1. < Post-COVID Recovery & COVID-19

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.

leslieter | @leslieter | Jun 30, 2022

Hi. I’m 58 and in January I had a bad case of COVID. I wasn’t hospitalized thankfully but I have asthma and I struggled with a severe cough and breathlessness among other symptoms. It took 2 weeks to start feeling a little better. However I have been dealing with the extreme fatigue, body aches and brain fog ever since.
Just for clarity of my situation: for over 30 years I have dealt with severe back pain due to a car wreck in my 20’s. After years of painful treatment I went to Mayo. After more procedures I was diagnosed with CSS (Central Sensitization Syndrome) and the only options left for my back is fusion or another equally unpleasant procedure that may not help.🤷🏼‍♀️ Due to the back pain I have learned that when I exert myself, like gardening which I love, I’ll be in more pain for a few days after. I’ve learned to live with this.
However now if I have a day when I don’t have immobilizing fatigue and try to work in my garden, the next few days I’m basically useless. Not only am I in pain but now I’m so exhausted I have a hard time going from the bed to a chair in the other room. The frustration and anger I feel I realize are not helpful but it’s difficult not to feel it.
I’m a retired mental health counselor and have spent 35 years relying on my clear memory and ability to observe detail easily. Since January I struggle to remember a shopping list! Brain fog is the perfect description. The memory is in there I just have to sift through the fog to find it.
I’ve always been an avid reader but now have to reread pages over and over to retain the information.
All this to say I’m thankful to have found this group. It has been validating to read your experiences because I feel less alone. My family is supportive and patient but it’s not the same as speaking to people who are living with this. Thank you.

REPLY
2 replies
earthangel | @earthangel | Jul 1, 2022

I wish we had a Covid Clinic near me that I could have reached out to for help. My symptoms have stumped a few specialists with little help. They are at a loss of what to try next. They have began stating I need to go to a Covid Clinic and see if they can help diagnosis what is causing my multiple systems symptoms.

Recently, I am having issues with my cervical spine. The other day I read about studies published on the NIH website, about how covid could speed aging of people with Long Covid. I looked at my multiple systems and began looking at them as a much older person having the issues. It began making sense why multiple systems are having issues.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 8, 2022
In reply to @leslieter "Hi. I’m 58 and in January I had a bad case of COVID. I wasn’t hospitalized..." + (show)
@leslieter

Hi. I’m 58 and in January I had a bad case of COVID. I wasn’t hospitalized thankfully but I have asthma and I struggled with a severe cough and breathlessness among other symptoms. It took 2 weeks to start feeling a little better. However I have been dealing with the extreme fatigue, body aches and brain fog ever since.
Just for clarity of my situation: for over 30 years I have dealt with severe back pain due to a car wreck in my 20’s. After years of painful treatment I went to Mayo. After more procedures I was diagnosed with CSS (Central Sensitization Syndrome) and the only options left for my back is fusion or another equally unpleasant procedure that may not help.🤷🏼‍♀️ Due to the back pain I have learned that when I exert myself, like gardening which I love, I’ll be in more pain for a few days after. I’ve learned to live with this.
However now if I have a day when I don’t have immobilizing fatigue and try to work in my garden, the next few days I’m basically useless. Not only am I in pain but now I’m so exhausted I have a hard time going from the bed to a chair in the other room. The frustration and anger I feel I realize are not helpful but it’s difficult not to feel it.
I’m a retired mental health counselor and have spent 35 years relying on my clear memory and ability to observe detail easily. Since January I struggle to remember a shopping list! Brain fog is the perfect description. The memory is in there I just have to sift through the fog to find it.
I’ve always been an avid reader but now have to reread pages over and over to retain the information.
All this to say I’m thankful to have found this group. It has been validating to read your experiences because I feel less alone. My family is supportive and patient but it’s not the same as speaking to people who are living with this. Thank you.

Jump to this post

Hi @leslieter, I'd like to introduce you to @rwinney and @naturegirl5.
Les, I can imagine how deflating and frustrating it is to experience this additional blow of long COVID. When you were diagnosed with Central Sensitization Syndrome at Mayo, did you also attend the Pain Rehabilitation Center? If yes, it sounds like you may have to unpack your notes from that experience again. They apply to managing long COVID too.

I'd also like to guide you to a couple of other discussions and an expert blog to provide further connections and validation to your experience:
- Stalled Long COVID Recovery: What helps you get back on track? started by @ldropps https://connect.mayoclinic.org/discussion/stalled-recovery/
- Early Care Tips for COVID Longhaulers by Dr. Vanichkachorn https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/early-care-tips-for-covid-longhaulers/

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leslieter | @leslieter | Jul 8, 2022

Hi Colleen. Thank you for your thoughts and suggestions. I have been applying many of the techniques discussed in that program. Because of my counseling background I have been practicing and teaching many of those for over 30 years. I will definitely look into the discussions and blogs and contact the 2 members you mentioned.
Thank you so much for reaching out. It helps to feel part of a community and not alone in this.

