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

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.

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.

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/

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.

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

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

Thank you for your reply. I will contact Banner.

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.

@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:

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!