Any tips to help recovery for a COVID Long-Hauler?

Posted by Cilla21 @cilla21, May 13, 2021

I was diagnosed with COVID-19 at the end of Feb 2021. Nearly three months later, neither my taste nor smell has been fully restored. My husband also tested positive and was completely out of it for one full week. He could not even get out of bed. My case seemed to be mild. Though I felt ill, I was not bed-ridden nor did I feel debilitated. Most of my activities (household and work) were not halted. My husband has zero lingering effects from his infection, meanwhile I am still experiencing chills, headaches, fatigue, and body aches on and off weekly. Additionally, I'm undergoing testing for heart valve issues. It's becoming increasingly difficult to tolerate these lasting symptoms with no end in sight. Any suggestions/tips to aid in a faster recovery would be welcomed and very much appreciated.

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

@sueinmn

Hello and welcome to Mayo Connect. We are a community of people living with a wide variety of conditions and diseases, who share our stories and help one another along the way. We are not medical professionals, and do not provide medical advice, but we can share our experiences and talk about what has worked or not for us. We can also encourage you to be your own best advocate in getting the help you need.

Perhaps we came to your attention through one of the recent articles about Mayo Clinic's study of the long term effects of Covid or the Mayo Covid Rehab Program. Here is and article with info from Dr Poland: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

And another about the widely varied long-term effects, and some efforts to help people fully recover: https://newsnetwork.mayoclinic.org/discussion/fatigue-perceived-cognitive-impairment-and-mood-disorders-associated-with-post-covid-19-syndrome/

I'm sure over the next few days you will hear from others on Connect about their long-term issues. My daughter had a moderately severe case last March and April that did not put her in the hospital, but caused many aftereffects. She has now reached about 95% recovery after 13 months, but still experiences brain fog and fatigue if she doesn't get enough rest.

Here is a very early report of long haul syndrome, and we are learning more every day. https://connect.mayoclinic.org/discussion/post-acute-covid-19-syndrome/

Good luck with your recovery. As my daughters who are both nurses said again today, they tell everyone to get vaccinated because even with a mild case of Covid, after effects and new illnesses can be unpredictable, devastating and long-term.
Sue

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I had covid back in march. Since then, and to this day, after my smell and taste came back partially, I've been experiencing many weird and annoying symptoms.

First, I have a wierd "cogging" in my arms and vastus lateralis that happens on the eccentric. I've also lost 40% of my strength. I'm a powerlifter and have a max squat of 215 but I am struggling with 135. When I go down stairs, the leg with the weight shakes.

Second, although I am a 59 year old femaie, I've never had hot flashes but now whenever I strain at all, my body quickly overheats for about 10 seconds.

Like others though, I have trouble getting in enough air at times but have had my lungs listened to and were fine. I also get exhausted after a days work.

I am experimenting with different supplements and techniques. I take everyday a mixture of tumeric, black and ceyenne pepper, cinnamon, ginger with honey and lemon.
I also take vitamin D and magnesium and coQ10
I'm starting to do sprints to force my lungs to open up more.
I bought a nebulizer and mix 3 parts H2O2 with 1 part water and use once a day. I read it can kill viruses but my doctor has said the covid that's probably in my brain is already dead. Its a little creepy to say the least.

I wish I just knew what is causing these symptoms, how long will they last or will they ever go away.

-Christina

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@rebalancemassage

I had covid back in march. Since then, and to this day, after my smell and taste came back partially, I've been experiencing many weird and annoying symptoms.

First, I have a wierd "cogging" in my arms and vastus lateralis that happens on the eccentric. I've also lost 40% of my strength. I'm a powerlifter and have a max squat of 215 but I am struggling with 135. When I go down stairs, the leg with the weight shakes.

Second, although I am a 59 year old femaie, I've never had hot flashes but now whenever I strain at all, my body quickly overheats for about 10 seconds.

Like others though, I have trouble getting in enough air at times but have had my lungs listened to and were fine. I also get exhausted after a days work.

I am experimenting with different supplements and techniques. I take everyday a mixture of tumeric, black and ceyenne pepper, cinnamon, ginger with honey and lemon.
I also take vitamin D and magnesium and coQ10
I'm starting to do sprints to force my lungs to open up more.
I bought a nebulizer and mix 3 parts H2O2 with 1 part water and use once a day. I read it can kill viruses but my doctor has said the covid that's probably in my brain is already dead. Its a little creepy to say the least.

I wish I just knew what is causing these symptoms, how long will they last or will they ever go away.

-Christina

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Christina - I don't know where you are located, but in our metro, there are a number of post-Covid rehab centers and studies. My PT is running one that includes exercise, meditation, and brain stimulating activities. I don't have complete details, but I would think they are using nutrition and supplements as well.
Sue

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@sueinmn

Christina - I don't know where you are located, but in our metro, there are a number of post-Covid rehab centers and studies. My PT is running one that includes exercise, meditation, and brain stimulating activities. I don't have complete details, but I would think they are using nutrition and supplements as well.
Sue

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I’m in Albany Ny so I’m close to Albany Med. I will inquire. Thanks!

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@rebalancemassage

I had covid back in march. Since then, and to this day, after my smell and taste came back partially, I've been experiencing many weird and annoying symptoms.

First, I have a wierd "cogging" in my arms and vastus lateralis that happens on the eccentric. I've also lost 40% of my strength. I'm a powerlifter and have a max squat of 215 but I am struggling with 135. When I go down stairs, the leg with the weight shakes.

Second, although I am a 59 year old femaie, I've never had hot flashes but now whenever I strain at all, my body quickly overheats for about 10 seconds.

Like others though, I have trouble getting in enough air at times but have had my lungs listened to and were fine. I also get exhausted after a days work.

