Moderate ME/CFS with crashes and flu-like symptoms; prednisone gave no lasting benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I think I have moderate CFS
In context ↗ - At worst: Moderate
I think I have moderate CFS
In context ↗ - Now: No benefit
In the last few months I have been definitely declining but I pushed through.
In context ↗ - Began after: COVID
Since then I’ve had COVID twice and long COVID the last time.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A Reddit user described what they think is moderate CFS, with a year of afternoon crashes, flu-like symptoms, burning muscles, head pressure, weakness and unrefreshing sleep, after two COVID infections and long COVID. A prednisone trial made them feel unstoppable, but two days after stopping they felt like they were dying again. They also had a benzodiazepine withdrawal, a broken arm and a recent breakup that triggered a psychotic episode.
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What they tried
Also tried
Their words about each treatment
- Prednisone · Helped a lot
On the Prednisone I felt unstoppable
In context ↗ - Trazodone · Not said
I sleep horribly (even though I take Trazodone)
In context ↗ - working out · Not said
I wanted to get better by working out
In context ↗ - Benzodiazepines (unspecified) · Not said
I had a horrible near-death benzodiazepine withdrawal 5 years ago then went “back to normal”
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 | After |
|---|---|---|---|
| onset | long COVID after a second COVID infectionSince then I’ve had COVID twice and long COVID the last time.In context ↗ | Not stated | |
| last few months | steadily declining while pushing throughIn the last few months I have been definitely declining but I pushed through.In context ↗ | Moderate | |
| last week | prednisone trial, felt unstoppableOn the Prednisone I felt unstoppableIn context ↗ | Mild | Corticosteroid pulses |
| 2 days off prednisone | came off prednisone and felt like dying againit’s now 2 days off of it and I feel like I’m dying againIn context ↗ | Moderate |
Adverse events
- Benzodiazepines (unspecified)“I had a horrible near-death benzodiazepine withdrawal 5 years ago then went “back to normal”” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I have CFS I’ve definitely been in rolling PEM for a long time now.
In context ↗ - Flu-like symptoms
every day around 3-4 pm I crash and feel like I have the flu
In context ↗ - Temperature regulation
I feel insanely hot
In context ↗ - Headaches & migraine
have intense pressure in my head
In context ↗ - Pain & fibromyalgia
My muscles ache like crazy and feel like they’re on fire.
In context ↗ - Muscle weakness
I get so so weak I can hardly type or open my eyes.
In context ↗ - Brain fog
my mind goes blank
In context ↗ - Anxiety & low mood
I get depressed and my mind goes blank.
In context ↗ - Sleep problems
Then I sleep horribly (even though I take Trazodone)
In context ↗