I got COVID-19 back in mid-February for the first time. I'm feeling a lot better, but I have strange lingering symptoms. It's April 7th. Tired and loss of focus by 2pm, and ever since I got infected, I've been smelling weird odors and having similar aftertastes. Not consistent at all. Has anyone else experienced these symptoms? #COVID#COVID19#LongCOVID@longcovid
Lots of good responses here but I'll add this - folks with #LongCovid or #MEcfs might want to check for orthostatic intolerance.
Diagnosis is by tilt table test (gold standard) or NASA lean test (easier / cheaper but may not detect some types)
Meds might help, but even if they don't work it's helpful to know that standing, or even sitting upright for long periods, can make symptoms worse. Reclining with feet elevated, or lying down, is better
I’m at the hospital today for the nutrition follow-up that I was supposed to have 2 months ago.
They’re worried about my weight loss but still won’t do anything besides putting me on treatments I’ve already tried (erythromycin and Mestinon).
They’re also saying they’ll remove my nasojejunal tube once I’ve regained enough weight because that should improve my digestion. I’m so tired they don’t understand that my #gastroparesis is linked to #dysautonomia / #POTS, not weight loss (alone)
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I waited three months for a phone appointment with the top #gastroparesis expert / gastroenterologist in the country… but he forgot to call me.
I rang his secretary twice last week to confirm the appointment. I was supposed to see him at the hospital but I had to switch over to a phone call because none of the 25 ambulance companies I contacted would transport me there (too long a trip).
Hi #fountainpen@penfount & other clever creative folks! Need help locating a thing I’ve seen before.
I’ve seen a bag/folio/hobonichi compatible holder for like, 4-5 ink samples (5mL+ medical sample jars) or holding other small vials. I believe I saw one that was leather with glass, but I’m not fussy.
I’m going to use it for FLAVORED SALTS since it helps with my #dysautonomia (not ink samples) but that’s I think where I saw it before. Anyone got a link please please???
Do these cooler type things work at all? I have to survive another upcoming heatwave and can’t regulate my body temperature (#dysautonomia) so am risking heatstroke again.
Just humidity machines? (Humidity makes thinks even worse).
LMNT’s electrolyte sparking waters are my new fav, like many with who are bulk electrolyte salt subscribers they sent me a free 8-pack, Black Cherry Lime is the best IMO, tastes like Sonic’s famous cherry limeades, unpaid recommendation! What’s yours? 🍒🍋🟩
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!
I’m so freaked out by medical stuff (not to mention severe pda) I’ve never had a primary care doctor only a pediatrician 10+ years ago and urgent care visits when needed since then. Anyway. Now I’m at a doctor and it’s the worst I hate it here it smells disgusting and I want to leave how do people do this every few weeks help 😭
Question for people who have low blood pressure issues. Any recommendations for home blood pressure readers? My current one is giving me an error message when it gets super low because it thinks I can't possibly have the cuff on right (I do). Thanks in advance.
OMG, this device will be SO helpful for me + folks with dysautonomia to better track our vitals before we faint/BP drops/flare-ups start to happen.
I can't wait until it's available. 🙏
Seriously, this will be revolutionary in helping many of us manage our symptoms earlier especially with the rise of #Dysautonomia and #POTS from #LongCovid
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.
"The Sick Times, the nonprofit newsroom focused on Long Covid and the ongoing Covid-19 pandemic, is excited to announce it has received an award of $250,000 from the biotech giving fund Kanro. This grant will fund the organization’s general operations over the next 18 months, enabling its expansion to a larger newsroom."
"… we invite you to witness the profound narrative of Sean Henneberry, a brave soul who has been navigating the turbulent waters of ME/CFS and Postural Orthostatic Tachycardia Syndrome (POTS) since his early teens."
Informative interview with Svetlana Blitshteyn, a pioneering MD in treating #dysautonomia (autonomic dysfunction), which has exploded with #LongCovid by @erictopol