I am experimenting with different supplements and techniques. I take everyday a mixture of tumeric, black and ceyenne pepper, cinnamon, ginger with honey and lemon.
I also take vitamin D and magnesium and coQ10
I'm starting to do sprints to force my lungs to open up more.
I bought a nebulizer and mix 3 parts H2O2 with 1 part water and use once a day. I read it can kill viruses but my doctor has said the covid that's probably in my brain is already dead. Its a little creepy to say the least.

I wish I just knew what is causing these symptoms, how long will they last or will they ever go away.

-Christina

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Hello @rebalancemassage and welcome to Mayo Clinic Connect. I am sorry to hear of your on-going COVID symptoms as it is surely difficult when you are used to such great health and physical performance. @sueinmn mentioned a great option for you to consider and it sounds like you are interested.

Will you please come back to keep us posted on your progress and what you might find out from Albany Med?

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@rebalancemassage

I’m in Albany Ny so I’m close to Albany Med. I will inquire. Thanks!

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@rebalancemassage- I would also like to welcome you to Mayo Clinic Connect. Long Haulers have a very tough time. But there are clinics popping up all over the country to help. This is yours:

https://www.survivorcorps.com/pccc-ny
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I want to encourage all long-haulers to seek medical attention for their symptoms in a Post-COVID recovery program. There are many clinics and hospitals that are being set up and are running to help long-haulers. A large grassroots effort is underway to establish these clinics and they are in many states and counties.

https://www.survivorcorps.com/

There are treatments that are only available in clinic/hospital settings that can limit your time being unwell. Perhaps your personal PCP isn't aware of these clinics so you need to do some research. When you find out then make sure to tell your doctor because then he can pass on this information to others that need it.

If you are finding it difficult in making any headway in your recovery please seek help. Delaying might mean a longer recovery period.

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@merpreb

@rebalancemassage- I would also like to welcome you to Mayo Clinic Connect. Long Haulers have a very tough time. But there are clinics popping up all over the country to help. This is yours:

https://www.survivorcorps.com/pccc-ny

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Thank you! I’ll be calling Monday for an appointment and will definitely update here.

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@colleenyoung

Hi @cilla21, I'd like to add my welcome. It's such a mystery why some people experience long-term side effects and others don't. The comparison of your husband's experience with COVID and yours is a perfect example of that. I encourage you to follow this blog with Mayo Clinic experts who are researching and following post-COVID recovery.

- Post-COVID Recovery https://connect.mayoclinic.org/blog/post-covid-recovery/

I'd also like to invite fellow long-haulers to join this discussion like @abelmarcelo @stoneydintheloo @barbaracasey @kimesita and @lsmorgan

The medical understanding of post-COVID recovery is learning more and more every day, but so much is as yet unknown. Are you being seen at a large medical center with experts in infectious diseases and COVID?

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Hi @colleenyoung, thanks for your reply. I am being treated by top-notch physicians. This experience has been absolutely fascinating, frustrating yet intriguing. I'll be following the blog you suggested for sure. Thanks, again.

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@sueinmn

Hello and welcome to Mayo Connect. We are a community of people living with a wide variety of conditions and diseases, who share our stories and help one another along the way. We are not medical professionals, and do not provide medical advice, but we can share our experiences and talk about what has worked or not for us. We can also encourage you to be your own best advocate in getting the help you need.

Perhaps we came to your attention through one of the recent articles about Mayo Clinic's study of the long term effects of Covid or the Mayo Covid Rehab Program. Here is and article with info from Dr Poland: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

And another about the widely varied long-term effects, and some efforts to help people fully recover: https://newsnetwork.mayoclinic.org/discussion/fatigue-perceived-cognitive-impairment-and-mood-disorders-associated-with-post-covid-19-syndrome/

I'm sure over the next few days you will hear from others on Connect about their long-term issues. My daughter had a moderately severe case last March and April that did not put her in the hospital, but caused many aftereffects. She has now reached about 95% recovery after 13 months, but still experiences brain fog and fatigue if she doesn't get enough rest.

Here is a very early report of long haul syndrome, and we are learning more every day. https://connect.mayoclinic.org/discussion/post-acute-covid-19-syndrome/

Good luck with your recovery. As my daughters who are both nurses said again today, they tell everyone to get vaccinated because even with a mild case of Covid, after effects and new illnesses can be unpredictable, devastating and long-term.
Sue

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Thanks so much, @sueinmn. This information is helpful.

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@weeds

Dear Long-Hauler-I was never diagnosed with Covid, but have been experiencing long-hauler symptoms. I never had a fever, or cough so only went once to get tested when I had a sore throat-and the test came back negative, though it did recommend to get re-tested.
About a month later, I began having less and less energy, and body aches, joint pain and fatigue. If I got up at night, it felt like I had run a marathon when I got back in bed. My sleep pattern was totally disrupted. But the fatigue was the worst. I went from daily three-mile walks to excessive fatigue after a half-block, then had to quit walking altogether. The fatigue and brain fog made me feel like I wasn’t myself at all. Now and then I would have a bit of energy and try to do things, then pay the price the following day and not be able to get out of bed. This went on for over four months. Finally now, I am starting to feel better and am back up to a mile and a half walks. Mind you, I have never had a diagnosis of ANY kind, Covid or not. I had every test imaginable, but nothing ever found. I feel it is post-covid but I had the vaccine in February so there is no way to tell if I ever had Covid. I now feel like myself again, but there were times when I thought it would never end.
I hope it helps knowing that there IS light at the end of the tunnel.

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Thanks so much for the encouraging words, @weeds. Yes! I choose believe I'll make a full recovery. Your reminder to stay the course is greatly appreciated.

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