I thought I was losing my mind! Anyone else?

Posted by bookgirl930 @bookgirl930, Mar 12, 2022

I had Covid July 2020 in a coma for 9 days and 12 more mostly in ICU. Coming home I was very confused and did not understand how sick I was. Once the steroids wore off I started feeling lousy. Exhausted but next level exhaustion, brain frog, couldn’t finish sentences, nightmares, insomnia, muscle twitches, hand tremors, losing my hair, numbness and tingling in my ankle and lower back, vision changes, etc. it seems like a never ending list. My PCP wouldn’t listen, she thought I needed to increase my anxiety medication and seek treatment for PTSD. I was told to stay away from support groups and google. I finally thought I was having a stroke or heart attack and went to the ER. FINALLY someone listened and now I’m being followed by a neurologist and have several other appointments because they finally listened and “think” all of these symptoms are Post Covid effects. For 20 months I thought I was literally losing my mind. Is anyone seeing improvement this far out of initial infection?

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

Colleen Young, Connect Director | @colleenyoung | Mar 13, 2022

Welcome, @bookgirl930. You're not losing your mind and I'm glad that you are now consulting with a team who better understand post COVID.

In the Post-COVID Recovery & COVID-19 group, you'll find a variety of discussions related to your experience. Here's a list of discussions to start with. You can connect with others who have similar experiences months and years after COVID:
- Is this a COVID crash? Any suggestions on how to stop a crash? https://connect.mayoclinic.org/discussion/the-covid-crash/
- Trouble doing laundry. Anyone else struggling with simple daily tasks? https://connect.mayoclinic.org/discussion/trouble-doing-laundry-anyone/
- Do other long haulers suffer with brain changes? Seen any improvement? https://connect.mayoclinic.org/discussion/brain-changes-from-long-haulers/
- Long COVID: What helps other than rest and more rest? https://connect.mayoclinic.org/discussion/long-covid/
- Deep Breathing & Mindfulness Class: Anyone else having success? https://connect.mayoclinic.org/discussion/deep-breathing-and-mindfulness-educational-class/
- How do You Describe Your COVID Symptoms to Your Doctor? https://connect.mayoclinic.org/discussion/describing-your-symptoms/

Your body has been through a lot, not to mention the ICU experience as well as COVID recovery. Have you heard of post-intensive care syndrome or PICS? You'll find people talking about it in the ICU group here: https://connect.mayoclinic.org/group/intensive-care-icu/

Now that you and your doctors know you have long COVID, are you finding ways to cope and encourage improvement?