IST counts as #dysautonomia I guess. Metoprolol helps, yet I also wonder if the tachycardia's a sign I'll have problems later. I see a heart doctor every year.
I've had this problem all my life and just a few years ago I got the diagnosis.
Back at it. Am I still sore? Yep, but it's reasonable. I did 20 minutes of #rowing for 300 strokes, a nice and slow row at level 3. Did 20 minutes of gentle #pilates (#JessicaValant on YT, see previous toots for video link) and about 15 of #yoga stretching. 25 zone minutes on the #Fitbit. That's enough for today. Are you getting some movement in? What's working for you?
Question for #disabled/chronically ill Mastodon folk with conditions that cause issues with cold e.g. #dysautonomia, #raynauds ... I've been doing more swimming and aquafit (good for me in many ways!) but I'm seriously struggling with cold recently. Warming up after swimming is taking *hours*. Are those long-sleeved swimming costumes any good? Anyone found any other solutions? #disability [ETA: I swim in an indoor pool, not wild swimming. My cold intolerance is pretty bad!]
No #rowing yesterday or today. I'm sore. Hurting from head to toe. It feels DOMS on steroids. Jaw, shoulders, lower back, hips, knees and toes are screaming. I'm also exhausted. I know fighting through it is what everyone says to do, but I honestly can't. I did 20 minutes of gentle nighttime yoga yesterday & tonight I'll do the same. At least I won't be backsliding, right? Ugh. I wish I had more guidance on this. I'm going to smoke a bowl & reassess. #POTS #dysautonomia #KickingTheShitOutOfPOTS
Yesterday, I rested. I'm proud of myself for not only letting my body rest, but for also getting back to it with no excuses. I woke this morning with no hip pain so I did my #row for 365 strokes at level 3 for all but the last 2 minutes where I rowed as hard as I could at level 5. I'm going to feed the Younger Kidlet dinner, then find #pilates.
CDC Update: Epidemiologic Characteristics of #LongCOVID
Includes symptom groups (incl. ME/CFS-like & #dysautonomia) & prevalence data. "Post #COVID conditions are associated with increased health care utilization & significant activity limitations. Accumulating evidence #COVID19 vaccination reduces #PostCOVID Conditions among both children & adults”
I've apparently decided to keep beating on it because I did the same class as last night & banged out another 250 #rowing strokes. 💪Level 3 for warm up & workout, level 1 cool down. Got my heart rate up. I'm sore. But I feel like my knees bounced around less today & I was really able to put some power behind the strokes. Felt good. Tonight my plans are for a hot bath & then early bed. Tomorrow should be a rest day. Don't wanna. I have to keep moving. #KickingTheShitOutOfPOTS #Dysautonomia
I wish I knew the question I want to ask about the experience of using a rollator. So I kinda feel like I need to come at it from all angles at once.
How do people decide to use one? What are the issues that lead to it being helpful? What's the experience of using it like? Does it feel like having a device that enforces your personal bubble? How do you deal with stairs?
#MobilityAid #POTS #Dysautonomia #MECFS #PWME #NEISVoid
I’ve been asked by my counselor to pick a random #affirmation from a list each day and write about it, so here goes:
Affirmation # 79: I am going to get through this.
Well this one is super relevant. This is maybe one of the trickiest things to write because my problems lately seem never ending. But I have to keep listening to hope, to not give up.
Each day is a struggle. But every so often, I look into the bathroom mirror where I can barely see myself from my wheelchair, hold up a clenched fist, and say, “Lily, you are strong.” I’ll never stop doing that. I think I might just start doing it more.
P.S. — I made most of a tuna salad sandwich by myself today! Felt good.
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
@LittleSteps2B So, if I may give unsolicited advice- learn as much as you can about your illness. It is frustrating to go to doctors who aren't educated in #POTS. YouTube has been a wonderful resource. #Dysautonomia International's website helped me too.
I also wish I kept a better journal with symptoms, doctor's names & appointments & outcomes. By the time I got diagnosed I'd been ill for 7 years. I saw a lot of doctors and had many, many tests done. I should have tracked it all better.
