1. < Post-COVID Recovery & COVID-19

Possibly autonomical dysfunction

Posted by cayzmom @cayzmom, Apr 2, 2022

Hi. I tested positive for covid on 1/13/22. The initial 2 weeks were not typical. No cough, no loss of taste, just minor body aches and fatigue. However, by day 12, I was in the ER because my entire body was numb and felt like a torch on me. Diagnosis, post-covid neuropathy. That was on 1/30. Then on 2/5, another visit to ER. This time by ambulance because I couldn’t function. My heart rate was very high, bad stomach cramps. Sweating and rapid breathing. I thought it was maybe a heart attack. A few hrs later, after several tests and imaging, diagnosed with pancolitis.
Fast forward 2 months later, I am still a mess. My HR increases when I stand. Will continue riding until I sit down, thus resulting in not being able to do much. Body burning often, mostly feet, shoulders and arms. And I have had a GI flare-up every 2 weeks or more. They usually last about an hour but last night it last 4 hrs!!! I lost 7 pounds overnight. Not healthy.
I just completed wearing a heart monitor for 14 days., and had an ultrasound done. Will get results on 4/6. Finally got into a GI specialist a few days ago. Waiting on bloodwork and he scheduled me for a colonoscopy.
But in the interim, have any of you been dealing with a similar experience after covid?
I was healthy before all this.

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RMS | @rinadbq | Apr 3, 2022

I also have the palpatations/heart rate and shortness of breath issues as well. Multiple tests were negative until I had a 21 day monitor. My heart would start racing for periods while at rest, as well as when first standing up and moving. The cardiologist started me on a 'Beta-Blocker' which has made a HUGE different with not only the heart rate, but the shortness of breath as well. Prior to the monitor all my Drs told me the palpitations were related to deconditioning, not being as active as I was before COVID but the continuous monitor told the real story, in real time, in my real life. There is a difference between POTS (Postural Orthopedic Tachycardia Syndrome), which is a fast heart rate most often seen when standing from a seated or laying position. I have Inappropriate Sinus Tachycardia which is a fast heart rate that is not dependent on position changes. Watch out for lightheadedness/dizziness with position changes, take your time standing up, sit at the side of the bed for a moment before standing, then stand in place a moment before walking-you don't want a fall to happen in addition to your other problems.

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2 replies
cayzmom | @cayzmom | Apr 3, 2022
In reply to @rinadbq "I also have the palpatations/heart rate and shortness of breath issues as well. Multiple tests were..." + (show)
@rinadbq

I also have the palpatations/heart rate and shortness of breath issues as well. Multiple tests were negative until I had a 21 day monitor. My heart would start racing for periods while at rest, as well as when first standing up and moving. The cardiologist started me on a 'Beta-Blocker' which has made a HUGE different with not only the heart rate, but the shortness of breath as well. Prior to the monitor all my Drs told me the palpitations were related to deconditioning, not being as active as I was before COVID but the continuous monitor told the real story, in real time, in my real life. There is a difference between POTS (Postural Orthopedic Tachycardia Syndrome), which is a fast heart rate most often seen when standing from a seated or laying position. I have Inappropriate Sinus Tachycardia which is a fast heart rate that is not dependent on position changes. Watch out for lightheadedness/dizziness with position changes, take your time standing up, sit at the side of the bed for a moment before standing, then stand in place a moment before walking-you don't want a fall to happen in addition to your other problems.

Jump to this post

Thank you for sharing. I’m happy to hear the beta blocker is helping.

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cayzmom | @cayzmom | Apr 3, 2022
In reply to @rinadbq "I also have the palpatations/heart rate and shortness of breath issues as well. Multiple tests were..." + (show)
@rinadbq

I also have the palpatations/heart rate and shortness of breath issues as well. Multiple tests were negative until I had a 21 day monitor. My heart would start racing for periods while at rest, as well as when first standing up and moving. The cardiologist started me on a 'Beta-Blocker' which has made a HUGE different with not only the heart rate, but the shortness of breath as well. Prior to the monitor all my Drs told me the palpitations were related to deconditioning, not being as active as I was before COVID but the continuous monitor told the real story, in real time, in my real life. There is a difference between POTS (Postural Orthopedic Tachycardia Syndrome), which is a fast heart rate most often seen when standing from a seated or laying position. I have Inappropriate Sinus Tachycardia which is a fast heart rate that is not dependent on position changes. Watch out for lightheadedness/dizziness with position changes, take your time standing up, sit at the side of the bed for a moment before standing, then stand in place a moment before walking-you don't want a fall to happen in addition to your other problems.

