Housebound and mostly in bed with ME/CFS, somewhat better; pacing eased brain fog
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
I finally realized I've probably got ME/CFS and/or Long-Covid.
In context ↗ - At worst: Severe
since 6 weeks I'm on the moderate end of severe, housebound, mostly in bed, currently in a crash.
In context ↗ - Now: Somewhat better
I feel less brain fogged, and the muscle soreness doesn't build up so much.
In context ↗ - Began after: COVID
probably Long COVID after infection 2.23 on top of probably preexisting CFS/ME
Read from 22 of their posts and comments; links to the 8 this page draws on
Summary
Alpine 42536, 50, in Germany dated her illness to a COVID infection in February 2023, suspecting Long COVID on top of years of mild-to-moderate ME/CFS. In mid-2024 her baseline worsened after physiotherapy for a slipped disc, leaving her severely ill, housebound and mostly in bed. Pacing in 30-second activity and rest bursts eased brain fog and muscle soreness; by late September she was getting healing rest but remained largely bedbound.
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What they tried
What they credit
Also tried
Their words about each treatment
- 30/ 30 pacing · Helped
The good news is, it helps. I feel less brain fogged, and the muscle soreness doesn't build up so much.
In context ↗ - physiotherapy · Worse
Epiphany after my baseline worsened due to physiotherapy necessary for slipped disk.
In context ↗ - Mindful Self Compassion · Helped
Mindful Self Compassion (see Kristen Neff and Christopher Germer) and Buddhist self compassion practices ... have helped me better process and be with my emotions
In context ↗ - heart coherence breathing exercise (Breathball app) · Helped
The heart coherence breathing exercise as guided in the Breathball app helps me downregulate my nervous system, when I remember it.
In context ↗ - herbal medicines · Not said
I tried herbal medecines to calm down, too, bc I couldn't afford the energy drain of being panicked ... Idk if they really helped, I think they interfered with my sleep.
In context ↗ - committed rest · Helped
I got some ear defenders that allow me to do committed rest (I don't like calling it aggressive rest), which felt safe and surprisingly refreshing.
In context ↗
Approaches: Pacing · Radical rest
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 |
|---|---|---|---|
| February 2023 | Long COVID after a COVID infection, on top of years of probable mild-to-moderate ME/CFSprobably Long COVID after infection 2.23 on top of probably preexisting CFS/ME (hindsight and all that).In context ↗ | Moderate | |
| mid-2024 | baseline worsened after physiotherapy needed for a slipped diskEpiphany after my baseline worsened due to physiotherapy necessary for slipped disk.In context ↗ | Moderate | |
| July 2024 | severe crash, housebound and mostly in bedsince 6 weeks I'm on the moderate end of severe, housebound, mostly in bed, currently in a crash.In context ↗ | Severe | |
| 2024-09-25 | figuring out her crash baseline and getting healing rest with pacingI feel like I've about figured out my crash baseline and am getting not only repairing rest, but also some healing rest.In context ↗ | Severe | Pacing and the energy envelope |
Adverse events
- Physical therapy / physiotherapy“Epiphany after my baseline worsened due to physiotherapy necessary for slipped disk.” In context ↗ Made symptoms worse
- Herbal remedies (unspecified)“I tried herbal medecines to calm down, too ... I think they interfered with my sleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Brain fog
I feel less brain fogged
In context ↗ - Pain & fibromyalgia
starting to have pain in the big muscle groups while active
In context ↗ - Neuropathy & tingling
slight pins and needles sensation in arms
In context ↗ - Tinnitus
tinnitus getting louder or more intense/cutting
In context ↗ - Gut problems
tension up to pain in stomach or whole belly
In context ↗ - Temperature regulation
Cold sensations deep in tissue in arms
In context ↗
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