I swear, if you want to make millions- design a #LongCovid, #Dysautonomia, #POTS friendly workout facility. Not a medical place, but not a full-on Arnold Schwarzenegger #gym either. (We'll need to keep the riffraff out 😉) Have different level of classes that last 10 minutes, 20 minutes & 30 minutes. Teach clients how to follow the CHOP method, make tracking heart rate easy, build a community to help people heal. Rowers. Meditation. A THERAPY POOL.
@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:
Der Nachteil daran dass mein Betablocker jetzt meine Tachykardie durch mein #POTS 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 #mecfs und #dysautonomia👍☠
@blogdiva Yep. So many years of neglect. No treatments due to vastly underfunded research.
Many viruses can trigger long term illness, 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.
being #disabled never gets easier, even when facing the possibility of immensely successful treatments
its still having to trudge through mud and sand, in the middle of a windstorm, with several ton weights strapped to your ankles in order to get there
coming to terms with a serious and severe #diagnosis isnt easy. sure im "lucky" it was found in my early 20s and not late 50s like my mom, but that doesnt change jack-shit how im feeling
#migraine 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.
Achy this morning from all the standing-around at Pride yesterday! But happy that I was even able to do it. Since having covid last autumn, there've been lots of days when that wouldn't have been possible.
(due to dysautonomia / postural tachycardia, limiting how long I could sit up / stand up)
@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."
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
#Cooking is a really hard job, and there are many parts of #LongCovid that make it even more difficult. I get heart palpitations, dizziness, headaches, nausea, among other things from #Dysautonomia. But I have a real fear of getting #Covid again and losing my sense of taste and/or smell. Not only would it affect my ability to make any money at all, it would take away one of the major joys of my life that I still have.
Well, fainted in my car today in the grocery store parking lot. I felt it coming on and just made it to the car. A grocery worker called 9** for me. A nice marine/volunteer emt stayed until the ambulance arrived. Everyday, Dysautonomia takes more freedom away from me. I’m nearly homebound and it sucks. There’s no cure and I’m feeling really shitty and isolated. I can’t even do simple grocery trips anymore. I’m on a 3 year waiting list for a specialist. Really just sad today. #pots #Dysautonomia
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.
PS. I'm not affiliated with them, just a customer
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.
*Virtual Option* Conference, this weekend, register ASAP.
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.)
I’ve decided to give decaf #coffee 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…🤞☕️
Preprint: "High incidence of autonomic dysfunction and postural orthostatic tachycardia syndrome in patients with long-COVID: Implications for management and healthcare planning"
"The majority (79%) of those with PASC met the internationally established
criteria for POTS"
"Autonomic testing should be routinely undertaken in those with PASC [Long Covid] …"
A new way of thinking about persistent infections, such as long COVID and chronic Lyme disease
“Infection-associated chronic illness” sounds like a mouthful.
But using that name has sparked a paradigm shift in how researchers and others view ailments that can keep people sick for years—with few or no options for getting better.
1 in 5 British doctors have had to stop working due to #LongCovid
Today's BMA report confirms what we already knew; healthcare settings must have FFP2/FFP3 masks and appropriate air safety measures
Not entirely surprised at this: evidence that some people get post-covid-vaccine POTS (postural tachycardia syndrome), though the rates are lower than post-covid POTS. Research ongoing.
Re-#introduction via hashtags:
Probably not #autistic but do have some of the traits (e.g. I like accurate words & non-scritchy clothes :-) )
Whatever it is I've caught this time (could be covid could be something else), it does seem to have set off the dysautonomia again. This is vexing, because it had only just worn off from the bug I had in May.
End of June I had maybe 3 or 4 days where it wasn't affecting me. On Friday I did the standing heart rate thing & it was rock steady at 81bpm, old-normal. Now it's back to escalating tachycardia when I stand up, 90s to 107bpm this morning. Bah.
Some things about me:
I have so many disabilities, I find it difficult to remember most of them. This includes the following: #ADHD, #Autism, #Insomnia, #Dysautonomia, #ChronicMigraines, #Type2Diabetes, #VisualSnowSyndrome, #Agoraphobia, #Dyspraxia, #ChronicDepression, #TopographicalDisorientation, etc. This list is nonexhaustive.
