ME/CFS, not working, in bed for days after trips; energy app, vitamin D did nothing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- May 2025
In their words
- Condition: ME/CFS
I was diagnosed with CFS a few months ago
In context ↗ - At worst: Moderate
I haven't mentioned work for a year now as the idea of a regular commitment feels too much ... I had to spend two or three days in bed when I got back
In context ↗ - Now: No benefit
I just seem to be getting worse and have crashed pretty hard recently
In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Hill 76261 was diagnosed with CFS a few months before January 2025 and was not working. Occasional weekend trips left them in bed for two or three days, and they had dizziness and random heart rate spikes and felt they were getting worse. The Visible app, started in February 2025, helped them see how much energy activities took; a vitamin D supplement did nothing. They later crashed hard while waiting for an ME/CFS clinic appointment.
Ask Miruvor AI
What they tried
Their words about each treatment
- vitamin D supplement · No change
my vitamin D was a little low ... so she said to take a supplement. I am and it hasn't done anything!
In context ↗ - Visible · Helped
I do actually think it might be helping a bit
In context ↗ - rest / being inactive · Helped
being inactive actually does help me when I've overdone it, then the next day I can do things without being in pain
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 |
|---|---|---|---|
| 2024 | diagnosed with CFS after a few months of illnessI was diagnosed with CFS a few months ago, and haven't had any help with itIn context ↗ | Not stated | |
| 2025-02-01 | lowest point; not working, drained by small regular tasksI'm also pretty much the worst I've been at the momentIn context ↗ | Moderate | |
| 2025-03-26 | Visible app helped them see which activities cost energyI do actually think it might be helping a bitIn context ↗ | Moderate | Symptom-tracking apps and wearables (Visible) |
| 2025-05-20 | still worsening, crashed hard recently; awaiting ME/CFS clinicI just seem to be getting worse and have crashed pretty hard recentlyIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
they exhausted me and I had to spend two or three days in bed when I got back
In context ↗ - POTS & dysautonomia
had to sit down as I was really dizzy
In context ↗ - Pain & fibromyalgia
then the next day I can do things without being in pain
In context ↗ - Anxiety & low mood
brought me out of a severe depressive dip
In context ↗