Any #LongCOVID survivors open to sharing their experience? Iâm struggling to make sense of whatâs happening to my nervous system. I recently spoke with a friend about it, but Iâm looking for something in writing to help me process it. My emotions are on a constant loopâanxiety, sadness, laughter, and crying all within minutes. I feel very overwhelmed and could really use some support or resources. Thank you.
#covid #CovidInquiry #NeurologicalSymptoms #CovidRecovery #neurology
@dariana I'll share my experience, but I consider it mild compared to a lot of others.
- Incredible fatigue. I might get a break for a few days, and then it's back. Even after a solid 8-9 hours of good sleep, I'll start crashing in the afternoon, and a nap has to happen at some point.
- Brain fog. Ridiculous memory problems. It's embarrassing.
- Heart palpitations. I've been checked out, it's okay, but quite annoying.
I'm on month four with no sign of letting up.
@deadtom @dariana It's validating to hear someone with a similar experience to me.
Fatigue - worsens with increased activity, need to manage by pacing. Resting in advance of activities I want to do, having time to recover after, and accept I still might not be able to do it.
I'm not bed-ridden, but my ability to undertake activities has decreased. I can swim like I used to, but a lot shorter distance. And only if I'm not doing other things that day.
Brain fog - my brain doesn't function the same. I often can't think straight, struggle to put things together, and cannot multi-task like I used to. When particularly bad, I can't read books as much as I used to - will often switch to a easy-to-read novel at those times. Things take me longer. I forget lots of things, which I try to help by having a notepad out and writing things down, and using notes on my phone. Also makes me struggle with busy and loud environments - overwhelmed senses.
Heart palpitations - multiple times daily, feels like I'm dying. Cardiac investigations were "clear".
Potentially also related: can't tolerate cold as much, and heat makes everything hard, and likely some blood pressure/dysautonomia effects.
It's a big adjustment, even if relatively minor. My life has changed, and not at my choice. It is hard to communicate this to friends sometimes, and some friends just plain won't/don't want to get what I need. It has taken me a long time to learn what I do actually need, how to pace and how to manage my days, and I still get it wrong. Showing myself grace, gratitude for what I am capable of, and having lots of options for ramping up/down activities (eg. on bad days, stretching gently in bed), and being patient while I continue to learn.
@dariana My heart rate was driving a lot of that for me. I was in tachycardia 20% of the time, which would cause bunch of emotional fall out.
Once I got on beta blockers to slow my heart the emotional roller-coaster stopped. My brain was interpreting the heart rate as fight of flight and everything in-between.
<p>Cardiologist Dr Boon Lim describes himself as an electrician of the heart. Extremely experienced in surgically repairing heart rhythms, he is also an expert in treating <a href='http://www.potsorg.uk/'>Postural Orthostatic Tachycardia Syndrome (POTS)</a> and related autonomic conditions. His approach to the diagnosis and treatment of both the symptoms and pathophysiology of these disorders is refreshing â nuanced and holistic.</p> <p>In this weekâs episode, which is Part 1. of this interview, Dr Boon Lim discusses the challenges that are faced by patients with this autonomic dysfunction, and the methods he uses to assess â the tilt table test combined with a detailed patient history. He describes physiologically what happens to the patientsâ bodies and brains with POTS or POTS-like syndrome and how that causes <a href='https://www.imperial.nhs.uk/our-services/cardiology/syncope'>vasovagal syncope</a> (fainting). We talk about the importance of hydration and how that alters the bodyâs ability to cope with changes in posture that can induce tachycardia, and the detrimental effects of bedrest or reduced movement.</p> <p>In the episode Dr Boon Lim references his diagram showing the changes that takes place in the blood and blood pressure when hydration is increased. The video can be found <a href='https://stopfainting.com/articles-1/'>here</a>, on his <a href='https://stopfainting.com/articles-1/'>stopfainting.com</a> website.</p> <p>For a man with such a depth and breadth of knowledge Dr Boon Limâs openness and humility are stark and his strategies for equilibrium are remarkably simple. If you would like to know more about his approach and what he means by âmissing the elephantâ please tune in for Part 2. of this interview â and if you canât wait two weeks please âfollowâ, âlikeâ, âsubscribeâ, or review here on your podcast app, or comment or contact us with your thoughts via the links below, and perhaps we can release it sooner.</p> <p> </p> <p><a href='https://www.makevisible.com/blog/introducing-the-make-visible-podcast'>Make Visible</a></p> <p><a href='https://x.com/visible_health?lang=en'>@visible_health</a></p> <p><a href='https://www.instagram.com/visible.health/?hl=en-gb'>@visible.health</a></p>
@dariana @ShaulaEvans I have some longer posts pinned, I think, but it's felt like playing a resource management game that was suddenly turned to hard mode with half a dozen extra reaources I needed to manage 
right now, I'm bedridden for the most part with POTS sprinkled on top so I have to walk around my house with a walking stick to spread the strain more evenly while trying to minimise my upright time (unfortunately, sitting in a chair counts as upright time for the most part 
)
I think the hardest part has been explaining to able-bodied people what my body is going through? in a healthy body, if you use all of your stamina, your stamina capacity increases, you recover by resting, and then you can do it again for even more stamina capacity, right? 