Jump to this post

You are right about getting up slowly. I black out if I stand too quickly. I had the heart monitor for 14 days and also had an ultrasound done last week. My follow up with cardiologist is this coming Wednesday. Praying for answers. I hope to continue to get better.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 10, 2022
In reply to @cayzmom "You are right about getting up slowly. I black out if I stand too quickly. I..." + (show)
@cayzmom

You are right about getting up slowly. I black out if I stand too quickly. I had the heart monitor for 14 days and also had an ultrasound done last week. My follow up with cardiologist is this coming Wednesday. Praying for answers. I hope to continue to get better.

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@cayzmom, what did you learn at your follow-up appointment? Next steps?

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1 reply
cayzmom | @cayzmom | Apr 10, 2022
In reply to @colleenyoung "@cayzmom, what did you learn at your follow-up appointment? Next steps?" + (show)
@colleenyoung

@cayzmom, what did you learn at your follow-up appointment? Next steps?

Jump to this post

So far the cardiologist believes that it’s an autonomic dysfunction causing the tachycardias. T
He is sending me for a heart mri. And on the GI issues, I tested positive for having ASCA IgG antibody which doesn’t seem promising but won’t know more until after colonoscopy on 04/22. 🫤

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12, 2022
In reply to @cayzmom "So far the cardiologist believes that it’s an autonomic dysfunction causing the tachycardias. T He is..." + (show)
@cayzmom

So far the cardiologist believes that it’s an autonomic dysfunction causing the tachycardias. T
He is sending me for a heart mri. And on the GI issues, I tested positive for having ASCA IgG antibody which doesn’t seem promising but won’t know more until after colonoscopy on 04/22. 🫤

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Please let us know what you learn after the 22nd. I’ll be interested to hear.

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cayzmom | @cayzmom | May 7, 2022

Update but not many answers:

Had the colonoscopy. 3 precancerous polyps. Thank God I had it done. No inflammatory diseases. Inflammation is caused by covid.
Had heart ultrasound and mri, no heart issues. Heart is healthy. Tachycardia caused by autonomic dysfunction.
I was given a beta blocker but it caused bradycardia so I stopped taking them. Praying this all goes away soon.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 14, 2022
In reply to @cayzmom "Update but not many answers: Had the colonoscopy. 3 precancerous polyps. Thank God I had it..." + (show)
@cayzmom

Update but not many answers:

Had the colonoscopy. 3 precancerous polyps. Thank God I had it done. No inflammatory diseases. Inflammation is caused by covid.
Had heart ultrasound and mri, no heart issues. Heart is healthy. Tachycardia caused by autonomic dysfunction.
I was given a beta blocker but it caused bradycardia so I stopped taking them. Praying this all goes away soon.

Jump to this post

Crazymom, this sounds like you got a few answers or at least places to start. Thank goodness you got the colonoscopy done and stopped those precancerous polyps in their tracks. No cancer, no heart issues, no inflammatory disease is all good, right?

So what is next re the COVID-related inflammation? Is that expected to resolve with time? Next steps re tachycardia and the autonomic dysfunction?

REPLY
1 reply
cayzmom | @cayzmom | May 14, 2022
In reply to @colleenyoung "Crazymom, this sounds like you got a few answers or at least places to start. Thank..." + (show)
@colleenyoung

Crazymom, this sounds like you got a few answers or at least places to start. Thank goodness you got the colonoscopy done and stopped those precancerous polyps in their tracks. No cancer, no heart issues, no inflammatory disease is all good, right?

So what is next re the COVID-related inflammation? Is that expected to resolve with time? Next steps re tachycardia and the autonomic dysfunction?

Jump to this post

I had an appt on Tuesday with another cardiologist. This time at Tampa General Hospital. Said that it is POTS that I’m experiencing brought on by virus. Doesn’t know long term prognosis because covid is the only virus he has seen so many patients get it from, and it’s not all in the books yet. And in regards to the GI issues, I’m got an appt at TGH but not til Nov. UGH and will see what that dr says. I don’t feel like this dr was thorough. He didn’t even do an upper endoscopy to look at my stomach. Something is not right. I can sense it. 🙁

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