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#pots

32 postitusega23 osalejaga1 postitust täna
Avalik
Rebecca Esther (they/she)

#Spoonies: is it possible to sit with your legs crossed ("criss cross applesauce") on a rollator?

My OT has never heard that question before and said we can test the biggest rollator she can find next time I see her, but she doubts it.

I use a cane now (have for 10 years) and want the rollator so I can sit when my POTS flares.

Thank you for your input and expertise, friends! 💙🫂

#POTS#MobilityAid#pwME
Avalik
Heidi

I'm in an uncomfortable #POTS flare. I hurt head to toe. Odd places. Muscles and ligaments. Migraine. Heating pad, high test medical marijuana and hopefully some rest. I still went square dancing. I figured if I'm going to be miserable I might as well have fun doing it. I may regret it tomorrow. Lol.

Avalik
Tom Kindlon

US research

Dysautonomia in long COVID is prevalent and could explain the frequency of symptoms

medrxiv.org/content/10.1101/20

#dysautonomia @dysautonomia #pots @pots @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

medRxiv · Dysautonomia in long COVID is prevalent and could explain the frequency of symptomsBackground Long COVID presents with a variety of symptoms. Some of those symptoms could be related to autonomic dysfunction. Our aim is to evaluate the prevalence of autonomic dysfunction in long COVID patients. Methods We conducted a cross-sectional study and included all consecutive patients enrolled in several clinical research studies. We performed the following autonomic dysfunction markers: heart rate variability, heart rate, systolic and diastolic blood pressure changes during NASA lean test, cardiopulmonary exercise testing and a COMPASS-31 scale. We used linear regression to calculate the contribution of each dysautonomia measure on symptom burden as measured by the modified COVID-19 Yorkshire scale. Results We included 100 patients for this study. Our sample had a mean age of 56+/-11 years, included 53% minorities and 32% were women. Dysautonomia as defined by an abnormal COMPASS-31 was seen in 82%; 95% 72-89 while cardiovascular resting dysautonomia as represented by an abnormal heart rate variability was seen in 60%; 95% 48-70 of the population, orthostatic hypotension in 12% and POTS in 10%. In our adjusted analysis, we found that the beta coefficient for the COMPASS-31 score (0.37) was significant on changes in a self-reported long COVID symptom burden. The orthostatic intolerance and gastrointestinal domains of the COMPASS-31 was associated the highest long COVID symptom burden. Conclusion Dysautonomia is common in long COVID patients and contributes to the overall symptoms seen in long COVID. Identifying dysautonomia has important diagnostic and therapeutic implications. ### Competing Interest Statement The authors have declared no competing interest. ### Clinical Trial NA ### Funding Statement Yes ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: All studies were approved by the research ethics committees at the Miami VAHS and NOVA Southeastern University and all participants signed informed consent prior to participation. Miami VA is the IRB of record I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data cannot be shared publicly because it is owned but the Veterans Affairs.
Avalik
N95Bias Ⓥ🏴‍☠️

“We’ve suspected for several years now that there is an association between COVID and POTS. I’m seeing this in my own clinic. My waiting list is longer than it has ever been,” said Dr. Blair Grubb, a UToledo Health cardiologist who has treated and studied POTS for more than three decades. “Now we have the data to back that up. This study helps give validity and voice to these patients, and it gives us a treatable target.”

news.utoledo.edu/index.php/03_

UToledo News | The University of Toledo News · COVID-19 Brought About a Large Rise in POTS Cases | UToledo NewsA UToledo study has found a five-fold increase in the number of newly identified postural orthostatic tachycardia syndrome patients post COVID.
#covid#covid19#SARSCoV2
Jätkatud lõim
Avalik *
Frieke

Zie je het kleurverschil tussen vingers en rug van de hand? Beginnende bloodpooling. Teken van #pots en dat ik moet stoppen met mn tuinklusje. Maar was lekker om half uurtje licht snoeiwerk te doen op uitgebloeide bloemranken van de bosanemoon en hemelsleutel.