but with long covid and me/cfs, if we go anywhere near using up our stamina, our stamina capacity *shrinks*, so people encouraging us to just move our body and do stuff to get our stamina capacity back up are giving us actively detrimental advice 
and I'm with you on the myriad emotions... it feels like I'm able to barely even take care of this meat mech I inhabit while other people live life, do and make art, indulge in relationships and fun activities, and often, even deny the very thing that has disabled us...
I don't have as many brain frogs as other people do so I can at least watch videos and read, but I have friends (including many on fedi) who can't even read anymore even on the best of days 
but I can't play violin anymore and have lost the permanent hickey on my beck that marks me as a violinist, and voice recordings are hard because speaking takes energy... hells, even getting the energy to have voice calls with partners is hard, let alone friends, and streams are an hour or two once a week or two now instead of the 5~6 hours multiple times a week I used to be able to do 
I have found people who genuinely care and are willing to help, which has been one of the main things that has helped me keep fighting 
might write more later? not sure...
this might be odd this many words in, but is there anything specific you'd like to know? 
(this is something I wrote up fairly recently: https://cutie.city/@OctaviaConAmore/115885269685212953 )
Content warning: Chronic Illness, Covid, motivation, being an artist, mostly a note to self, but maybe useful to others?
" 
I'm so sorry, that sounds very difficult! And it does sound like inflammation in the brain
Is it a little better on days when you are well rested, didn't push yourself too much the previous day or two?
Beta blockers are well known for suppressing emotions, as are SSRIs. Sometimes people consider these undesirable side effects, but they might be helpful to you?
Bonus, they are both drugs that a family practice doc would probably be comfortable prescribing, so you wouldn't have to see a specialist
I also wonder if an anti-inflammatory might be helpful?
Of course if you can see a long covid specialist, that is the ideal. But I'm kind of assuming if you could you wouldn't be posting here đ«
If you feel comfortable, it might be worthwhile trying out RTHM Direct. RTHM is a specialty clinic that focuses on long COVID and related illnesses. Their 'direct' service involves typing in your information, having an AI suggest possible treatments, and having a medical person review the output before sending it to you. It's inexpensive. I haven't used it myself, but I know some of the people involved, and it might be worth considering
@dariana
Long covid since 2022. It's been a hard road, but I know a lot of people have it much worse than me.
I started out at about 20% of my previous capacity on my best day, and as others have noted: post exertional malaise means that if you exceed that capacity, your stamina gets worse, not better, and it takes a long time to recover. I've had POTS as well. It's taken a great deal of effort, time, medication, and supplements but I'm back to about 60-70% of my previous capacity on my best day, and if I exceed that it takes me a couple days to recover rather than a week.
One of the biggest adjustments to me, that might be relevant to you, has been that emotional turmoil takes a tremendous amount of energy. I used to be one of those people who could just sort of plow through my emotions and keep going (I know that's not always healthy, but for better or worse that's what I did and it never affected my energy levels). Not anymore. Little things hit me extremely hard - almost like I can feel an impact in my chest, by my heart sometimes, even though I'm taking medication to stabilize my heartrate and it doesn't usually change much measurably (I do have a heart rate monitor now). It drains me almost immediately.
In addition to the medications and supplements I now take, the most profound change for me has come from pacing: measuring my morning resting heart rate for a period of time, then trying to stay around that number as much as possible. It's really made a tremendous difference.
https://www.cfsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelope
I agree with some other people who have posted that it sounds like there might be some inflammation going on with you. Do you drink alcohol? Do you eat lots of foods that are high in histamines? Those are things that can often increase inflammation in long covid, it might be worth investigating them.
Everyone is different, though - there are so many different systems in your body that could be potentially affected. I'm really sorry, I hope you're able to find some relief soon.
