#dysautonomia
Trying to balance weight from a necessary high sodium #POTS #dysautonomia diet (with lymphedema from #EDS #MECFS, and disability exercise barriers) is tough
I may experiment with more sparkling water and less salts, see where it gets me!
Ahh, coat hanger pain. Neck and shoulder. It's upside down time, aka leg drains, aka feet up on the wall #POTS #dysautonomia
More on the feet up trick here: www.instagram.com/reel/C6e7z1n...
I do not get numbness or pain from this, ymmv, but it immediately helps w the coat hanger pain
DISCLAIMER: I am 💯 pro-vax. Even though Pfizer mRNA vaccine/Moderna bivalent f*cked me up big time #dysautonomia
It just seems to have a woefully low success rate to have that label. Obvs it doesn’t stop transmission and transmission is a herd of elephants in the (unventilated) room, but still 🤔
Eines der skurrilsten Dinge an #pots, #mecfs, #dysautonomia:
Der nach-dem-Essen-Schweißausbruch, als wäre man grade einen 5k gelaufen.
😳😬😳😬😳
(ctd.) The number of people living w #MECFS, #LongCovid and #dysautonomia has grown, so in case it can be helpful to anyone, I wanted to re-share the article that I worked on for TIME about life w #erythromelalgia, which more people are now experiencing. time.com/6257668/man-... 2/2
I Feel Like I’m Burning Alive. It's Hard for People to Believe Me
"Erythromelalgia is only unimaginable until I tell you my story. And it is only unbearable if there is no one to listen."
time.comQuick question: #POTS recurrent face swelling is driving me nuts. Any way to get our massive hydration and salt in without the swollen face? Anyone? #dysautonomia #NEISvoid #chronicillness
Thought I'd seen it all by now, but pretty sure I met the world's most awful cardiologist today. Medical gaslighting at its finest.
Pretty sure he knows how awful he was, deep down. After I walked out, he didn't charge us for the appointment.
#POTS #dysautonomia
There is still time to advocate for this and it would be much appreciated if you did. Only takes a minute or two. Thank you.
#dysautonomia #LongCovid
On Etsy as a sweatshirt, t-shirt, and hoodie: tinyurl.com/5y7mwapz
#Pots #potssyndrome #dysautonomia
This confirms what I was afraid of. #dysautonomia
www.sciencedirect.com/science/arti...
Impact of COVID-19 infection on baseline autonomic symptoms in patients with preexisting postural tachycardia syndrome and orthostatic intolerance: A retrospective study
Postural orthostatic tachycardia syndrome (POTS) and dysautonomia following a SARS-CoV-2 infection have been recently reported. The underlying mechani…
www.sciencedirect.com
The other reason I was taking progesterone-boosters in the first place is that many studies show it is neuroprotective in people with neurodegenerative disorders: #pwME #dysautonomia #POTS #MECFS #LongCOVID #SciSky 🧪
pubmed.ncbi.nlm.nih.gov/27262161/
Developmental and Functional Effects of Steroid Hormones on the Neuroendocrine Axis and Spinal Cord - PubMed
This review highlights the principal effects of steroid hormones at central and peripheral levels in the neuroendocrine axis. The data discussed highlight the principal role of oestrogens and testoste...
pubmed.ncbi.nlm.nih.gov
Here's maybe why... progesterone levels drop, decreasing blood volume BEFORE the period starts. Whaddaya know, #NEISvoid: we discovered/rediscovered a thing. (5/5) #pwME #dysautonomia #MECFS #LongCOVID #SciSky 🧪
www.ahajournals.org/doi/full/10....
Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome
Approximately 500 000 American premenopausal women have the postural orthostatic tachycardia syndrome (POTS). We tested the hypothesis that in POTS women during orthostasis, activation of the renin-a
www.ahajournals.org
In honor of my fourth covidversarry:
"drain"
soundcloud.com/bleuefish/dr...
best on headphones
don't blow yer speakers with this one kids
#sub
#EDM
#bass
#longcovid
#dysautonomia
#POTS
#PASC
#PsyPhonk
#Phonk
#Grime
#DnB
#glitch
#trap
#bloosic
My mom and my cousin made this shirt for me for my #dysautonomia lol. I love it so much
#chronicillness
#disability
#POTS
Have you heard of #dysautonomia? Most people are unaware of this condition, despite the fact that it affects more than 70 million people worldwide. Now that #pwLC are also being diagnosed with #POTS, it is receiving more attention! Learn more👇🏽🥴
rthm.com/articles/wha...
New US research using subjects with a variety of illnesses:
Mismatch between subjective and objective #dysautonomia
Free fulltext:
www.nature.com/articles/s41...
MedSky🧪#IDSky #CardioSky🫀 #LongCovid has emerged as an important area of clinical focus While this persistent syndrome spans multiple organ sys , #cardiovascular complications w most prominent features #myocardialinjury, #heartfailure, #arrhythmias, #vascularinjury/#thrombosis & #dysautonomia.
2023 was the year I uncovered my internalized #ableism & I intent to make 2024 the year I LET THAT SHIT GO #chronicillness #disability #adhd #autism #longcovid #pasc #mecfs #dysautonomia #axspa #psoriaticspondylitis #fibromyalgia
Another tip for my #bedbound & #dysautonomia friends: select colours & sizes of “Simple Modern” oversized water bottles w straws (Stanley knockoffs) also on sale on Amazon.ca & they are compatible w Stanley accessories like plates & phone holders to attach to bottle
2/
“In this Review, we define [Cardiovascular Autonomic Dysfunction] & its major forms that are encountered in #postCOVID19 syndrome, describe possible CVAD aetiologies, & discuss how CVAD, as a component of #postCOVID-19 syndrome, can be diagnosed and managed”
#LongCovid #PwLC #POTS #dysautonomia
Cardiovascular autonomic dysfunction in post-COVID-19 syndrome: a major health-care burden
www.nature.com/articles/s41...
