs/me #long covid #postural orthostatic tachycardia syndrome #posturaltachycardiasyndrome #cripple punk #cripplepunk

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webkinzpossum · 1 year

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i’m a medical mystery

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reynardmuldrake · 5 months

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POTS: maybe if u wear compression tights u won’t pass out and u can get up and like go to bathroom or smth

autism: if u try it I will scream

#disability #autism #pots #postural orthostatic tachycardia syndrome #text #hoping the gatorade helps enough to allow me to go pee when it inevitably forces the very issue #(of having to pee)#chronic illness #chronic fatigue #chronically ill #disabled #posturaltachycardiasyndrome #potsie

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justsomerandomgay · 5 months

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i am so sick of being sick.

#me when my chronic illness makes me ill :0 #my illness is chronic but this ass is iconic #the chronicles of illness #chronic illness #chronically ill #chronic pain #chronic fatigue #pots syndrome #potsie #potsawareness #pots #postural orthostatic tachycardia syndrome #posturaltachycardiasyndrome #dysautonomia

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countfagula · 9 months

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Happy Disabled Pride!! As someone with multiple disabilities it can be hard to be seen but I’m trying my best!!

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chronically-not-okay · 10 months

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I’ve been sick for about ten years and there hasn’t been a day my chronic illness hasn’t gone out of it’s way to humble me

Like no I don’t have a ego I faint when I stand to fast and my worst enemy is water consumption

#gastroparesis #amps #amplified musculoskeletal pain syndrome #pots syndrome #posturaltachycardiasyndrome #fibromyalgia #chronic migraine #chronic migraine disorder #chronic illness #spoonie #out of spoons

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artifactseeker-myr99 · 1 year

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Uh, so I kinda hope this reaches the POTS community and other people who might be able to give me tips.

Call-out to all the POTS/ CFS goths, I suppose

So I’m early 20’s, moved away for college, blah. I have been alternative and punk-ish for years but stuck with bright colours and pastels. But I never got to have my “emo-phase” while stuck with my parents. Friends have been encouraging me to finally “dress the part”.

And I did a shopping haul and got myself a completely black selection of shirts to add to my otherwise bright and colourful wardrobe.

The thing is, today was the first sunny day of this year and I was sweating not even halfway through my errand. I am still dressed in brights and coloreds. (Needed my sunglasses a few times already because light sensitivity (AuDHD), migraines and bright pavement are a great combo /s)

So how to I mesh dark clothes (punk/ goth/ alternative) with my cardiovascular weakness/ orthostatic hypotension?

The POTS community and CFS community on here have helped me before and I would like some tips what I need to pay attention to in terms of managing symptoms when I actually pull through with dressing mostly black throughout the summer.

I’m definitely stocking up on electrolyte drinks and mineral supplements again. But I figured summer as well as black clothes require some more precautions so I don’t keel over leaving a lecture hall.

#potsie #pots syndrome #me cfs #invisible disability #cardiovascular restrictions #light sensitivity #lightheaded #brain fog #chronically fatigued #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #chronic fatigue #chronic illness #disability punk #disabled punk #postural hypotension #orthostatic hypotension #dysautomnia

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thelupuslady · 1 year

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💚

#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #ehlers danlos zebra #ehlers danlos syndrome #ehlers danlos awareness #lupus awareness #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome

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trashbirdthoughts · 9 months

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Guess who fucked up at the gym and flared their body.

This silly goose!

#196 #196 campfire #rule #196archive #196 migration #i’m so tired #pots #posturaltachycardiasyndrome #fuck pots #disabled #invisible disability #chronically ill #chronic pain #chronic migraines #crps/rsd #fibro things #fibro problems

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consider-your-potatoes-mashed · 8 months

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Fuck heat intolerance and exercise intolerance. I cant fucking sit without sweating my ass off and having a high heart rate, and when I just walk i end up dripping and with an extremely high heart rate. The fuck is up with that shit.

#disabled #disability #actually disabled #physical disability #chronic illness #pots #pots syndrome #hyperhydrosis #sweat #sweating #fuck this #postural orthostatic tachycardia syndrome #posturaltachycardiasyndrome #posturalorthostatictachycardiasyndrome #exercise #exercise intolerance #heat #heat intolerance

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system404singletnotfound · 9 months

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I have been working on a discord server for people with POTS! (Postural orthostatic tachycardia syndrome.) It’s for those with POTS or those supporting people with POTS to make friends and have support.

#pots #posturaltachycardiasyndrome #chronic illness #chronic illnesses #disability #dysautonomia #pots syndrome #discord #discord server #chronic illness discord server #pots discord server

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aelianated-star · 10 months

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Nothing like almost passing out while peeing to humble you

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luuniex51 · 6 months

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I’ve always been a sick kid.

Chronic illness is never for the faint of heart.

I was never happy to have school staff know me by name,

Or to never play with kids my age,

But kids my age never were able to embrace the beauty of life.

They never had to.

While they were running around, as my heart skipped beats,

I’d stare at pores in leaves.

I’d appreciate the breeze in the air,

I breathed In every breath like it could have been my last,

Kids my age never had to worry about that.

When you’re sick you learn to appreciate plants more than people,

You realize how much more animals affect humanity than we do ourselves.

You’re able to take in life more,

Realize rain is just as beautiful as sunlight.

You appreciate living more than you should,

Because life within itself is a truly extraordinary thing,

And we,

Ourselves are a beautiful product of life,

Sick,

Or not.

#poetry #original poem #writerscorner #writing #poems and quotes #poets on tumblr #chronically ill #chronic illness #posturaltachycardiasyndrome

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fear-ze-queer · 1 year

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live footage of me learning more and more of my daily experiences are actually symptoms of my disability

#pots syndrome #potsie #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #dysautonomia #actually disabled #parker shut up #glad to know im not just weird tho lol

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