It’s making me kinda sad to see the Italian part of #RaceAcrossTheWorld #RATW 😿 I bloody love 🇮🇹 and would love to go back one day but how, when I can barely manage an afternoon out (a) at all, and (b) without it messing me up for days 😿

#Dysautonomia #POTS #PEM #MCAS #ME/CFS

He is the (or one of the) G.O.A.T.s when it comes to #Dysautonomia, #POTS, #NeuroSjogrens, post-viral and vaccine induced autonomic and small fibre neuropathy, etc, etc, etc. This has been his career for decades, and is VERY meaningful.

#AggressiveRest update:

I find it's easier to keep my body in a state of rest (per Garmin tracker) when I haven't eaten yet.

Not sure what the deal is, but I'm actually hungry now, so I guess it's time to start draining my battery.

#pacing #PwME #MECFS #LongCovid #spoonie #ME #dysautonomia

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms — Tamariz et al "We found that [estimated] blood viscosity was associated with both subjective measures of ANS dysregulation, such as the COMPASS-31 and objective measures such as the presence of orthostatic hypotension or POTS."

From a Nancy Klimas team:

Elevated blood viscosity is associated with dysautonomia in long COVID symptoms

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #dysautonomia #PASC

Lordy ..Alexa's telling me its 22°f in my bedroom tonight. Might not seem too bad for some but for someone with #Dysautonomia in April it means a very unexpected & uncomfortable night 😭 If I thought it was going to be anything like this Id have got the floor fan down Whats happening to our #weather?

Sometimes regulation starts in 60 seconds.

1 minute of diaphragmatic breathing changed my stats in real time:

HR 102 → 96
HRV 34 → 45

Why? Because breath can influence the vagus nerve, heart rhythm, and parasympathetic nervous system.

#nervoussystemregulation
#dysautonomia #potssyndrome

I hate POTS! 💢
I am back on medication for it and still passing out!
What more does my body need?!
I have insomnia and even on medication for POTS, I STILL pass out throughout the day!
This is just so... frustrating...!
😭

#POTS #Dysautonomia #Syncope #ChronicIllness #Disabled

Learning to Live Horizontally - Your Guide to All Things POTS When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.

“Do NOT be afraid to rest. Your heart is effectively running a marathon any time you’re upright - it’s OK to be tired. Give yourself the permission u need to put your legs up & take a break.": buff.ly/pXIv5F2

by @Broadwaybabyto.bsky.social
#POTS #dysautonomia #ChronicIllness #spoonies #disabled

This is a very good and accessible description of #dysautonomia.

It's still 80F in my house, had been for like. Idk two and a half days or something. I have had over 6 liters of fluids today. All heavily salted, ofc. #pots #dysautonomia #help

Thanks to #dysautonomia, if my body decides it's stressed, then it assumes it's being chased by a grizzly... for like 12 hours. Well after the stressful moment has passed, even when I'm asleep.

I do my best to manage it, but there's a limit to how much I can do.

#MECFS #LongCovid #AggressiveRest

Visible Health heartrate graph showing reduced HR

An hour later and I've re-set my nervous system and brought my heartrate back down 👇

My daughter will be joining me in a few minutes and I'll be less distracted by my #Dysautonomia; the nagging discomfort from my recurring tooth infection is an on-going annoyance!

#Pacing for #LongCovid

my power gets shut off tomorrow 😭🥺

lmk if you want content, a date (escort), or just wanna help me stay alive 😭😭

#mutualaid #onlyfans #disabled #epilepsyawareness #dysautonomia #crippled #please

Fact check: true.
#Dysautonomia #POTS

Geräte-Tauchen im Meer lässt meine LongCOVID Symptome/PEM fast verschwinden. Zum dritten Mal. Ich habe LongCOVID. Nicht ME/CFS — das muss ich vorweg klarstellen, weil der Unterschied wichtig ist. Mein Fall ist moderat: PEM, Dysautonomie, eingeschränkte Belastbarkeit. Ich bin größtenteils fu…

Ganzer Artikel: dirkpaessler.blog/2026/03/28/...
#LongCOVID #PEM #Dysautonomia #Diving #HBOT #Research

I accidentally did too much and crashed again, so I'm doubling down. I'm determined to work the rest angle. I never thought it would be this hard to resist productivity.

