Long Covid: Tracking my data to try to find answers & recovery

Posted by earthangel @earthangel, Jun 14, 2022

I am new to the group. I have Long Covid Syndrome for 16 months. I have tracked data about symptoms, medications, doctors, test, procedures, etc since infected.

I have been doing research everyday trying to find answers of what can be done or what I can do to reduce my symptoms and get me back to close to what I was.

I understand I may never be my whole self again due to possible damages.

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

Colleen Young, Connect Director | @colleenyoung | Jun 14, 2022

Welcome, @earthangel.
You'll notice that I moved your post with a new title to the Post-COVID Recovery & COVID-19 support group here: https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/

I did this so you can connect with others like @bentleyoakguy @ellen307 @bunzman @ldropps @liz58 @nataliem @welchllb @rinadbq @aae @luisa22 @kssunflower who are tracking their symptoms, asking questions and working together to try to find solutions for recovery.

You might also find this related discussion interesting:
- How do You Describe Your COVID Symptoms to Your Doctor? https://connect.mayoclinic.org/discussion/describing-your-symptoms/

@earthangel, what is the one piece of advice you would tell someone who is new to long COVID?

earthangel | @earthangel | Jun 14, 2022

Keep record of anything you are experiencing or feeling. BP, Oxygen, heart rate, food, drinks. You would be surprised at changes and when they start and pause.

bunzman | @bunzman | Jun 16, 2022

Are you involved in a "long covid" clinic that is sharing results and data with the CDC or other institutions (no all long covid clinics do? Are you better or worse given each symptom than you were 6 months or a year ago? Good luck, stay strongly committed to getting better while increasing function.

earthangel | @earthangel | Jun 17, 2022

We do not have a Long Covid Clinic here that is not for patient who were in intensive care with Covid.

I have symptoms that have lasted over a year and a half. Symptoms that stopped, but then returned. But I can look at medication changes and new symptoms, so I can discuss them with my doctor so he can switch or discontinue medication.

I have had some symptoms improve or not as intense with my hiatal hernia repair, and my doctor listening to my experience with lung capacity after being on oxygen in hospital and ER.

My list of symptoms is still a page and a half, but my medication list is starting to get shorter, with short time medications for new symptoms causing intense pain.