posturalorthostatictachycardia

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Experiences pushing yourselves despite POTS?

Ok, second question... and I won't post again for a while; no worries! Just because I'm new here.

Hey all! Just wondering, what are your experiences pushing yourselves with POTS even when it does not seem (or feel) prudent?

I'm moving to a new, massive city by myself and keep thinking, what if I have an "episode season" again... and nobody to help me?

My thought process is... this is not lethal (or so I was told); what if I just tried to live a normal life when I'm in an episode-season? I'm always taking care of myself, afraid of fainting and not wanting to feel uncomfortable (dizziness, nausea, headaches, shortness of breath). But... if I just push through, how bad can it be? Is there something else that can go wrong besides fainting* and pain that I should keep in mind?

*I will not be driving... and that's my biggest concern.

Thank you!!!

#POTS #AutonomicDysfunction #posturalorthostatictachycardia

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Recommended POTS Book

Hey y'all! if you're new to the POTS diagnosis, or struggling with recovery, I CANNOT recommend this book enough. It's called "Tired Teens - Understanding and Conquering Chronic Fatigue and POTS" written by Dr. Philip Fischer. He explains the mechanism behind the symptoms, real ways to combat them, stories of patients, advice from nurses, what it's like to be seen for POTS, which medications are prescribed and why, and so much more helpful information. He is/was an autonomic specialist at Mayo Clinic, and just published it in 2021 as a compilation of his research and experience in a format that's accessible to anyone - you don't even need to take a class in medical jargon beforehand ;) It's also a great book to help friends and family understand the reality of the "invisible disability". I felt so seen and understood and it certainly was the kick in the pants I needed to get serious about exercise, water, and salt. Cheers!

#posturalorthostatictachycardia #POTS #LivingWithPOTS #ChronicIllness

10 reactions 3 comments
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Infections and Insomnia

Hey, everyone. I hope you're all doing well!

I just had a question to ask...

So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at 40.0.0.2 degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

Have a great day, everyone!

#posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

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POTS, Acrocyanosis, and Erythromelalgia

If you have Acrocyanosis or Erythromelalgia, do you mind sharing what it's like for you?

If your feet turn blue, is it painful?

If your skin flushes, is it always in the same places?

What helps alleviate your symptoms?

If I stand still in one spot for 5-10 minutes, my feet burn like a thousand angry ants are attacking. They also get red with purple-ish splotches up to my knees. Sometimes my hands will subsequently get puffy and red (with painful burning) and my face will flush and get hot with distinct patchy-ness. It subsides with compression, laying down, and going out into cold weather.

I assumed it was the typical "blue feet" associated with POTS (and wondered if the flushing/puffy could be MCAS!?) but I just learned about erythromelalgia and it seems like it could be a potential fit for the symptoms.

I plan to bring it up to my doctor but wanted to get a read on the real-person experience of each condition.

#POTS  #Erythromelalgia  #acrocyanosis  #LivingWithPOTS  #posturalorthostatictachycardia  #ChronicIllness  #MCAS #Dysautonomia  #AutonomicDysfunction

7 reactions 2 comments
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I really hate having POTS.

My sister and I recently had a discussion about my Postural Orthostatic Tachycardia Syndrome... We've become quite close since she became pregnant and gave birth to my nephew in 2021. She knows how much I hate that my POTS limits what I can do (especially when it comes to my nephew) and how exhausting it can be.

The other day she was asking me if there's a way to cure my POTS and the Dysautonmia. I explained to her as best as I could that there isn't a cure, but there are some things I can do (and have been doing) that will lessen how much it wrecks my life. Like strengthening my leg muscles, increasing my salt intake, getting up slowly and so on...

Yesterday afternoon I was hit with a pretty bad migraine so I went to lie down in my room with my blackout curtains shut to keep out any light. Not long after I'd put my head on the pillow, I suddenly really needed to pee. So, obviously, I got up quite quickly.