#ME #PwME #MyalgicEncephalomyelitis #spoonie #MECFS #ME/CFS #dysautonomia

#FirstDoNoHarm #ChronicAllies #CdnEd #Dysautonomia #POTS #MECFS #LongCovidKids #Physio #EducationCanada #InclusiveEducation #SchoolSupport #TeacherPD #TeacherTips

Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

buff.ly/SOlLwKE

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky

Disabled life means waking up to lab results, MyChart messages, appointment reminder calls, and more 🫠

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #Dysautonomia #POTS #PosturalOrthostaticTachycardiaSyndrome

Do you live with Dysautonomia?
DYK: There are over 15 different types!
For support and resources, take a look at @dysautonomia.bsky.social : www.dysautonomiainternational.org
🩵🦓🩵
#dysautonomia #chornicillness #POTS #syncope #health
linktr.ee/TheZebraAlliance

If you have #SevereME, like me, you are valuable however and whenever you can show up

I’ve hosted monthly support group meetings for Iowa #dysautonomia and #EDS patients for years, it takes a lot, can’t always do it, but everyone is grateful for these spaces no one else provides

a person wearing a mask and a party hat is laying on a shark blanket ALT: a person wearing a mask and a party hat is laying on a shark blanket

To whoever added POTS to the simulation, please get rid of it in the next update

Sincerely, a chronically ill otherkin with POTS

#POTS #Dysautonomia #Otherkin #furry

I’ve been making big batches of strawberry banana smoothies and freezing them in single-serve mason jars, (saving my life this flare). Tonight I remembered I still have granola I made so I threw it on top of my smoothie and now it’s a parfait! 😁

#dysautonomia #lupus

I talk pretty openly about my health journey and it’s been a long time since I updated so I’ll drop some updates here (original thread quoted).

On the physical health front, I’ve been disgnosis with #PoTS with #Dysautonomia, which has taken me down a rabbit hole of self discovery (cont in replies)

The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

buff.ly/UPemeY6

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

I miss this version 🙁

#hEDS
#dysautonomia

Lean In! #chronicpain #anxiety #pain #panicattack #spoonie #fibromyalgia #chronicfatigue #painrelief #chronicpainwarrior #spoonielife #mindbody #mentalhealth #ibs #migraines #healing #neuroplastic #painmanagement #recovery #disability #crps #health #depression #backpain #dysautonomia #eds #pots

I got COVID on April 22, 2022. Earth Day! Like millions of others, a mild infection developed into #LongCOVID with #Dysautonomia #MECFS. My life is different now, learning to live with disability & invisibility. The world is so beautiful, I mask because I want to see more of it.

#LongCOVIDawareness

Today is #LongCovidAwarenessDay. Sending love to all my fellow #Dysautonomia #ME/CFS #LongCOVID friends.

Good news: meds & PT are helping me and there’s lots of great research.

Bad news: there is still no diagnostic test, no cure, no treatment.

The only way to avoid Long COVID is to avoid COVID!

Photo of some of my medications for treating Long COVID and related dysautonomia, with my 4 weekly medication boxes full of pills, sitting on top of today’s New York Times. It’s Sunday, March 15th and we’re at war. No mention of Long COVID in the paper. I wrote LONG COVID AWARENESS DAY in sharpie at the top of the paper.

Photo of me in an airport wheelchair. I’m wearing a forest green face mask, green hoodie and holding my book bag and green blanket on my lap with hands resting on the handle of my walking stool. The round sticker in the middle of the seat on my stool says LONG COVID SUCKS One of the best things you can do to support people with Long Covid is wear a mask, ideally a respirator like an KN95. Masks break chains of transmission. They prevent infection. A mask might just save your life, or your loved one.

Today is #LongCovidAwarenessDay

Good news: meds & PT are helping me and there’s lots of great research.

Bad news: there is still no diagnostic test, no cure, no treatment.

The only way to avoid Long COVID is to avoid COVID!

Sending love to all my fellow #Dysautonomia #ME/CFS #LongCOVID friends.