Rhyothemis · @Rhyothemis
251 followers · 2847 posts · Server zeroes.ca

@ricardoharvin

"She offered Christopher the simplest of solutions: prescription compression stockings, which she called “garments” to soothe his masculine pride ..."

Compression stockings are similar in principle to the G suits fighter pilots wear to prevent G-force Loss of Consciousness (G-LOC) - if that makes anyone feel better about it.

Another thing that can prevent blacking out is to clench all lower body muscles. It helps to have big glutes and quads. That's what I used to do when I had dizziness on standing problems.

#pots #Dysautonomia

Last updated 1 year ago

ahimsa · @ahimsa_pdx
909 followers · 9429 posts · Server disabled.social

That Stat News article didn't mention ME/CFS.

But I just noticed that one of the links in the first paragraph (on the word debilitating) goes to an article from January about a woman with Long Covid who also has an ME/CFS diagnosis:

‘I want people to see us’: A writer gives voice to long Covid and mothering from bed

statnews.com/2023/01/09/living

#LongCovid #mecfs #pots #Dysautonomia #PEM

Last updated 1 year ago

Janet Logan (she/her) 🏳️‍⚧️ · @janetlogan
489 followers · 3069 posts · Server mas.to

Radio Atlantic: Fatigue Can Wreck You - The Atlantic

"As a medical term, fatigue seems suspiciously unspecific. Is it just the common tired we all feel, but extra? Is it more like a bad, long day? A state of mind? This lack of clarity made me assume that “fatigue” was a medical mystery and thus impossible for doctors to diagnose or treat."

1/2

theatlantic.com/podcasts/archi

#Dysautonomia #me_cfs #LongCovid #fatigue #pem #spoonie

Last updated 1 year ago

ahimsa · @ahimsa_pdx
899 followers · 9254 posts · Server disabled.social

@Linza I have a POTS diagnosis, too.

My first tilt table test did not show POTS - my heart rate did not rise enough. But I got symptoms after 4-5 minutes, passed out after 20 minutes.

I got a diagnosis of NMH, neurally mediated hypotension.

Years later my cardiologist did measurements and POTS was added. I also have ME/CFS diagnosis.

Two helpful videos on Orthostatic Intolerance in ME/CFS:

Part 1: youtube.com/watch?v=X3Ym8rnYk_

Part 2: youtube.com/watch?v=GIkS4w3tIg

#pots #mecfs #Dysautonomia

Last updated 1 year ago

Jahleesu · @jahleesu
278 followers · 1880 posts · Server disabled.social

Der Nachteil daran dass mein Betablocker jetzt meine Tachykardie durch mein in Schach hält ist dass ich mich trotzdem oft richtig scheiße fühle wenn ich aufrecht stehen muss.
Früher konnte ich auf meine Pulsuhr schauen und mir selbst sagen "hey, du hast einen Puls von 160, du darfst dich scheiße fühlen!"
Jetzt ist mein Puls aber nur noch 90 bis 120 oder so,und ich fühl mich aber genau so scheiße. Und mein Gehirn sagt mir ich hab keinen Grund dafür 😬🙈
Fun with und 👍☠

#pots #mecfs #Dysautonomia

Last updated 1 year ago

TrangAston :verified: · @CastlTrAstonDrs
1378 followers · 2908 posts · Server med-mastodon.com
Tom Kindlon · @tomkindlon
701 followers · 1720 posts · Server disabled.social
Tom Kindlon · @tomkindlon
701 followers · 1719 posts · Server disabled.social
Rhyothemis · @Rhyothemis
243 followers · 2649 posts · Server zeroes.ca
ahimsa · @ahimsa_pdx
889 followers · 8862 posts · Server disabled.social

@blogdiva Yep. So many years of neglect. No treatments due to vastly underfunded research.

Many viruses can trigger long term illnesses - COVID, flu, SARS, EBV, etc.

US government ignored the warnings from ME/CFS patients and patient advocacy groups that the pandemic was going to trigger many more cases of ME/CFS, POTS, etc. Several studies show that roughly half of Long Covid cases meet ME/CFS diagnostic criteria.

meaction.net/stoprestpace/

#covid #LongCovid #mecfs #pots #Dysautonomia

Last updated 1 year ago

sensible gremlin tux · @tux_kate
32 followers · 34 posts · Server blorbo.social

kicking me while I’m down today, which makes sense — next monthly injection is on Sunday.

