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

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY

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?

REPLY
@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?

Jump to this post

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.

REPLY

Dear@stoney, ask your doctor to prescribe Ivermectin. It truly reverses the effects of Covid in many people. Please research this drug.

REPLY
@thomason

Dear@stoney, ask your doctor to prescribe Ivermectin. It truly reverses the effects of Covid in many people. Please research this drug.

Jump to this post

Ivermectin is used to treat or prevent parasites in animals.

Ivermectin is being researched in clinical trials for its possible use for COVID-19, but as yet there is no evidence of its efficacy. Here is the most recent information. https://www.who.int/news-room/feature-stories/detail/who-advises-that-ivermectin-only-be-used-to-treat-covid-19-within-clinical-trials

Please read:
– Why You Should Not Use Ivermectin to Treat or Prevent COVID-19 https://www.fda.gov/consumers/consumer-updates/why-you-should-not-use-ivermectin-treat-or-prevent-covid-19

Merck, the pharmaceutical company that produces ivermectin and who has the most to gain from its use for COVID, advises against it use until there is more evidence. https://www.merck.com/news/merck-statement-on-ivermectin-use-during-the-covid-19-pandemic/

REPLY

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.

REPLY
@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.

Jump to this post

@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?

REPLY

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.

REPLY
@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.

Jump to this post

@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.

REPLY
@colleenyoung

@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.

Jump to this post

@roselee403, Colleen- Roselee- I concur that my response to you was not my finest post. I wasn't trying to put you down in anyway and I'm sorry that you felt this way.

REPLY
Please sign in or register to post a reply.