ME/CFS
Severe → no benefitIll for 19 months
Housebound with ME/CFS and unable to read for minutes, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 19 months
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I'm new to cfs and have been declining since November 2023
In context ↗ - At worst: Severe
I can barely read a light magazine on the couch for several minutes without causing PEM
In context ↗ - Now: No benefit
Ultimately though nothing really moves the dial.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Eagle 75105 has been declining since November 2023. Within two weeks of starting more pacing and sick leave in early February 2024, they went from mild, working full time, to housebound and unable to read for minutes without PEM. They have POTS, hip and muscle pain and worsening leg strength. Ketamine made them anxious, a stellate ganglion block and a massage made them worse, and by June 2025 they said nothing really moved the dial.
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What they tried
Also tried
Their words about each treatment
- pacing · Worse
It's almost as if the more I rest the less I am able to do. My pacing and rest seems to be moving backwards.
In context ↗ - Garmin watch · Not said
have my Garmin watch to watch my vitals
In context ↗ - mestinon · No change
My leg strength has been going downhill quickly even with mestinon and being sedentary.
In context ↗ - compression garment · Helped
my legs do improve with compression garment
In context ↗ - massage · Worse
I had a massage and feel so much worse after.
In context ↗ - ketamine therapy · Worse
The ketamine therapy unfortunately made me a bit more anxious.
In context ↗ - stellate ganglion block · Worse
The stellate made me a bit worse tbh. Lower blood pressure, more aching.
In context ↗ - LDN · Not said
she also prescribed LDN
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 | After |
|---|---|---|---|
| November 2023 | Illness began; still working full timeI'm new to cfs and have been declining since November 2023 ... was considered mild (still with some symptoms)In context ↗ | Mild | |
| 2024-02-15 | Went on sick leave, moved in with parents, housebound; could barely read without PEMI can barely read a light magazine on the couch for several minutes without causing PEMIn context ↗ | Severe | |
| 2024-05-24 | Leg strength going downhill, hip painMy leg strength has been going downhill quickly even with mestinon and being sedentary.In context ↗ | Severe | |
| 2025-03-28 | A bit worse after a stellate ganglion blockThe stellate made me a bit worse tbh. Lower blood pressure, more aching.In context ↗ | Severe | Stellate ganglion block |
| 2025-06-28 | Still ill; nothing moves the dialUltimately though nothing really moves the dial.In context ↗ | Severe |
Adverse events
- Pacing and the energy envelope“with the pacing I've been doing in the last 2 weeks I now am able to do so much less and feel the same amount of PEM” In context ↗ Made symptoms worse
- Massage“I had a massage and feel so much worse after.” In context ↗ Made symptoms worse
- Ketamine“The ketamine therapy unfortunately made me a bit more anxious.” In context ↗ Mood or psychiatric effects
- Stellate ganglion block“The stellate made me a bit worse tbh.” In context ↗ Made symptoms worse
- Stellate ganglion block“Lower blood pressure, more aching.” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Brain fogLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I now am able to do so much less and feel the same amount of PEM
In context ↗ - Brain fog
the usual cfs symptoms (light sensitivity, brain fog, muscle pain, intense fatigue, etc)
In context ↗ - Pain & fibromyalgia
Does anyone else's hips hurt when walking
In context ↗ - POTS & dysautonomia
I also have POTS
In context ↗ - Muscle weakness
My leg strength has been going downhill quickly even with mestinon and being sedentary.
In context ↗