1. < Post-COVID Recovery & COVID-19

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?

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lmschwartz2 | @lmschwartz2 | Sep 17, 2021
In reply to @sueinmn "I am going to "tag" as many of you in this discussion as I can. Post-Covid..." + (show)
@sueinmn

I am going to "tag" as many of you in this discussion as I can. Post-Covid symptoms can be devastating for many people. Some of you are in that group: @nataliem @nant @lynnryan @jennifergillan03 @cduncan123 @lmschwartz2 @lweed1956. Sorry if I missed anyone.

Every day, I try to find some bit of research, encouraging news, or a new strategy for helping people heal. Not everyone has access to a Post Covid care program, whether based on location or insurance coverage, and many have long waiting lists.

The good news is, doctors and other professionals continue to study and collaborate, and specialists are beginning to post guidance for our Primary Care Providers.
Here is one such article, which you may want to read and share with your providers. It provides some great guidelines for trying to "get back to normal" https://onlinelibrary.wiley.com/doi/full/10.1002/pmrj.12684
Sue

PS My daughter had Covid, and it took her a year to get over the worst of her fatigue and other issues; she still has "bad days" - the good news is she knows what she overdid, and the bad days only last for a day now, not a week or more.
I never had the virus, but went through a period of pain and crushing fatigue after a 2+ year lung infection, followed by 2 ortho surgeries and a huge systemic inflammatory flare. In 2020 I did rehab exactly as described, and the person who got me through it was an excellent PT. I would say that on 90% of my early recovery days, I had to FORCE myself to do each little thing, but it gradually began to improve. Now I must still be diligent about continuing my exercises and not overdoing. I had to come to recognize it as my "new normal". For example, I played with and cared for young grandsons for many hours yesterday, so today is a "quiet day" for me.

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Thank you Sue for sharing this article. I appreciate it.

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tempiej | @tempiej | Sep 18, 2021

I also have long COVID. It is frustrating because so many professionals know so little about it. I have many therapies and doctors as well. I want to get better and cannot return to work yet. I have used all PTO and short term disability. Long term disability is trying hard to deny my benefits, no pay now for 3 months making it hard plus had to start paying cobra. I have lung disease now as a result of COVID. Why do they make it so hard? I was never duck a day in my life before. It’s been 8 months now.

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3 replies
kcartier | @kcartier | Sep 19, 2021
In reply to @tempiej "I also have long COVID. It is frustrating because so many professionals know so little about..." + (show)
@tempiej

I also have long COVID. It is frustrating because so many professionals know so little about it. I have many therapies and doctors as well. I want to get better and cannot return to work yet. I have used all PTO and short term disability. Long term disability is trying hard to deny my benefits, no pay now for 3 months making it hard plus had to start paying cobra. I have lung disease now as a result of COVID. Why do they make it so hard? I was never duck a day in my life before. It’s been 8 months now.

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Hi I too am a long hauler. Never had lung issues until august 3 of last year when I was hospitalized for COVID Pneumonia…thank God for Mayo and their long haulers research and clinic,. I am finally getting a little bit of relief! I am over a year now but there is light at the end of this tunnel. Please stay strong and keep fighting for answers. The doctors at Mayo are fantastic and diligent to help people with this syndrome! Bless all of them and stay safe!

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2 replies
nataliem | @nataliem | Sep 19, 2021
In reply to @kcartier "Hi I too am a long hauler. Never had lung issues until august 3 of last..." + (show)
@kcartier

Hi I too am a long hauler. Never had lung issues until august 3 of last year when I was hospitalized for COVID Pneumonia…thank God for Mayo and their long haulers research and clinic,. I am finally getting a little bit of relief! I am over a year now but there is light at the end of this tunnel. Please stay strong and keep fighting for answers. The doctors at Mayo are fantastic and diligent to help people with this syndrome! Bless all of them and stay safe!

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kcartier, please share what has been most helpful in your post-covid recovery. We would love to know what has given you relief!

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1 reply
lynnryan | @lynnryan | Sep 19, 2021
In reply to @tempiej "I also have long COVID. It is frustrating because so many professionals know so little about..." + (show)
@tempiej

I also have long COVID. It is frustrating because so many professionals know so little about it. I have many therapies and doctors as well. I want to get better and cannot return to work yet. I have used all PTO and short term disability. Long term disability is trying hard to deny my benefits, no pay now for 3 months making it hard plus had to start paying cobra. I have lung disease now as a result of COVID. Why do they make it so hard? I was never duck a day in my life before. It’s been 8 months now.