I've seen a couple long covid specialists, and they can't help much - there's no cure, there aren't any approved treatments even (all the ones that work for me are ones my amazing heroic PCP and I have experimented with after combing through studies), but they all say the same thing: the worst thing you can do for your health at this point is get covid again. So do be careful. Wear a mask. Maybe get an air purifier. It isn't very studied but the best science we currently have says that when someone with long covid catches covid again, there's a 75-80% chance their long covid symptoms get worse.
@dariana long covid long hauler here:
#LongCovid can affect your mental health too. đ§
âšLarge studies find people with long COVID are significantly more likely to develop depression and anxiety, even months or years after infection
đYale Medicine breaks this down clearly, with real patient stories and expert explanations â https://www.yalemedicine.org/news/depression-and-anxiety-in-long-covid-why-interdisciplinary-treatment-is-needed
Seek counselling if you can.âšYouâre not alone.
@dariana
I'm sorry to hear it, Long Covid is no joke. Hang in there!
For resources and experiences, follow @longcovid (and tag them if you want to be boosted).
You can download the free app Visible https://www.makevisible.com/ to help you track your symptoms. They also have a blog and podcast, and some videos with explanations.
@dariana oh this is hard. Your nervous system going haywire.
Perhaps there's something helpful here
Https://batemanhornecenter.org/education/top-resources/
If you're able to process video: They also have a usefull YouTube channel.
And maybe Gez Medinger or Binita Kane have an episode on nervous system on their youtube.
If nervous system calming activities don't help enough, you might want to look into medicine. I'm not a docter but perhaps Low dose aripiprazol
@dariana Sure thing!
Long Covid diagnosis ~18 months ago, after one confirmed infection.
For me the emotional loop comes and goes, but it's definitely a thing. More often I randomly start having very strong emotional reactions to normal things, crying at slightly sad movies or TV shows, getting giddy at seeing my wife come up the driveway, things like that.
Brain fog too, mostly for little things, like a shopping list, which I never used to need, and it's difficult to tell if learning is harder because of that, or that I'm 44.
My long muscles all ache, all the time, like I've been for a long walk yesterday, even with being on bed rest for a week, my hands also, mostly because I type all day for work, have to be really careful with posture.
Same muscles have very little strength and stamina, though this has improved over the 18 months, with the assistance of an exercise physiologist.
Another thing is my temperature regulation is all whack. Will feel cold at 19C, put on a jumper, and then be feeling hot 10 minutes later, and my instinct for when to put the heater on is no longer reliable.
If I do too much movement in a day, I'll have a crash where I experience covid-like symptoms and get completely exhausted for a couple of days after, not quite bed bound, but not able to do much.
Luckily I have a young GP who's kept up with the COVID research. Low dose Naltrexone has helped a lot with the muscle aches.
I work from home in tech so have been able to keep that going
I have seen slight improvements in all areas over the last year, in particular the last 3 months or so, though I know that's not universal.
It sucks. I am now disabled and have to plan movement quite carefully. I'm finding it mostly manageable now, but it's not been easy.
Here's hoping you can manage and that you improve quickly!
@dariana Yes! I routinely get hyperactive emotions (and some PTSD-adjacent symptoms) as part of my long covid. I'm generally most distressed in months 3-8, and then it gradually dies down as I start figuring out my new baseline and ramps up whenever I overdo.
Things that help over time (not usually right away):
- anything that improves my nighttime sleep quality. Anything - rest, distress reduction, gently drifting around my home, vitamins and supplements, sleep hygiene or regular naps - anything!
- distress reduction techniques. These are different for different people and need trial and error to figure out - for me they include lying with my feet up the wall so my blood pools in my torso, sensory stimulation (heat, touch, scent), removal of environmental stressors (can't cope with any kind of stress and need extremely predictable environment - the cheese slicer must always be in precisely the same place), manual lymphatic drainage of the face/head, and daily enforced scheduled boredom (like meditation, but bonus points for napping).
- active rest. Not just physically lying fully horizontal sometimes, but cognitive (achieving a minimum duration of enforced scheduled boredom and naps/sleep, as well as stopping in the middle of activities when a time limit is reached), emotional (see distress reduction), and sensory (limiting conversation, tv, music, games - nothing blinky or with jerky cameras or sudden sounds).
@dariana I havenât been diagnosed but I can definitely attest that my ADHD symptoms have gotten worse after the first infection in 2021
Regular mental fog, random anxiety attacks without triggers, lost words halfway through speaking and writing, tiredness after household chores, randomly dropping things from my hands, meh đ«€
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