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.

@lmschwartz2

Thank you for sharing...I am in a similar sitation and having a hard time getting my Dr to take me seriously. Going to see a new Dr at a new healthcare clinic next month and hoping for the best.

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Hello @lmschwartz2 and welcome to Mayo Clinic Connect. It is always helpful to find others who share your experience and/or at least understand it. I think your plan to seek another doctor who may be able to better support you sounds reasonable and smart!

If you'd like any additional resources, this may be helpful.

- Post Covid-19 Conditions:
https://www.mayoclinic.org/coronavirus-covid-19/post-covid-19-conditions
What has been your symptoms post-COVID and how long have you been experiencing it/them?

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@amandajro

Hello @lmschwartz2 and welcome to Mayo Clinic Connect. It is always helpful to find others who share your experience and/or at least understand it. I think your plan to seek another doctor who may be able to better support you sounds reasonable and smart!

If you'd like any additional resources, this may be helpful.

- Post Covid-19 Conditions:
https://www.mayoclinic.org/coronavirus-covid-19/post-covid-19-conditions
What has been your symptoms post-COVID and how long have you been experiencing it/them?

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Fatigue, weakness, exhaustion, muscle weakness, joint pain, headaches (migraines), light sensitive, FOG, anxiety, depression mood swings, panic attacks, sleep issues, sometimes SOB and palpitations. So yes I am a mess. I just want some semblance of normal. If I have a "good day " or two I pay for it with several rough days. Never know till I wake up what kind of day it is going to be and even then can change on a dime.

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After my first vaccination Moderna, I had none stop chills for 3+ hours followed by a severe headache and lymph node swelling. When the headache didn’t go away I took Aleve. The headache went away. My question is will my second vaccination be as bad or worse?

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I have been suffer with Long Covid since September 2020. Are there any resources at the Mayo for treatment options.

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@amandajro

Hello @lmschwartz2 and welcome to Mayo Clinic Connect. It is always helpful to find others who share your experience and/or at least understand it. I think your plan to seek another doctor who may be able to better support you sounds reasonable and smart!

If you'd like any additional resources, this may be helpful.

- Post Covid-19 Conditions:
https://www.mayoclinic.org/coronavirus-covid-19/post-covid-19-conditions
What has been your symptoms post-COVID and how long have you been experiencing it/them?

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Thank you for your response. I have found alot of good information on May Clinic Connect. In response to your question...

My Covid Background: I rec'd my first Pfizer vaccine on March 27th. On April 3rd started feeling like I was getting a cold and within a couple days had a fever, extreme muscle aches and joint pain. I couldn't do anything but sleep. I didn't have lung and breathing issues but extreme sinus pain, head congestion and earaches and ear ringing. I lost my taste and smell. Tested positive for Covid on April 6th. On April 12th my PCP put me on a ZPac and Predisone. On May 4th went for follow up visit and was prescribed Fluticasone Propionate mcg for fluid in my left ear. Rec'd my second Pfizer dose on May 5th

My Post Covid Symptoms: Constant ringing in my ears - Left worse then right. Right ear is still achy and gets worse when I am rundown. Still no taste or smell. Get fatigued easily. Have muscle weakness and mild joint pain. Have horrible brain fog, difficulty focusing and remembering. The brain fog makes if difficult to get through the workday and a chore sometimes I wonder how I will continue to keep my job. I have improved my diet, I drink lots of water, I have to get a min of 9 hours of sleep and I try to exercise (as minimal as it may be) each day. This is what I need to do just to get through the day. If I don't, all of the above symptoms worsen and quickly.

Thank you again for your response and this community.

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@nant

Fatigue, weakness, exhaustion, muscle weakness, joint pain, headaches (migraines), light sensitive, FOG, anxiety, depression mood swings, panic attacks, sleep issues, sometimes SOB and palpitations. So yes I am a mess. I just want some semblance of normal. If I have a "good day " or two I pay for it with several rough days. Never know till I wake up what kind of day it is going to be and even then can change on a dime.

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There are MANY of us out here who understand exactly what you're talking about. It's a life-changing condition, and no one has the answers for a cure. It's not just long-COVID. It's a long haul from other viruses, too, which means it's been around for decades - maybe centuries. Where is the research and help? I have been living this way for 2 years, and my suggestions are to eat as healthy as possible, do what you can to improve your sleep (this has been a real challenge for me, and I have resorted to medication, which I didn't want to do), and try to avoid stress at all costs. I still have many bad days and bad weeks, but I think my good days have increased and I'm going to keep trying, no matter what. That's all you can do until the medical community comes up with some answers.

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@bluff

After my first vaccination Moderna, I had none stop chills for 3+ hours followed by a severe headache and lymph node swelling. When the headache didn’t go away I took Aleve. The headache went away. My question is will my second vaccination be as bad or worse?

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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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@lweed1956

Hi everyone: I had covid 19 and bi-lateral pneumonia in May. Was in hospital for 5 days and received remdesiver iv’s for 5 days. Have had tachycardia ever since. My dr put me on a beta blocker to keep my heart rate down. I can’t do anything or my heart rate goes wacky. Of course when that happens I have such anxiety and feel just awful. Have been waiting over 2 months for an appt with a cardiologist. Saw my local physician yesterday and she did put me on an anti anxiety med. PTL I think the anxiety is the worst because when my heart starts racing of course I think I’m having a heart attack. Prayers for everyone going through this!!

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May I ask what they put you on? I’m in same boat with you!

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@cduncan123

May I ask what they put you on? I’m in same boat with you!

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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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@nataliem

There are MANY of us out here who understand exactly what you're talking about. It's a life-changing condition, and no one has the answers for a cure. It's not just long-COVID. It's a long haul from other viruses, too, which means it's been around for decades - maybe centuries. Where is the research and help? I have been living this way for 2 years, and my suggestions are to eat as healthy as possible, do what you can to improve your sleep (this has been a real challenge for me, and I have resorted to medication, which I didn't want to do), and try to avoid stress at all costs. I still have many bad days and bad weeks, but I think my good days have increased and I'm going to keep trying, no matter what. That's all you can do until the medical community comes up with some answers.

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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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