Housebound with long COVID, now nearly back to normal after a rehab program
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Jul 2024
In their words
- Condition: Long COVID
I got it the first time two years, and I got POTS, Long Covid and MCAS from it.
In context ↗ - At worst: Moderate
I went from housebound and hopeless to getting ready to head to college in the fall.
In context ↗ - Now: Near normal
Not recovery as in remission, but I did recover my life back.
In context ↗ - Began after: COVID
got covid and subsequent POTS at 15
In context ↗
Summary
She was 15 when COVID in 2022 left her with POTS, long COVID and MCAS, and she became housebound. A Mayo pediatric pain rehabilitation program of daily PT, OT, biofeedback, psychology and recreation therapy helped her get from housebound to preparing for college. She described a slight remission from her POTS rather than full recovery, and caught COVID again in July 2024, though her fever settled quickly.
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What they tried
What they credit
Also tried
Their words about each treatment
- Mayo’s pediatric pain rehab program · Helped a lot
went to Mayo’s pediatric pain rehab program ... I went from housebound and hopeless to getting ready to head to college in the fall
In context ↗ - PT · Helped
pt got me reconditioned
In context ↗ - OT (occupational therapy) · Helped
their ots helped us learn to schedule our days ... moderation and modification were HUGE for me
In context ↗ - biofeedback · Helped
it helps with chronic pain mostly, although i’ve found the breathing helpful during pre syncope too
In context ↗ - psychology classes · Not said
8 hours a day of PT, OT, biofeedback, psychology classes, and rec therapy
In context ↗ - rec therapy · Not said
rec therapy = recreation therapy! teaching us balance :)
In context ↗
Approaches: Pacing · 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. The chart starts 20 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022 | COVID infection at age 15; developed POTS, long COVID and MCASgot covid and subsequent POTS at 15In context ↗ | Not stated |
| early 2024 | housebound and hopeless before the Mayo pediatric pain rehab programI went from housebound and hopelessIn context ↗ | Moderate |
| June 2024 | completed Mayo pediatric pain rehab program (daily PT, OT, biofeedback, psychology, recreation therapy); preparing for collegeI did recover my life back ... I went from housebound and hopeless to getting ready to head to college in the fallIn context ↗ | Mild |
| July 2024 | caught COVID again just before starting college; fever came down quickly, POTS only in slight remissionI've been in a slight remission from my POTSIn context ↗ | Near normal |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
got covid and subsequent POTS at 15
In context ↗ - Mast cell (MCAS) & allergies
I got POTS, Long Covid and MCAS from it
In context ↗ - Post-exertional malaise
having predictable energy outputs helps me keep from flaring up
In context ↗
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