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 #novid #CovidIsNotOver #CovidBrain #dysautonomia
1/
Cardiovascular autonomic dysfunction in post-COVID-19 syndrome: a major health-care burden - Nature ...
Cardiovascular autonomic dysfunction (CVAD) is a malfunction of the autonomic control of circulatory homeostasis and is an important component of post-COVID-19 syndrome. In this Review, Fedorowski and...
www.nature.comIf you are privileged enough to have access to technology & some income to cover subscriptions, I recommend three tools to help cope with #mecfs #fibromyalgia #dysautonomia #longcovid #adhd & others 🧵
This question is only for ppl w #mecfs #longcovid #dysautonomia & other #disabilities (including #neurodivergence):
Do you ever feel guilt & shame when resting & stress reduction improves your symptoms? I’ve internalized the idea that if my symptoms aren’t super high, I’m being lazy.
This question is only for ppl w #mecfs #longcovid #dysautonomia & other #disabilities (including #neurodivergence):
Do you ever feel guilt & shame when resting & stress reduction improves your symptoms? I’ve internalized the idea that if my symptoms aren’t super high, I’m being lazy.
📍Kurze Erinnerung:
Ab heute kann #PoTS in Deutschland mit der ICD Schlüsselnummer G90.80 von Ärzt*innen angegeben werden.
www.pots-dysautonomia.net/pressemittei...
#POTS #Dysautonomie #dysautonomia #MECFS #EDS #SFN #Sjögren #Postcovid
ICD-10-GM-Code PoTS G90.80
Posturales Tachykardiesyndrom erhält Kodierziffer in Deutschland in der ab 2024 gültigen ICD 10-Version
„PoTS und andere Dysautonomien e.V.“ erreicht großen Meilenstein für die Patientenverso...
Finding it really hard to accept that I’m back to a point with my #LongCovid /#mecfs / #dysautonomia where if I have a shower, that’s the only thing I’ll be able to do that day.
#NEISVOID
Have spent three months trying to get Blue Cross to pay for a visit for the only neurologist in town who does #dysautonomia and was just denied because they found a cardiologist who treats the associated heart issues, so I am now trying to explain that that's a completely different kind of doctor.
Looking for studies about the suspected impacts of Long Covid on ADHD & autism. Pls circulate widely to gather as many as we can (if they exist). TIA
#LongCovid #LongHaulers #ADHD #MedTwitter #autism #neurodivergent #mecfs #neisvoid #chronicillness #pwd #Disability #dysautonomia
This is a friendly reminder that you can do all of the correct things in the correct order and still black out! Don’t be hard on yourself #POTS #dysautonomia
2/
“(Contd) Cardiac atrophy, as has been previously reported in association with other forms of #dysautonomia, is a feature of #LongCOVID and correlates with reductions in physical activity levels and worse fatigue.”
Had a blood draw last week. Was barely able to whisper, “I need to lie down” by the end. Frowning, she said, we have no place to sit. I slithered to the cold, dirty floor to rest. This medical card rocks! #dysautonomia #LongCovid
That devastating feeling of waiting years to see a renowned #POTS specialist — and when the day finally comes, you find yourself less impressed with them than your last cardiologist who barely even understood POTS. Also, they'd never heard of #MEcfs 😒🫠😮💨
#disabled #dysautonomia
My adorable compression socks and tights arrived today and I think they are helping my heart rate when standing up! I know that’s what they’re meant to do but somehow I didn’t believe it. Any #LongCovid #dysautonomia #POTS folks out there with compression love story to share?
OMG ich war gestern bei einer neuen Ärztin und sie hat sich mega viel Zeit genommen für mich und hat nen Verständnis für meine ganzen Erkrankungen!
Die Praxis mega nett, ich konnte im Liegen warten, habe 2 Decken und nen Fenchel-Anis-Kümmel-Tee bekommen. Sweet!
#mecfs #eds #sfn #dysautonomia #mcas
Thank you! I have #LongCovid which came with #dysautonomia & #mecfs for me, so I’m wondering if this feed will pull the same things that are pulled by your #LongCovid & #mecfs feeds (I’m new here lol)
I’m grieving the loss of a body I can trust and struggling with what it means for the future.
#chronicillness #ChronicPain #heds #hypermobility #ehlersdanlos #dysautonomia
hypermobilephysicist.com/i-miss-havin...
I Miss Having Faith in My Body - The Hypermobile Physicist
Should I have kids? With chronic pain and fatigue, am I capable of being a present, caring mother, who gives them the attention they deserve?
hypermobilephysicist.com
Autonomic testing today went about as expected. The tech's responses were all shock especially during the tilt table testing #Pots #dysautonomia #mecfs
October is #dysautonomia awareness month and today specifically is #potsawareness day!
I may look completely fine on the outside, but inside my body is a complete mess. With ehlersdanlos, MCAS and pots… I can get exhausted super quickly and fatigued for a long time after doing certain things.
—
Look who gets to cancel my physical therapy appointment this evening because I couldn't say no to a grilled cheese sandwich #dysautonomia
I bought extra Normalyte this month to stock up to get the bulk discount but also to get these dope compression socks.
#pots #dysautonomia #potsawarenessmonth #dysautonomiaawareness #orthostaticintolerance #hydration #electrolytes #saltyaf #chronicillness #ehlersdanlossyndrome
