Bedridden with long COVID, now much better after steroids and a muscle relaxer
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2022
In their words
- Condition: Long COVID
I went from relatively healthy to extremely sick with many of the symptoms of LC.
In context ↗ - At worst: Severe
I will potentially lose my career because I’m bedridden.
In context ↗ - Now: Much better
I’ve improved 50% because a doctor was willing to actually scale treatment (safely) to my degree of functionality when other doctors wouldn’t.
In context ↗ - Began after: another virus
I have a post viral disease from a virus I got in 2015 while living in the tropics.
Summary
Stream 99562 became extremely sick in 2015 after a virus caught in the tropics, eventually bedridden, with brain fog, dysautonomia and chronic migraine. It took nearly five years and more than ten specialists before anyone suggested it was post-viral, and care cost 50k plus. A three-month low-dose steroid course plus a muscle relaxer left them 50% improved, able to exercise more and long term on fewer medications.
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What they tried
What they credit
Also tried
Their words about each treatment
- unnamed medication (4 mg at night) · Worse
it does make me super tired and dizzy once I wake up. I take 4mg at night.
In context ↗ - vestibular therapy · Not said
including vestibular and physical therapy
In context ↗ - salt pills · Helped
dysautonomia and all it took to fix it was salt pills
In context ↗ - low dose steroids · Helped a lot
I trialed a course of low dose steroids for status migrainous
In context ↗ - centrally acting muscle relaxer · Helped
paired with a centrally acting muscle relaxer at a higher dose
In context ↗ - exercise · Helped
allowed me to increase capacity through exercise
In context ↗
Approaches: Other drugs and medicines · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2015 | post-viral illness after a virus caught in the tropicsI went from relatively healthy to extremely sick with many of the symptoms of LC.In context ↗ | Severe | |
| 2022 | bedridden and at risk of losing their careerI will potentially lose my career because I’m bedridden.In context ↗ | Severe | |
| 2022 | 50% improvement on a three-month low-dose steroid course with a muscle relaxerI’ve improved 50% because a doctor was willing to actually scale treatment (safely) to my degree of functionality when other doctors wouldn’t.In context ↗ | Moderate | Corticosteroid pulses |
| 2022-06-04 | more functional and on fewer medicationsLong term, I’m taking less meds and more functional.In context ↗ | Moderate |
Adverse events
- “it does make me super tired and dizzy once I wake up.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
that’s far too much work with brain fog
In context ↗ - POTS & dysautonomia
My crazy HR in the ER suddenly wasn’t anxiety but dysautonomia and all it took to fix it was salt pills.
In context ↗ - Heart symptoms & palpitations
My crazy HR in the ER suddenly wasn’t anxiety but dysautonomia
In context ↗ - Headaches & migraine
lifelong treatment for chronic migraine
In context ↗
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