Talking about one of the Pride festivals later in the year, I said the words "if I'm well enough". And then it struck me how often I've said those words this year.
Pre-covid, I often _would_ say some kind of an acknowledgement that we don't know the future, anyway - a sort of atheist version of "Deo volente". But now that I have this #dysautonomia stuff coming and going, it's much more a matter of practical planning! Things you can do if you can stand up for a couple of hours, or not if not.
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. 🙏
From Dysautonomia International:
"Do you have Long COVID POTS?
Researchers around the U.S. are studying an immunotherapy drug, efgartigimod, to see if it may help Long COVID POTS patients. Learn whether you can participate in this study"
Good news - I've tested negative for covid. That was a lab test, about a week into being ill, so I think I believe it. Phew.
The flip side is... that implies that things _other_ than covid are now able to re-kick-off my originally-covid-related dysautonomia :-(
Hard to guess now how long it might take to clear up. I think I do feel a bit better today than yesterday. I suppose if it keeps on happening, then after a while I'll have more data to do the predicting from.
Still don't know for sure if current illness is or isn't covid again, but there are certainly some very similar things happening with my heart rate as happened when I did have covid, & which went on happening for months afterwards... :-(
(Tested negative on lateral flow test so far, like last time. Planning to do expensive lab test from Boots when it arrives, in which I have more trust, see upthread. Meanwhile quarantining from rest of household.)
I'm having a hard time finding people to follow on here, so if you meet one or more of the following, lmk (or favourite!)
and if your political and social leanings are very much on the left
That's... tip of the iceberg, really, so even if it's an adjacent thing still let me know.
#disability Mastodon, I need your help: can a grabber reacher tool, like the litter picker things, be used to open and close a window handle? Photo below for reference.
Distance wise I should be OK if I get an extra long one (110 cm / 43 in) but I’m not sure if it will work.
2/2 Here's a quick summary how to do the 10-minute stand test, which *may* give you an idea if you or a loved one might have POTS.
The 10-minute stand test may not indicate POTS in some people who actually do have it, but it can be an indicator, & it only takes 10 min.
1/2 A very common new diagnosis with long covid is postural orthostatic tachycardia syndrome (POTS). We may be seeing much more of POTS in the future. It can be mild or severe.
The 1st step in feeling better is knowing what the problem is. There are coping strategies.
This is a simple/easy test you can do at home, w 1 or 2 other people there, then discuss w your Dr. It is well worth knowing what to look for.
(hashtags because I misspelled dysautonomia initially)
Generally salt slightly raises blood pressure, in people with POTS, *high* salt content can lead to *lower* heart rate and blood pressure.
Many people with POTS have hypovolemia (too little blood volume). It''s the relative lack of blood transport to the brain that causes signaling to raise heart rate (and possibly also blood pressure) via norepinephrine.
Adding salt, which causes water retention, adds more blood volume, so less signaling.
I really, really feel for what folks with Long COVID are going through. Believe me, I do. Governments and systems that were/are supposed to protect us and provide accurate information totally failed and continue to do more harm than good. But, I really wish I would stop seeing, "No one told us! No one knows what we're going through!"
Disabled and chronically ill people and their advocates have been beating our heads against the walls trying to warn people for three years now. Chronic post viral illnesses as a whole are not a new thing. It's okay to say, "I didn't hear the voices of disabilty activists, and I wish I had." Then amplify those voices.
Today is #LongCovidAwarenessDay.
I'm exhausted, but I'll try to add some data.
16 months ago I contracted COVID and had medium to light symptoms. Flu-like chills, low spo2, fever, horrendous body aches, and brain fog like you wouldn't believe.
1) The brain fog has never lifted. 16 months I've been operating at 30-50% brain capacity. Memories are tougher to access, words more difficult to grasp, absolutely no focus.
2) I have now had a Shingles outbreak TWICE in the last 9 months.
3) Last July, my false ribs started popping, and now I have constant costochondritis pain.
4) In November, I suffered some emotional setbacks, and was treated with outrageous tachycardia. This has developed into POTS-like symptoms, which means I almost pass out walking to the bathroom. *The heart complications also mean that I can no longer take my #ADHD meds, so there's no climbing out of this brain fog.*
I've had every blood test anyone can think of, and on paper I'm completely "normal". I had a Holter monitor installed, which showed nothing. Finally getting an echo and a tilt table test in May.
