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 group.

Hi @nant, I'm sorry that your doctors are unfamiliar with post-COVID syndrome (PCS). Mayo Clinic recognizes PCS as real. You may find this information about post COVID recovery and PSC from Mayo Clinic experts helpful when advocating for your care:
– Post COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/
– COVID for providers https://www.mayoclinic.org/medical-professionals/provider-relations/covid-19-resources-for-providers

I'm also tagging fellow COVID longhaulers @cilla21 @stoneydintheloo @rebalancemassage @kcartier @mjay8 @judyh147 @lauriekh @lynn27 @nataliem @jeanniesroom @ritesh to join you in this discussion. You can read some of their stories and tips in this related discussion:
– Any tips to help recovery for a COVID Long-Hauler?: https://connect.mayoclinic.org/discussion/long-hauler/

Post-COVID recovery can be a long road. I can imagine that you're frustrated and worried about the future. Have you discussed options with you HR department regarding a longer recovery period?

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@colleenyoung

Hi @nant, I'm sorry that your doctors are unfamiliar with post-COVID syndrome (PCS). Mayo Clinic recognizes PCS as real. You may find this information about post COVID recovery and PSC from Mayo Clinic experts helpful when advocating for your care:
– Post COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/
– COVID for providers https://www.mayoclinic.org/medical-professionals/provider-relations/covid-19-resources-for-providers

I'm also tagging fellow COVID longhaulers @cilla21 @stoneydintheloo @rebalancemassage @kcartier @mjay8 @judyh147 @lauriekh @lynn27 @nataliem @jeanniesroom @ritesh to join you in this discussion. You can read some of their stories and tips in this related discussion:
– Any tips to help recovery for a COVID Long-Hauler?: https://connect.mayoclinic.org/discussion/long-hauler/

Post-COVID recovery can be a long road. I can imagine that you're frustrated and worried about the future. Have you discussed options with you HR department regarding a longer recovery period?

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I'm very fortunate I work for a company that provides short term disability for their employees. I've exhausted all of my available Fmla, I believe we everyone in America is given three or four months of fmla job protection. My employers disability program kicks in along side fmla and pays us a percentage of my wage which helps tremendously. I only have about 30 days left of disability before I go on long term, also offered by the company I work for. Contact your hr department and see what services they offer,,you might be surprised. I've missed over 6 months out of the last 12 from long haul and or vaccine injury. I and my dr believes I may have developed Guillen Barr syndrome from either covid or the j and j. I went back to work three months after acute covid then work offered the j and j vaccine and I became sick two weeks after. I work in warehousing which is simply too physical for the symptoms I'm dealing with. They could lay me of or fire me legally since I'm out of fmla but my company is so short on employees, many dealing with the same issues as myself, I feel my job is secure. But most definitely keep hr in the loop with your progress and see what services are available. Fortunately the job market is booming so worst case scenario you'll find other employment but most importantly take it easy and give yourself the time to fully heal! Covid long haul is very real!

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I started a nicotinic acid/niacinimide regimen that has almost completely cleared up my long covid symptoms. Look up Demitry Kats on Twitter and Facebook. He's the leading researcher on this new promising protocol called the NAD+ theory. Also consult your dr before taking any new supplements. Good luck.

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@stoneydintheloo

I started a nicotinic acid/niacinimide regimen that has almost completely cleared up my long covid symptoms. Look up Demitry Kats on Twitter and Facebook. He's the leading researcher on this new promising protocol called the NAD+ theory. Also consult your dr before taking any new supplements. Good luck.

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Good morning. I am very glad that you are feeling the symptoms of long-covid relenting some. New protocols for treating any illnesses must be taken very seriously, as @stoneydintheloo says, it looks promising.

This looks good on paper but it is not yet a standard recommendation by the CDC. Also, one person's report doesn't necessarily mean that this protocol is the reason that long-covid symptoms are the only factor in improving his health. It could also be that his symptoms were getting better on their own.

Please be cautious when trying anything new like this.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7322475/

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@nant– It's nice to meet you under such frustrating circumstances. I'm very upset to hear that your doctor isn't up to date on long-term covid or would even poopoo and symptoms that come up.

You are doing the correct thing by taking care of your needs and being your own advocate. The links that Colleen has posted are great. Have you discussed your frustrations with your doctor about his lack of knowledge concerning longcovid?

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Do to pre-existing medical conditions pre covid now that I have PCS should I find an internist doctor or a different doctor and have a total diagnostic check up. Who would I see what should I ask. Are there doctors just dealing with this? I found a post covid clinic at KU med center but they won't even see me until I am 12 weeks out and I am not there until next month.

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@nant

Do to pre-existing medical conditions pre covid now that I have PCS should I find an internist doctor or a different doctor and have a total diagnostic check up. Who would I see what should I ask. Are there doctors just dealing with this? I found a post covid clinic at KU med center but they won't even see me until I am 12 weeks out and I am not there until next month.

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Hi Nan, Please let me ask if you have included any PCS clinics in your state or city? Have you reported your symptoms to VAERS? It is very important to report your symptoms to them. They keep track of responses and make sure that if there is an adverse reactions with a lot of people that they report it to the right people.

Vaccine Adverse Event Reporting System (VAERS): https://vaers.hhs.gov/

I think that your question is excellent and my answer is a big fat yes! Perhaps someone at a long covid clinic will do this?
https://www.survivorcorps.com/pccc

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@nant

Do to pre-existing medical conditions pre covid now that I have PCS should I find an internist doctor or a different doctor and have a total diagnostic check up. Who would I see what should I ask. Are there doctors just dealing with this? I found a post covid clinic at KU med center but they won't even see me until I am 12 weeks out and I am not there until next month.

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Yes, Nant, there are doctors who are specializes in post-COVID care. Mayo Clinic has a specialized COVID Activity Rehabilitation Program (CARP). You can learn more about it here:
– COVID Activity Rehabilitation Program (CARP) at Mayo Clinic https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/covid-activity-rehabilitation-program-carp-at-mayo-clinic/

To request an appointment, you can contact Mayo Clinic http://mayocl.in/1mtmR63

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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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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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@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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