Mild to moderate ME/CFS, somewhat better with medications and Spravato
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
the past 3 years I’ve had ME/CFS
In context ↗ - At worst: Moderate
If you took my meds away I’d go from mild/moderate to severe very easily.
In context ↗ - Now: Somewhat better
Medications have made my life sooo much more tolerable. Things still suck, but I can still do things I enjoy in life.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Ill with ME/CFS for about three years by late 2024, they called themselves mild to moderate on medication, saying they would drop to severe without it, though things still sucked and they could still do things they enjoyed. They reported that medications and Spravato made life more tolerable, and four stellate ganglion blocks each added 5-10%. They mentioned avoiding PEM and reducing eye strain and blue light to help sleep.
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What they tried
What they credit
Also tried
Their words about each treatment
- grayscale and Reduce White Point on iPhone · Helped
This has helped me both during crashes, and to prevent crashes.
In context ↗ - flu shot · No change
I felt mildly crappy the afternoon/evening of the shot, but beyond that nothing!
In context ↗ - self massage · Worse
I started a week ago and noticed I felt kinda crappy afterwards
In context ↗ - Spravato · Helped
It ended up being covered by insurance for me and is incredibly helpful
In context ↗ - SGB · Helped
I’ve had 4 SGBs now and each time I’ve gotten one they’ve added another 5-10%.
In context ↗
Approaches: Other drugs and medicines
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 3.1 years 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 | After |
|---|---|---|---|
| about 2021 (three years before December 2024) | ME/CFS beganI’ve gotten my flu shot annually for the past 3 years I’ve had ME/CFS.In context ↗ | Not stated | |
| 2025-01-15 | medications made the illness much more tolerableMedications have made my life sooo much more tolerable.In context ↗ | Moderate | |
| 2025-02-14 | Spravato covered by insurance and very helpfulIt ended up being covered by insurance for me and is incredibly helpfulIn context ↗ | Mild | |
| 2025-05-06 | four stellate ganglion blocks, each adding 5-10%I’ve had 4 SGBs now and each time I’ve gotten one they’ve added another 5-10%.In context ↗ | Mild | Stellate ganglion block |
Adverse events
- Flu vaccine“I felt mildly crappy the afternoon/evening of the shot, but beyond that nothing!” In context ↗ Side effects
- Manual lymphatic drainage“I started a week ago and noticed I felt kinda crappy afterwards” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
making sure you don’t exceed your energy envelope to avoid PEM
In context ↗ - Light & noise sensitivity
It’s definitely helped me reduce eye strain
In context ↗ - Sleep problems
helped reducing my exposure to blue light to help me sleep
In context ↗
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