Yes. May. It'll be 18 months since my initial infection, and 7 months from my first heart-related symptoms.
I have little faith that anything will change.
I do not remember what "okay" feels like. Please read that sentence again and let it settle in your gut, it's important to understand where we're coming from.
I don't have answers, and the amount of work I have had to do by myself to get testing and taken seriously is ridiculous. Long COVID is a disability, and our society has never been good to people like us. I've been through the SSDI process before with the spouse who was rejected despite gnarly x-rays showing her Arthritis damage.
Be kind to the Longhaulers in your life. They may be cranky because the internal state of their organs is off. They may forget things because their brain no longer functions the way it did.
I realised I did not use any kind of hashtags here, which might make it difficult to find each other, so here is a hashtag post: #autistic #adhd #celiac #hypermobility #epilepsy #chronicpain #migraines #dysautonomia #ptsd #queer #trans there are probably others but that's what I can think of right now with 5 hours of sleep
At 2pm this coming Saturday 11 March, the Zero Covid Scotland group will host a public meeting about the possibilities of covid prevention. It will be via Zoom & will feature Prof Stephen Reicher (St Andrews Uni & Independent Sage) and Lara Wong (Clinically Vulnerable Families).
The recent tube feeding case shows more needs to be done to highlight the importance of orthostatic intolerance in ME/#CFS. Patients lie down (or sit down) because they have to. This research team has published important research in area a lot of which is summarised in this.
From Scientific American:
"Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments"
Includes a quote from Dr. Avindra Nath about ME/CFS (see reply to this post).
Alright, time to revisit the intro message!
I'm located near Portland, OR (PDX). I'm an infosec technical editor/writer by day, and a massive plant nerd by night.
I've been collecting aroids off and on since the early 00s. I'm beyond stoked that they're becoming so easily accessible today (even if they're still weirdly overpriced in some instances).
Outdoors, my spouse and I are growing a food forest and specializing in foods/plants native to our area. We're slowly turning an acre into a lovely orchard/salad bar.
We've got chickens/goats/sheep plus 3 cats and 3 tortoises. All this is to say we're creating our own little neurospicy disneyland/happiest place on earth.
Still very much taking Covid seriously, even though that's becoming a hella lonely proposition. We're both high-risk and not keen on getting any more health issues than we've already got.
#NEISVoid #CovidIsNotOver #HousePlants #Aroids #MECFS #MCAS #POTS #Dysautonomia #FoodForest
Hello. I'm a newbie & hoping to connect with people interested in #history and reading (#scifi #fantasybooks #litfic) as well as nature and #poetry. In between care-giving and #writing I am also campaigning with charities on the current lack of health services for people with #LongCovid and #Dysautonomia in Scotland.
I told myself that 2023 was going to be the year I push through my medical PTSD and really try to get my shit together, but now I need to figure out where to start.
If I don’t get proper treatments soon this is going to kill me.
I need a proper doctor. Fluids. Proper meds and treatment.
Reaching out while still can.
If I don’t get proper treatments soon this is going to kill me.
I need a proper doctor. Fluids. Proper meds and treatment.
Reaching out while still can.
‘We’re all vulnerable’: One in 10 people will end up with long COVID, new study says
"Three of the report’s authors – Hannah Davis, Lisa McCorkell and Julia Moore Vogel – have experienced long COVID themselves. Their co-author is American cardiologist Eric Topol.
'We need a comprehensive long COVID research agenda that builds on the existing knowledge from ME/CFS, dysautonomia and other viral-onset conditions.' "
Really good info on #Pots and #Dysautonomia in the #black community.
"A reminder to #MedTwitter #POTS and other forms of #dysautonomia in men, especially #black #men, are going to look very different than in young #women. A #TiltTable test may not reveal the required 30 bpm heart rate elevation, but don't let this fool you into a misdiagnosis.
Something that's really frustrating about realizing/being diagnosed with both autism and POTS in the same year is that I have no idea how much of my symptoms are caused by one or the other, or a combo of both.