But having to miss tomorrow’s fun plans because I spent today in a foggy disoriented distracted haze of mild pain really just feels bad.

This is a huge improvement over last year! The diagnosis of my and treatment for has helped so much … but being able to make plans and then having to cancel them just plain sucks.

#Migraine #pots #Dysautonomia

Last updated 1 year ago

ahimsa · @ahimsa_pdx
876 followers · 8600 posts · Server disabled.social

@andrewdessler A message for that Washington Post headline writer:

Maybe "your" body can build up a tolerance to heat, but "my" body cannot!

Image description: Headline in the "Climate Solutions" section(!) that says, "Your body can build up a tolerance to heat. Here's how."

#alttext4you #Dysautonomia #pots #orthostaticintolerance

Last updated 1 year ago

ahimsa · @ahimsa_pdx
876 followers · 8600 posts · Server disabled.social
ahimsa · @ahimsa_pdx
861 followers · 8415 posts · Server disabled.social

Scheduled for tomorrow!

Solve M.E. webinar: "The Future of Symptom Tracking"

STAT Health CEO Daniel Lee will discuss an in-ear device that "measures blood flow to the head [and] tracks changes in heart rate and blood pressure trend when users stand up."

Tuesday, July 25, 2-3 PM Pacific Time

solvecfs.org/event/the-future-

#Dysautonomia #pots #mecfs #LongCovid #chronicillness #orthostaticintolerance

Last updated 1 year ago

ahimsa · @ahimsa_pdx
844 followers · 8120 posts · Server disabled.social

@Pawpower
Hi 👋 Hope it's OK to add a suggestion for you 😁

I use ORS (oral rehydration salts) for orthostatic intolerance. I prefer brands that match the WHO (World Health Organization) ORS recipe.

Normalyte Pure is one brand I use - no stevia, no artificial flavors/colors, just sodium, potassium, dextrose. It comes in packets to be mixed with a half liter of water.

normalyte.com/collections/hydr

PS. I'm not affiliated with them, just a customer

#pots #Dysautonomia

Last updated 1 year ago

Marloes · @peanutcheese
210 followers · 636 posts · Server neurodifferent.me

I got myself a Fitbit to keep a better eye on my heartrate and well, if I had any doubt left if I really have POTS...

#Dysautonomia

Last updated 1 year ago

ahimsa · @ahimsa_pdx
835 followers · 8059 posts · Server disabled.social

Recordings from the recent June 29-30 event by NASEM (National Academies of Sciences, Engineering, and Medicine) are now available.

The event was titled:

"Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors"

Scroll down to see links to videos and meeting materials.

nationalacademies.org/event/06

#research #LongCovid #mecfs #lyme #Dysautonomia #multiplesclerosis #chronicillness

Last updated 1 year ago

Anna · @halcionandon
70 followers · 99 posts · Server disabled.social
Rita Portela (parody) · @westernspinster
512 followers · 426 posts · Server zeroes.ca

*Virtual Option* Conference, this weekend, register ASAP.

& disorders are very common in patients - everyone should be interested.

We invite you to join Dysautonomia International for the world's largest conference on autonomic nervous system disorders, July 14-17, 2023 in metropolitan Washington, DC! Guests will enjoy a fantastic weekend of educational seminars, engaging speakers, and social events July 14-16, followed by Dysautonomia Advocacy Day on Capitol Hill on July 17. This event brings together patients, caregivers, researchers, clinicians, industry representatives, and non-profit leaders and government policy makers. In-person and virtual registration options are available.

(Virtual registration includes access to recordings of sessions.)

dysconf.org/

#Dysautonomia #pots #autonomic #LongCOVID

Last updated 1 year ago

Cyrus · @CyruxiME
328 followers · 821 posts · Server toot.aquilenet.fr

I’ve decided to give decaf another try because I miss it too much, so I bought a cheap, small drip coffee maker that fits on my bedside table.

I already feel wired from the cup I just had so I probably won’t be able to sleep tonight (insomnia is why I had to quit), but I hope that I can build a tolerance if I keep at it for a few days. There really isn’t much caffeine in decaf after all…🤞☕️

#Dysautonomia #pots #pwme #mecfs #NEISvoid #coffee

Last updated 1 year ago