Post-COVID Syndrome is real

Posted by nant @nant, Jul 26, 2021

I had covid mid April and have had many PCS symptoms. I seem to be educating my doctors and therapists. Sometimes it feels like they think I am faking and the next time they tell me they have heard the same thing from others. I am doing everything from aqua therapy, speech therapy for the "fog" and still exhausted, headaches, fog and not sleeping well ect. I have used my short term disability at work and working thru my PTO time. I am more than frustrated. Any encouragement?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@sueinmn

Are you seeing a physician for your symptoms? I seem to remember you had quite a bad case of Covid.
Sue

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Yes but nothing is helping much?

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@cduncan123

Yes but nothing is helping much?

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Have you looked into a post-Covid program or clinic near you (https://www.survivorcorps.com/pccc) or at Mayo? (https://connect.mayoclinic.org/blog/post-covid-recovery/)
My daughter had her intake and first video appointments through her health care system, and sees them in person in September. She still has symptoms from her infection in March 2020, but there were no resources here until May.
Sue

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@nant

Avoiding stress is a full time job. I am supposed to go back to work Monday, no way. I am wondering if I qualify for SS disability. I am now paying my job my insurance bills out of pocket. I am doing aqua therapy, joined a community center so I can walk laps in their pool, seeing a therapist and feel like a walking pharmacy. I have not given up.

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Have you considered asking your employer for an accommodation, or do you have access to long-term disability?
My daughter was covered in early days by FMLA, and then was assigned a suitable (seated and remote) job for the past 14 months. She has just begun to look at transferring back to an active nursing position, but not in the crazy busy metro ER - something more routine.
Sue

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I had my Moderna shots in March/April. I had the normal side effects initially that went away. At the beginning of June I suddenly had an episode of intense dizziness, feeling like I was in a dream, rapid heart beat and headache. The dizziness has not gone away - some days worse than others but I cannot drive, feel like I'm in a constant state of "unreality", have headaches and have brain fog. I went to Urgent Care and the ER and their tests show nothing wrong. My GP had me have a blood test which showed nothing wrong. He sent me to a cardiologist where I had a EKG (normal). I wore a heart monitor for three days but it was normal. I then went to a ENT who tested for inner ear problems and Menieres Disease - tests came back normal. I am scheduled to go in for an MRI. The feeling of dizziness is debilitating and the brain fog is affecting my work. I am surprised I have not been fired. My doctor has been reluctant to give me any medication during the time I was having the tests. My anxiety is through the roof. Does anyone else have these symptoms and what have you done about it?Has anyone found medication that can help? There are times when I feel I cannot continue living this way - going from doctor to doctor and no one being able to help me. I cannot imagine my life this way and really need help.

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@maryglend

I had my Moderna shots in March/April. I had the normal side effects initially that went away. At the beginning of June I suddenly had an episode of intense dizziness, feeling like I was in a dream, rapid heart beat and headache. The dizziness has not gone away - some days worse than others but I cannot drive, feel like I'm in a constant state of "unreality", have headaches and have brain fog. I went to Urgent Care and the ER and their tests show nothing wrong. My GP had me have a blood test which showed nothing wrong. He sent me to a cardiologist where I had a EKG (normal). I wore a heart monitor for three days but it was normal. I then went to a ENT who tested for inner ear problems and Menieres Disease - tests came back normal. I am scheduled to go in for an MRI. The feeling of dizziness is debilitating and the brain fog is affecting my work. I am surprised I have not been fired. My doctor has been reluctant to give me any medication during the time I was having the tests. My anxiety is through the roof. Does anyone else have these symptoms and what have you done about it?Has anyone found medication that can help? There are times when I feel I cannot continue living this way - going from doctor to doctor and no one being able to help me. I cannot imagine my life this way and really need help.

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@maryglend and @bluff, this discussion is talking about recovering from COVID infection, not reactions to the vaccine. I applaud you for getting the vaccine. Have you also had COVID infection?