Rest van de middag = Effe Liggen. Edit; 1,5 uur in bed en nu spierpijn 😯
My #LongCovid life

Compilation of 2 photos of my left hand. Whole hand and more close up. Fingers are dark pink till nuckles. Back of the hand is beige white. Lilac naikpolish
Jätkatud lõim
Avalik
Frieke

Iets ruimte gekregen in vergelijking met het laatste kwartaal 2024. Iets meer stappen op een dag en wat vaker weer rondje hondje. En vandaag met die zon is dat wel heel lekker (zonder bankjes-break EN mn hartslag onder 95 weten te houden).
Gister begonnen met LDN. Benieuwd wat dat gaat doen.
My #LongCovid life with #POTS and #PEM

Screenshot Garmin walking route: 1 kilometer in 27 minutes with average HR 74
Bottle of low dose naltroxen with 2 sizes oral syringe and patient info leaflet
Compilation of 3 photos of German Shepherd-lookalike dog. 1 descending a slight grassy slope to a pond in the park. 1 meeting a Spaniel -like black dog with tail up. 1 with a chocolate Lab sniffing her behind. Dog communication in pictures
Avalik
Deer Witch Nyx

#ArtVsArtist: @illmarks edition

I've spent the last year visualizing Long Covid. Not all of my favorite pieces work well in square crop, so please check out the fedi account above or illmarks.com !

Thank you so much for receiving & sharing my work--it means so much to me as this project continues to feel deeply important.

#ArtVsArtist2024 #MastoArt #FediArt #CreativeToots @penfount #chronicIllness #postViral #LongCovid #LongHaulers #MillionsMissing #MECFS #MCAS #POTS #dysautonomia

9 images collaged in 3x3. they are all straight-on views of a figure on manilla paper, with a printed silhouette of a human. They've been brightly adorned with ink to show a variety of physical and emotional ailments that the patient experiences. In the center is a smiling mirror selfie of a person with sideshaves and dangly earrings, compression gloves, and an asymmetrical black punk top. From top left zigzagging to bottom right like reading, the images show muscles of a person from behind with hooks in their neck and shoulder. a vibrant yellow green and orange figure made up of bubbling mucuous and nausea. a skeleton with chains attatched to their joints. a black silhouette in a tossing ocean. a sheet ghost figure waring a mask surrounded by cartoons of grinning socializing humans with viruses. a figure wrapped in thick restraining bandages. a figure that looks like they're coated in skin burns in red orange and magenta radiating heat. lime green and purple squiggles in the torso and dilated eyes.
Avalik
Broadwaybabyto

If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.

They’re common comorbids and can have a devastating impact on quality of life.

New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?

These can all be caused by POTS, MCAS or a combination of both.

Mega thread of resources and guides below:

I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”

I shielded as soon as I was able (and haven’t been unable to stop).

I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.

Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.

We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.

Patients have to wait longer to see a doctor - and get shockingly little time with them.

Basically - we are truly on our own.

As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.

I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.

My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.

You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.

I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.

With that - the guides! (One per post below)

🧵

#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic

Avalik *
Anna

#Introduction

I’m severely #disabled by #ChronicIllness.

I have #SevereME #AdrenalDisease #Hypothyroidism #HyperParathyroidism #Endometriosis #Migraine #POTS/ #Dysautonomia #ChronicPain & more, topped off by #LongCovid. Hi #NEISvoid

Interests now include not being #exhausted, in #pain, or rejected by doctors for being too complex a patient. (Know good #doctors #GPs in #Melbourne taking pain patients?)

Need help with #housing #NDIS #GP #carer/ #caregiver & navigating the system. LMK!

1/

Avalik
MEActNOW

#introduction

I am someone whose life the onset of #MECFS changed entirely. Before mecfs I was a hiker, swimmer, photographer graphic designer, entrepreneur food enthusiast, traveler and so much more.

I am now hopeful for all of the above. Love #Nature, #birds #Photography #Gardening #Vegan #GlutenFree #GF #Healthy cooking now. #HealthCoach

I am here to share info about MECFS and #LongCovid , #POTS #Health and more!

I also get into conversations about politics. I Block MAGA and rude people.

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Teave