Long COVID with PEM and heavy fatigue, improved with easy walks then relapsed
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 22 months
- Last post
- Jun 2022
In their words
- Condition: Long COVID
I believe I have had long covid since getting sick (along with other family members) end of March 2020.
In context ↗ - At worst: Moderate
most days I have to choose between grocery shopping and taking a shower, actual exercise has been off the table for a long time.
In context ↗ - Now: Relapsed
I get a few days of better or maybe even almost a week and then I slip back.
In context ↗ - Began after: COVID
I believe I have had long covid since getting sick (along with other family members) end of March 2020.
In context ↗
Summary
Long COVID from March 2020 left them with post-exertional malaise and heavy fatigue that forced them to cut back on work. After nearly two years they began improving in January 2022 with gradual easy walks, but a cold their son had in April 2022 triggered a relapse. By June 2022 they were still struggling with PEM, managing only a couple of light electric-bike rides; a third vaccine dose caused maybe one or two days of feeling tired and sick but did not seem to worsen their long haul.
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What they tried
What they credit
Also tried
Their words about each treatment
- very gradually increase movement (easy walks) · Helped
I was progressing with very gradually increase movement (easy walks more consistently) without triggering fatigue
In context ↗ - 3rd vaccine · No change
My 3rd vaccine went ok, maybe 1-2 days of feeling tired and sick
In context ↗
Approaches: Physiotherapy and rehab
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| March 2020 | long COVID after family COVID infectionI believe I have had long covid since getting sick (along with other family members) end of March 2020.In context ↗ | Mild |
| 2020-2021 | PEM and fatigue limited daily tasksmost days I have to choose between grocery shopping and taking a showerIn context ↗ | Moderate |
| January 2022 | gradual easy walks without triggering fatigueI started to feel improvement in January 2022 (almost two years in)In context ↗ | Mild |
| early April 2022 | relapse after a cold caught from their sonwhatever I recently caught has triggered a relapse and I'm devastated about thisIn context ↗ | Moderate |
| June 2022 | coming out of a several-week downturn; two short electric-bike ridesI'm currently just coming out of a several week down turn, thankfully, and have taken two light bike rides on an electric assist bikeIn context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“My 3rd vaccine went ok, maybe 1-2 days of feeling tired and sick (what else is new 😂) but I don't think it made long haul things worse overall.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My most persistent symptom was/is PEM and heavy fatigue.
In context ↗ - Brain fog
heavy foggy head
In context ↗ - Gut problems
digestion issues
In context ↗ - Flu-like symptoms
scratchy throat
In context ↗
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