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I’m also dealing with my Long Term Disability looking for any reason to discontinue paying me. Just dealing with them causes so much stress. I have been unable to work for over a year due to my PCSs, and they treat you like you are trying to scam the system. I loved working, and would give anything to be well and work again. No one would choose this this. Have you contacted an attorney to help you deal with them? I have one waiting in the wings to help when/if they do deny me.

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kcartier | @kcartier | Sep 19, 2021
In reply to @nataliem "kcartier, please share what has been most helpful in your post-covid recovery. We would love to..." + (show)
@nataliem

kcartier, please share what has been most helpful in your post-covid recovery. We would love to know what has given you relief!

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Hello, Breathing treatments before I start any activity, again when I am short of breath, and Rescue Inhaler twice a day helps with chest pain upon exertion..this also has been beneficial enough to get me moving which in return is helping. Although some days I am still quite just fried. So I rest on those days and push further on days I can. I also have anklyosing spondylitis which I have to take pain meds for which helps but the energy level is still low. But it’s much better than it was. Breathing treatments really help a lot. Up to four times a day! I am a stroke survivor as well and although I am not back to bowling on my league since I had to quit from the COVID pneumonia, I am able to walk my dog some days. And I swim in my above ground pool and float and exercise in the pool which helps the cardio and muscles return!
I highly recommend seeing a pulmonologist if you haven’t already, as my Hospital upon discharge did not refer me to one, my primary doctor put me on breathing treatments steroids and oxygen for two months then after not getting well they were at a loss! I fortunately ran across the article by Mayo about the long hauler issues and called and was put right in for full two days of testing and specialists! Which they were all great!! When I win the lottery I plan on using that money to open some Mayo Sub stations in areas where people desperately need quality medical care and don’t have the access! I also forgot to say that I was extremely anemic and had to get a 6 hr iron infusion. It’s getting better but is not great yet!

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1 reply
mothertheresa3 | @mothertheresa3 | Sep 19, 2021

I, too, am going on month 3 of PCS.
With each day, more health issues seems to appear. 😕
You are not alone, maybe together, we all can help find some answers and solutions.

REPLY
nataliem | @nataliem | Sep 20, 2021
In reply to @kcartier "Hello, Breathing treatments before I start any activity, again when I am short of breath, and..." + (show)
@kcartier

Hello, Breathing treatments before I start any activity, again when I am short of breath, and Rescue Inhaler twice a day helps with chest pain upon exertion..this also has been beneficial enough to get me moving which in return is helping. Although some days I am still quite just fried. So I rest on those days and push further on days I can. I also have anklyosing spondylitis which I have to take pain meds for which helps but the energy level is still low. But it’s much better than it was. Breathing treatments really help a lot. Up to four times a day! I am a stroke survivor as well and although I am not back to bowling on my league since I had to quit from the COVID pneumonia, I am able to walk my dog some days. And I swim in my above ground pool and float and exercise in the pool which helps the cardio and muscles return!
I highly recommend seeing a pulmonologist if you haven’t already, as my Hospital upon discharge did not refer me to one, my primary doctor put me on breathing treatments steroids and oxygen for two months then after not getting well they were at a loss! I fortunately ran across the article by Mayo about the long hauler issues and called and was put right in for full two days of testing and specialists! Which they were all great!! When I win the lottery I plan on using that money to open some Mayo Sub stations in areas where people desperately need quality medical care and don’t have the access! I also forgot to say that I was extremely anemic and had to get a 6 hr iron infusion. It’s getting better but is not great yet!

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Thank you for your response! And after you win the lottery, please open a Mayo sub station in western NY - we need something!

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1 reply
kcartier | @kcartier | Sep 20, 2021
In reply to @nataliem "Thank you for your response! And after you win the lottery, please open a Mayo sub..." + (show)
@nataliem

Thank you for your response! And after you win the lottery, please open a Mayo sub station in western NY - we need something!

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Will do!!! I am originally from Long Island!

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kcartier | @kcartier | Sep 20, 2021

Yes! Tell them to research the post COVID syndrome and to contact Mayo Clinic for information, the first thing the doctors there told me was we believe you and your symptoms are real and we are going to help you! Then they take a history and then a current history of what is occurring to you since the virus then they develop a plan and battery of tests to run then they throughly explain everything and ask that your current doctors follow their recommendation of course of treatment for you. If your doctors won’t follow it, Mayo will do it! Hang in there, stay strong and print articles about the Post COVID syndrome or COVID long haulers! Make them read it and listen to you. The doctors are frustrated because they just don’t know what to do. Hang in there please!

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