I know that stress is my main trigger for my digestive symptoms(I also have IBS, because of course I do😅), and that I've definitely been in burnout most of the year, during which I've experienced an uptick in POTS related symptoms.
But now, after having a short period of feeling quite well both mentally and physically, I'm back to having a racing heart, feeling more anxious(especially in evenings?) and having more digestive issues(this also tends to coincide with anxiety in evenings), fatigue, and even body aches.
I've ruled out illness(everyone in the house is fine and it's been days at the same uncomfortable baseline) and ultimately I'm sure that the main cause is stress, but I feel it would be helpful to be able to parse out whether I'm too overstimulated or need more water or salt; if doing some yoga is what my body really needs, or if I actually just need to spend more time in bed/relative solitude. Or is it both/all?
Everything I do feels wrong or not enough. My husband is home from work all this week and I want to spend the time recovering but I don't know what it is I need most.
I know it's a very individual problem, but if anyone with a similar combo has had luck differentiating between autistic burnout and a POTS/IBS flare, I'd love to hear about that. Also, just solidarity.
Hi, I’m Noa (they/them). I’m a thirty-something living in Tkaronto (aka #Toronto, Canada). I’m a #writer, planning on going back to uni for creative writing. I’m in the process of writing a chapbook and memoir focusing on those themes.
Would you like to learn more about Long Covid in children & young people?
View or Download our free support guide packed with info, signposting and research.
Chapters for families, children & young people, health care professionals & educational staff.
#LongCovidKids #LongCovid #Support #Christmas #mecfs #Pans #Pots #Dysautonomia #mcas
Survived my second tilt table test. I am ridiculously fortunate to have gotten appointment and got helpful results but the test is awful, the results are not good news, and I think it will take days/weeks to recover. As my mother, paraphrasing Bette Davis, would say: Long Covid is not for sissies. #LongCovid #Dysautonomia
Making a #Introduction is kind of intimidating, but I'll try...
I'm a #queer #nonbinary #unschooling #parent of two teens. In my previous life
I was an #RN, but thanks to a #BrainTumor and #dysautonomia, I'm now #disabled with #ChronicMigraine, #ChronicPain, and #POTS. Also, #HardOfHearing / #SingleSidedDeaf, #FacialParalysis, and #ExecutiveDysfunction. Now I'm a #RadicalHomemaker and a wannabe #farmer. When my body is up for it I piddle around outside #building things, doing #projects, learning about whatever interests me, and trying my best to be a good #LandSteward to the forest. And since being #rural can be kind of lonely, I listen to a lot of #leftist and #comedy podcasts.
In addition to my kids and coparent, I share my yard with my #chickens and #ducks, a small, young #FoodForest, #flower and #herb gardens, and lots of #NativeForest with all the native critters. I'm an #anticapitalist, #anarchist ( #anarchocommunist ), #buddhist, #EarthCenteredSpirituality, #lgbtq, #queer ( #Butch4Butch & #T4T ), #polyamorous, #RelationshipAnarchist.
Here's a bunch of tags of other things that interest me:
#baking #gardening #chickens #muscovy #DogTraining #DIY #CompetitionRealityTV #DisabilityAdvocacy #ASL (very much a beginner!) #farming #sustainability #agroforestry #TransRights #trees #birds #tattoos #tarot #WheelOfTheYear #YouthLiberation #SelfDirectedEducation #ForestBathing #rest #crafting #upcycling #nature #zen #CovidConscious #woodworking #construction #ReclaimedMaterials
(I keep editing to add things I forgot 🤦♂️)
You can join in virtually by doing one or more of these actions:
* Email Biden and other Congress members
* Watch and share the Livestream of the protest, scheduled for noon Eastern Time
* Spread the message online - social media toolkit provided
For more details see
My friends' band is having an album release party this weekend. At a crowded bar. I haven't been out to see the band live since before the pandemic started. I know it bothers my partner (who is in the band) that I don't come out to gigs, but I'm immunocompromised. Even vaxxed, boosted and still masking, I'm not comfortable going to a bar, no matter how much I love the people there.
I missed a going away party for my in-laws earlier this month because it was at a karaoke bar.
Guh. I hate this shit. I miss who I was able to be in 2019.