REPLY
azdreamer | @azdreamer | Jul 9, 2022
In reply to @sueinmn "Hello and welcome to Mayo Connect. We are a community of people living with a wide..." + (show)
@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

Jump to this post

Why are there no long Covid programs at Mayo Clinic Phoenix/Scottsdale?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 9, 2022
In reply to @azdreamer "Why are there no long Covid programs at Mayo Clinic Phoenix/Scottsdale?" + (show)
@azdreamer

Why are there no long Covid programs at Mayo Clinic Phoenix/Scottsdale?

Jump to this post

Mayo Connect is a community of people living with a variety of conditions. We are not Mayo staff and do not have direct access to ask such a question, but... we have learned that treating long Covid is a staff intensive and evolving clinical practice. My guess would be that they do not have sufficient staffing in the appropriate departments to add another program at this time.
Banner Health System in Arizona offers a comprehensive post-Covid care program, is this someone you could contact?
https://www.bannerhealth.com/staying-well/health-and-wellness/wellness/covid/long-covid-treatment-program
Sue

REPLY
1 reply
azdreamer | @azdreamer | Jul 9, 2022
In reply to @sueinmn "Mayo Connect is a community of people living with a variety of conditions. We are not..." + (show)
@sueinmn

Mayo Connect is a community of people living with a variety of conditions. We are not Mayo staff and do not have direct access to ask such a question, but... we have learned that treating long Covid is a staff intensive and evolving clinical practice. My guess would be that they do not have sufficient staffing in the appropriate departments to add another program at this time.
Banner Health System in Arizona offers a comprehensive post-Covid care program, is this someone you could contact?
https://www.bannerhealth.com/staying-well/health-and-wellness/wellness/covid/long-covid-treatment-program
Sue

Jump to this post

Thank you for your reply. I will contact Banner.

REPLY
mamabear22 | @mamabear22 | Jul 9, 2022

I have experienced a lot of relief from taking the mushroom Agarikon, by Host Defense. It has been used for decades to treat the heavy hitting viruses. It helped me recover from intense fatigue. I also take a group of additional supplements that have assisted me in Long Haul recovery: vitamin C, resveratrol, turmeric, quercitin, zinc, vitamin D, fish oil, are some the main ones. You really have to try to reduce inflammation and support immune system.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Jul 12, 2022
In reply to @leslieter "Hi. I’m 58 and in January I had a bad case of COVID. I wasn’t hospitalized..." + (show)
@leslieter

Hi. I’m 58 and in January I had a bad case of COVID. I wasn’t hospitalized thankfully but I have asthma and I struggled with a severe cough and breathlessness among other symptoms. It took 2 weeks to start feeling a little better. However I have been dealing with the extreme fatigue, body aches and brain fog ever since.
Just for clarity of my situation: for over 30 years I have dealt with severe back pain due to a car wreck in my 20’s. After years of painful treatment I went to Mayo. After more procedures I was diagnosed with CSS (Central Sensitization Syndrome) and the only options left for my back is fusion or another equally unpleasant procedure that may not help.🤷🏼‍♀️ Due to the back pain I have learned that when I exert myself, like gardening which I love, I’ll be in more pain for a few days after. I’ve learned to live with this.
However now if I have a day when I don’t have immobilizing fatigue and try to work in my garden, the next few days I’m basically useless. Not only am I in pain but now I’m so exhausted I have a hard time going from the bed to a chair in the other room. The frustration and anger I feel I realize are not helpful but it’s difficult not to feel it.
I’m a retired mental health counselor and have spent 35 years relying on my clear memory and ability to observe detail easily. Since January I struggle to remember a shopping list! Brain fog is the perfect description. The memory is in there I just have to sift through the fog to find it.
I’ve always been an avid reader but now have to reread pages over and over to retain the information.
All this to say I’m thankful to have found this group. It has been validating to read your experiences because I feel less alone. My family is supportive and patient but it’s not the same as speaking to people who are living with this. Thank you.

Jump to this post

@leslieter Hello there, I'm Rachel, it's nice to meet you. You definitely have a variety of obstacles, I'm sorry to hear that, but you came to right place.

Having experience in the mental health field must allow you to see more clearly (less the brain fog presently) the levels of chronic pain and assess yourself. Sometimes, however, when you're in your own soup, you're in your own soup. Forgive the expression, it's from an old co-worker of mine that said it to me when I was recognizing my chronic situations and mental health issues but couldn't find my way around them.

I live with CSS and understand how challenging it must be for you to manage symptoms. Covid adding to it must be frustrating. I'm glad you found this group.

Mayo's Pain Rehabilitation Center helped me tremendously learn how to manage physically, emotionally and behaviorally. PRC gave me self-managing tools, resources and a plan to work towards achieving better life quality, which was what I was lacking prior. You mentioned overdoing and not properly managing for your best outcome. PRC defines that as push/crash. Here's information about the program:

http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-204

Also, I'm curious if you've ever watched this video by Mayo's Dr. Sletten from the PRC about CSS? It's amazing and may help give some inspiration or direction:

If there is anything I can help you with or share more of, please don't hesitate to ask. One of the many tools I learned at rehab was to "pull in the viewfinder" and live in the next 5 minutes. Some days it comes down to that. Do you have any tips that have helped you get through the next 5 minutes?

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pattysgirl | @pattysgirl | Aug 21, 2022

I gave a family member suffering from long COVID symptoms. Most severe are her tremors & anxiety. She has many more if they symptoms and it had nern very debilitating for her. Looking for any help!

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