If you would like to discuss more about the vaccine, see this discussion:
- Long Term Effects of COVID Vaccinations https://connect.mayoclinic.org/discussion/long-term-effects-of-covid-vaccinations/

And this Vaccine Guide from Mayo Clinic: https://www.mayoclinic.org/coronavirus-covid-19/vaccine

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@nataliem @jennifergillan03, you asked about resources and research regarding post-COVID recovery being done at Mayo Clinic. Here's an overview:
- Post-COVID Conditions https://www.mayoclinic.org/coronavirus-covid-19/post-covid-19-conditions

I also encourage you to follow the Post-COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/tab/newsfeed/
The expert team at Mayo Clinic shares latest developments, research trials, resources, and information about the coronavirus, long-term effects, and recovery.
They also update this research page as new evidence and research studies become available.
- Post COVID-19 Research https://connect.mayoclinic.org/blog/post-covid-recovery/tab/research/

What questions would like to Mayo experts to address in upcoming blog posts?

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@colleenyoung

@maryglend and @bluff, this discussion is talking about recovering from COVID infection, not reactions to the vaccine. I applaud you for getting the vaccine. Have you also had COVID infection?

If you would like to discuss more about the vaccine, see this discussion:
- Long Term Effects of COVID Vaccinations https://connect.mayoclinic.org/discussion/long-term-effects-of-covid-vaccinations/

And this Vaccine Guide from Mayo Clinic: https://www.mayoclinic.org/coronavirus-covid-19/vaccine

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Thanks I will go to the sites you recommend. I dont know if I had COVID or not - if I did it was very mild and I did not get tested. I definitely got the two Moderna shots so will follow up on that. Thanks

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@sueinmn

I am sorry to hear of your experience, but you should actually be encouraged by it - this is a symptom of your immune system "revving up". See this info https://www.cdc.gov/coronavirus/2019-ncov/vaccines/expect/after.html

I don't know whether anyone can predict what will happen with the second dose. At my house, my husband felt "rough" but not down in bed for 3 days after the first Pfizer dose, breezed through the second with a sore arm and mild headache. My daughter, who has long Covid, was quite ill from her first doses of Pfizer for 3-4 days, but breezed through her 3rd dose last week with a headache and sore arm. I react to ALL vaccines, and had my typical inflammatory flare to each dose. A month after the second, I was treated with a course of steroids to calm it. I would say that these are typical of the range of reactions...
We consider the temporary discomfort a small price to pay for reducing our risk of getting Covid and/or spreading it to our little grands.
If nothing else convinces you, read about the people living with long Covid, with no end in sight, compared to a few days of discomfort. Nobody knows who will develop it - young/old. severe/mild case. underlying conditions or not.
Sue

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Removed.

Editor's Note:
This comment was removed according to the Community Guidelines. https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

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@colleenyoung

@nataliem @jennifergillan03, you asked about resources and research regarding post-COVID recovery being done at Mayo Clinic. Here's an overview:
- Post-COVID Conditions https://www.mayoclinic.org/coronavirus-covid-19/post-covid-19-conditions

I also encourage you to follow the Post-COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/tab/newsfeed/
The expert team at Mayo Clinic shares latest developments, research trials, resources, and information about the coronavirus, long-term effects, and recovery.
They also update this research page as new evidence and research studies become available.
- Post COVID-19 Research https://connect.mayoclinic.org/blog/post-covid-recovery/tab/research/

What questions would like to Mayo experts to address in upcoming blog posts?

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Speaking for myself, and probably many others, the debilitating fatigue is the most devastating condition. The fatigue is why I lost my job. I experience "crashes" when I just can't function at all - it feels like if I don't lay down and close my eyes immediately I will (at best) pass out, or (at worst) die. Is there anything at all that can alleviate these episodes?

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Have you considered trying to locate a Covid Rehab program near you?
Here is a link to the program at Mayo: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-qa-podcast-covid-19-activity-rehabilitation-program
Here is a link to the Survivor Corps page where you may be able to locate a program near you: https://www.survivorcorps.com/pccc
I know how miserable it is to feel crushing fatigue from an illness, but taking one tiny step a day toward getting care can get you on the road to recovery.
Sue

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