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Just saying hello

Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
#livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople

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I'm new here!

Hi, I'm Maggie aka ChronicMagnificence. I've been diagnosed with Postural Orthostatic Tachycardia Syndrome, Dysautonomia, & Ehlers-Danlos Syndrome. I'm constantly trying to learn more about these conditions and spread awareness; I'm getting tired of answering, "What's that?" after I name one of my chronic illnesses.
#MightyTogether #Dysautonomia #EhlersDanlosSyndrome #Potsie #Spoonie

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Been a long time.

It’s been a long time since I participated in here. I have POTS, amongst other things and just looking to get to know like minded people. #Potsie #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #AutonomicDysfunction


POTSies and compression stockings

Does anyone else get a little anxious when you cant wear your compression stockings? They help my legs so much but when the weather gets hot or I go somewhere like the beach, or really anywhere that I am wearing shorts or a dress, I can't wear my stocking. And I get a weird feeling of anxiety. They are almost like my security stockings haha. Does anyone else feel this way? I used to take buffered salt sticks to compensate but my stomach has been too sensitive lately. #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Potsie #potssyndrome


Anyone with #PosturalOrthostaticTachycardiaSyndrome ran a fever 🤒 when water in a shower has been run over your head?

Do any of you #Potsie s run a fever when you take a shower? Spike in heartrate? Drop in blood pressure? You think that you may pass out? But, if you take a bath it isn't as bad, but you find your hygiene suffering? I find that even taking a bath, I have to cover my head with water. What do you do to get through this? I'm on medication, but I can't go on a higher dose cuz of side effects. You know how people feel so "refreshed" and "revitalized" after a shower; that's not me. I feel such a itchy and sticky feeling - like I had just gotten back from the gym (and I don't use hot water - so it's not dry skin) - does anyone else have this? or my heartrate goes even higher afterwards and during. It's not when I get my body wet, just my head. Or I will run a temperature about 100°F for no other reason. And no hot water. Does this happen to you, too? I absolutely hate the way that a shower makes me feel in regards to physical symptoms. I hate that I can't take a shower before a doctor's appointment, because then I'd run a fever when I got there and they'd make me get a covid test (which would normally make sense - so I just don't take a chance).

So, who else with #PosturalOrthostaticTachycardiaSyndrome or any other #ChronicIllness has a terrible reaction to water being ran over top your head? Horrible, huh?!

#Anxiety #Depression #PsoriaticArthritis #Narcolepsy #Gastroparesis #sibo #sbbo #ObsessiveCompulsiveDisorder #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #prolactinoma #PolycysticOvarySyndrome #Migraine #SpinalStenosis #SpinalFusion #Lumbarfusion #Potsie #BipolarDisorder #Bipolar1Disorder


Yoga mat?

Hello all! I am new to this group as well as to POTS and I was wondering if anyone uses a yoga mat to carry around with you in case you need to lie down. I saw something about this on a POTS fb group and I though it was a great idea so I was wondering if anyone could give a recamendation for a specific mat if you do use one! Thanks for reading! #POTS #Potsie #advicewanted

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What's everyone's job status?

If you don't mind sharing, who is able to work full time, part time, not at all at this time, remote, or in person? I can never decide if I am pushing too hard or not enough. My job will not let me work remote so I don't know if I can handle being there and it adds massive anxiety. I am currently part time but even that is physically and mentally taxing on me. I love the place and people but I don't know how much to push or if I should just try to find something else that is remote.
#PosturalOrthostaticTachycardiaSyndrome #Anxiety #Depression #Potsie #LivingWithPOTS


Has anyone else experienced this?

Hello fellow Potsie friends 👋🏼
Lately I’ve had this constant feeling of blood rushing to my ears in a pulsing rhythm. It feels a bit like when you’ve stood up too fast and you’re about to pass out. The problem is it’s constantly there, even when I’m sitting or laying down. I was wondering if anyone else had dealt with this and if so how do you deal with and/or stop it ? It’s really getting on my nerves and it’s getting hard to focus. Thoughts?
#PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #Potsie #Dysautonomia #Passingout #ChronicIllness #Dizziness #question #Advice #help #Spoonie #SpoonieProblems


Libre / Free

Even though French is not my first language, I like the French version better, but I also took the time to translate it (by meaning/intent, not literal) into English at the bottom.

J'aime la version française meilleur, mais j'ai le traduit en Anglais en bas de ce post.

Aussi, les gens qui parle Français, corrigez ma grammaire s'il vous plait. Français n'est pas mon langue maternelle; je sais qu'il y a les erreurs.

Si je pourrai, je serai libre.

Ma tête et mon cœur sont en guerre

Et n'est pas comme dans les livres;

Mon coeur n'a pas beaucoup d'espère. 

Mon coeur ne lui donne pas le sang

Donc ma tête ne lui donne pas les ordres.

Il danse de peur et n'est pas obéissant.

Elle s'évanouit parce que le désordre. 

Ce n'est pas ni la vie ni la mort.

Je suis dans le purgatoire.

J'attends pour le résultat en peur

Et déteste mon systèmes nerveux et circulatoire.

If I could be, I would be free.
My head and my heart are at war,
And not as it's been told before:
"Love versus Logicality".

My heart does not feed my head
So my head becomes absentee;
My heart beats in anxiety
And my head pretends that I'm dead.

I am neither living nor dead,
But waiting in Purgatory.
I detest their endless fury
And await the result in dread.

#OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #oh #POTS #Potsie #Dysautonomia #AutonomicDysfunction #cardiovascular #Syncope #RaynaudsPhenomenon #Fainting #Poetry #Poem #poems #poets