Long COVID
Severe → much betterIll 18 months before improving or writing
Largely bedridden with long COVID for six months, now about 80% better
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Oct 2024
In their words
- Condition: Long COVID
I ended up with long Covid in April 2023.
In context ↗ - At worst: Severe
the 6 months of basically being bedridden that I went through
In context ↗ - Now: Much better
I’m about 80% better than I was while going through long Covid while also being on prednisone or going through prednisone withdrawals.
In context ↗ - Began after: COVID
I ended up with long Covid in April 2023.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user who got long COVID in April 2023 spent about six months largely bedridden, with heart rate above 110, high blood pressure, insomnia and panic attacks. Prednisone and CellCept, given for an autoimmune condition, worsened their long COVID; prednisone caused anxiety, mania and severe muscle weakness, and they tapered off it by July 2023. They later became homeless with four children; by October 2024 they felt about 80% better than during long COVID plus prednisone/withdrawal.
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What they tried
Also tried
Their words about each treatment
- prednisone · Much worse
It made my long Covid symptoms worst.
In context ↗ - cellcept · Not said
I was put on immunosuppressants unbeknownst to me (prednisone and cellcept), during my initial hospitalization.
In context ↗ - Xanax · Not said
anxiety that had them giving me Xanax in the hospital.
In context ↗ - radically resting · Helped
I do believe my rest helped it not become something even worst than the 6 months of basically being bedridden that I went through.
In context ↗ - supplements · Helped
I think some supplements helped but I can’t afford them anymore.
In context ↗
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 |
|---|---|---|
| April 2023 | first COVID-19 infection in hospital, followed by long COVIDI ended up with long Covid in April 2023.In context ↗ | Severe |
| 2023 | about six months largely bedridden; too weak to walk or get in and out of a baththe 6 months of basically being bedridden that I went throughIn context ↗ | Severe |
| October 2023 | slowly improving, still unable to play games or watch TVI haven’t been able to for 5 months. But I feel like I’m slowly improving.In context ↗ | Severe |
| January 2024 | back to daily symptoms, possibly after a virusI was doing so well and now back to daily symptoms.In context ↗ | Moderate |
| October 2024 | about 80% better than during prednisone and long COVIDI’m about 80% better than I was while going through long Covid while also being on prednisone or going through prednisone withdrawals.In context ↗ | Mild |
Adverse events
- Corticosteroid pulses, Mycophenolate (CellCept)“Part of the reason my case was so severe, is because I was put on immunosuppressants unbeknownst to me (prednisone and cellcept), during my initial hospitalization.” In context ↗ Made symptoms worse
- Corticosteroid pulses“prednisone destroyed my mind ... Prednisone cause anxiety, mania, psychosis and depression.” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“It made my long Covid symptoms worst. ... Being on it was worst than my initial condition and worst than long Covid.” In context ↗ Made symptoms worse
- Corticosteroid pulses“At one point my muscles were so weak that I couldn’t walk or get in and out of a tub.” In context ↗ Side effects
- Corticosteroid pulses“the withdrawals are very rough too. Joint pain, extreme fatigue, rashes, blurred vision, and more.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaSleep problemsVision problems
Their words about their symptoms
- Heart symptoms & palpitations
a heart rate that wouldn’t drop below 110
In context ↗ - POTS & dysautonomia
very high blood pressure
In context ↗ - Anxiety & low mood
panic attacks, and anxiety
In context ↗ - Muscle weakness
At one point my muscles were so weak that I couldn’t walk or get in and out of a tub.
In context ↗ - Brain fog
prednisone destroyed my mind
In context ↗