Next thing I know, I can hear my mum and sister shouting, trying to wake me up - I'd fainted (not for the first time). As I came around, I could feel that something in my left elbow was really sore and burning. When they finally helped me up, they started freaking out. I was still a little out of it but when I looked down, my arm was covered in blood, as was my top and the rug I'd fallen on.

Turns out, there was a small plate on the edge of my chest of drawers, by the TV, and we think that as I'd fainted and gone down, I'd knocked the plate to the floor, it smashed, as as I landed, it sliced into my arm in two places. As they tried to clean me up, it really fricking hurt. While we were waiting for a friend to take me to hospital, my nephew kept toddling over and handing me his favourite toys, and I just didn't have the energy to play with him and his bottom lip started wobbling. It broke my heart.

Anyway, they got me to the Minor Injuries department nearby. I had to have nine stitches, then some antibacterial squares covering each wound, then a dressing, and then a bandage to keep it all in place.

I felt awful, and I wanted the ground to swallow me whole. I hate this stupid condition. It's embarrassing and it's dangerous. POTS has also caused me to break my wrist and fracture one of the long bones in my foot before, by fainting at the wrong time. Admittedly, I don't think there's a way to faint at the -right- time, but you get what I mean.

I guess I just really needed to rant a bit. I'm feeling very sorry for myself. Thank you for listening, though.

#chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #POTS #EhlersDanlosSyndrome #EDS #InterstitialCystitis #NAFLD #LiverDisease #Diabetes #BPD #Depression #Anxiety #GERD #IBS #Ranting

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What's Your Quirky Health Habit?

We all live with different quirks, whether it be physical or mental health problems, there's a lot to navigate! So my question is - what is a funky health quirk you have?

I'll go first. Sometimes when I feel like I'm going to pass out, I look at myself in the mirror because I want to see what I look like when I black out. Not that I'd even be able to watch it happen....because that's not really how passing out works. But still. I'm intrigued.

Another one - when I have to take salt tablets for my POTS, I LOVE sucking on them. So much. They are delicious. I feel like a cow, licking a salt block but I don't even care. Bon Appetit.

So how about you? Any funky quirks or confessions?

#Spoonie #ChronicIllness #posturalorthostatictachycardia #POTS #MentalHealth #Anxiety #Depression #PTSD #PanicDisorder #Dysautonomia #Therapy #MyCondition #LivingWithPOTS #selfcare #Recovery

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I feel weird...

So, I have quite a few chronic health conditions, but the two that give me the most pain are Ehler's Danlos Syndrome and Interstitial Cystitis.

As a result of this, I live in pain every day of my life. But I have good days and bad days. I have flares.

Today, strangely, is a very good pain day. It's nowhere near as far as it usually is. If I were to put it on a scale with one being the lowest and ten being the absolute worst... I'd give it a 3. On the average day, I tend to be around 5 or 6. So being feeling like a 3 is... Weird.

I'm so used to the level of pain I'm usually at. But today I feel so strange. It feels like something isn't quite right and it honestly makes me feel very nervous. And I have no idea why. I feel ridiculous.

Does anyone else feel like this when their pain is better than usual? I feel like an idiot.

#chronicillnesswarrior #ChronicPain #POTS #EDS #EhlersDanlos #posturalorthostatictachycardia #InterstitialCystitis #BladderPain #Jointpain #IBS #cramps #NAFLD #LiverDisease #Depression #Anxiety #BPD #Weird

26 reactions 15 comments
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Shoutout to the spoonies who use compression garments!

I've just started wearing 30mmHg waist-high compression, and it's CRAZY how much effort it takes to get the darn things ON! I can't help but laugh as I wrestle myself into them. "I don't always exercise, but when I do, it's the 30 minutes of trying to put on compression pants". Haha. Although in all fairness, compression has been INCREDIBLY helpful for my POTS symptoms. And if I'm not mistaken, it has also been excellent for feeling secure (gotta love that PTSD, Panic Disorder, and Depression). Overall 10 out of 10, even if it takes a whole spoon to get into them.

#compression #ChronicIllness #posturalorthostatictachycardia #POTS #spoons #SpoonTheory #anxeity #Depression #PanicDisorder #PTSD

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