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

Posted by Cilla21 @cilla21, May 13 3:55pm

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.

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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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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@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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I'm glad you are beginning to feel better. Be good to yourself! You certainly have all the symptoms of being a Covid long-hauler.
Sue

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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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@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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I'm seeing a hematologist on the 18th who will hopefully shed some light on my elevated eosinophils and low segs. So far I've had to see a different dr for each symptom. Even a podiatrist for my foot pain as I can only stand for about 2 hours before it gets unbearable. He suggested a neurologist which seems to make more sense. My job is comparable to a daily hardcore workout which leads to post exertional malaise.I contracted covid 11/7 and from what I've read from various long covid Facebook groups it could take a year or more before I'm able to work at the level I could precovid. I'm thankful my employer offers both short and long term disability to hopefully provide enough time to heal. I love my job but it's simply too intense to do safely with the amount of symptoms I'm still experiencing.

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I recommend seeing a naturopath, and not someone fresh out of school. Mine has helped tremendously. There are other viruses that are known to produce "post viral syndrome." It is not a brand new concept and coronaviruses have been around since the beginning of time. There are things that can help.

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@roselee403

I recommend seeing a naturopath, and not someone fresh out of school. Mine has helped tremendously. There are other viruses that are known to produce "post viral syndrome." It is not a brand new concept and coronaviruses have been around since the beginning of time. There are things that can help.

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@roselee403– Good morning and welcome to Mayo Clinic Connect and the Covid-19 group. I understand the principles of homeopathy, acupuncture, and naturopathy. But these principles aren't based on sound scientific research or medicine. Naturopathy is an alternative medicine based on the theory that diseases can be successfully treated or prevented without the use of drugs, by techniques such as control of diet, exercise, and massage.

Have you had a bad experience with conventional science based medicine?

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I'm afraid you do not, in fact, understand the principles, since you insinuate it is not "science-based." Everyone has had positive and negative experiences with conventional medicine, that is beside my point. I'm not suggesting that one avoid conventional medicine altogether, either, as you also insinuate. Naturopaths learn all the same science that MD's learn and can prescribe conventional medicine and pharmaceuticals. Parts of your statement are denigrating and offensive.

If this discussion is not open-minded then it is less likely to help people. This is supposed to be about people discussing their experiences, helping each other. My naturopath has helped me. I'm not suggesting any particular treatments to anyone, although they have noticeably worked for me. It's sad that I can't suggest someone try and approach that has worked for me without someone coming on here climbing they already know that what I'm doing is not "scientific " Science is a method, not a dogma. I suggest looking into naturopathy or actually speaking with one before declaring that you know what they are about and it is wrong.

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@roselee403

I'm afraid you do not, in fact, understand the principles, since you insinuate it is not "science-based." Everyone has had positive and negative experiences with conventional medicine, that is beside my point. I'm not suggesting that one avoid conventional medicine altogether, either, as you also insinuate. Naturopaths learn all the same science that MD's learn and can prescribe conventional medicine and pharmaceuticals. Parts of your statement are denigrating and offensive.

If this discussion is not open-minded then it is less likely to help people. This is supposed to be about people discussing their experiences, helping each other. My naturopath has helped me. I'm not suggesting any particular treatments to anyone, although they have noticeably worked for me. It's sad that I can't suggest someone try and approach that has worked for me without someone coming on here climbing they already know that what I'm doing is not "scientific " Science is a method, not a dogma. I suggest looking into naturopathy or actually speaking with one before declaring that you know what they are about and it is wrong.

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@roselee403, you're quite right that naturopathy and other integrative approaches are evidence-based and the body of evidence is continually growing. More than 30% of Americans adults report using health care approaches not typically associated with conventional medicine, according to the National Center for Health Statistics. Doctors are also embracing evidence-based alternative therapies, often combining them with mainstream therapies to treat disease and maintain health — an approach called integrative medicine.

Mayo Clinic supports the use of and practices integrative medicine. https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/about/pac-20393581

– Integrative medicine: Different techniques, one goal https://www.mayoclinic.org/tests-procedures/complementary-alternative-medicine/in-depth/alternative-medicine/art-20045267

@merpreb, some therapies and practices are touted to prevent, care and cure under the banner of alternative therapy that are not evidence based. People spend thousands of dollars on hope. My preferred website to verify the validity of an integrative medicine, supplement or therapy is the National Center for Complementary and Integrative Health.

– National Center for Complementary and Integrative Health https://www.nccih.nih.gov/
"The mission of NCCIH is to determine, through rigorous scientific investigation, the fundamental science, usefulness, and safety of complementary and integrative health approaches and their roles in improving health and health care."

With the lasting effects of COVID-19 and the long road to recovery, researchers are investigating all approaches, including naturopathy and other integrative medicine practices and practitioners.

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Hello @roslee403 & @merpreb I would like to "dip my toe" into the discussion of alternative and complimentary medicines very gently here.

I have found much help for my health issues from alternative sources such as acupuncture, massage therapy, targeted PT, supplements, etc. Practitioners of these styles of medicine often use a very different model compared to the "20 minutes and done" that many of our physicians are forced to use, and are able to devote more time to the whole person.

One problem is that many of these alternatives are lightly regulated or not regulated, and many of the articles promoting them are just poorly disguised advertisements, not backed by science. One need only think of everything you see touting "cures" for baldness – and of all the people you see who are still losing their hair.

Another concern is that people often turn to these in desperation, after conventional medicine has failed to help, or they have been dismissed by their doctors. That can lead to grasping at any treatment or cure that seems to offer hope, whether proven or not.

So I love Colleen's (@colleenyoung) list of resources to check before adopting an alternative practice. Many of us have a number of underlying conditions or take medications that can interact with alternative approaches, so careful research is needed, and for that I tend to rely on NIH, consultation with our clinic's doctor of pharmacy, and sometimes my own primary provider.

I often tell people on Mayo Connect that we are here to become their own best advocate for their health care. That includes learning to keep an open mind to options, take a cautious approach to making choices, and do research using reliable sources. Of course, you can always ask here for help finding that research information – some of us are real nerds, who love to dive in and help you find it.

Good luck fighting the aftereffects of Covid. More clinics are opening every week, usually within teaching hospitals, but also in many clinics, to help people regain their health and get back to their lives.

Sue

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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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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

REPLY
@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

REPLY
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