Largely bound to bed with ME/CFS, felt normal again then heavy symptoms returned
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
For context, i was diagnosed with cfs when I was 16.
In context ↗ - At worst: Severe
I was insanely ill for a whole year+, barely able to walk my dog down to the lobby of my apartment. I practcially did nothing and was pretty much bound to our tiny apartment/my bed
In context ↗ - Now: Relapsed
I’ve only started to fully feel normal since January of this year ... the Real, heavy cfs (for me) has creeped in
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A 19-year-old diagnosed with CFS at 16 was struggling at school and had to quit a job. Major spinal fusion surgery in November 2023 left them insanely ill for over a year, largely bound to bed. From January 2025 they felt normal again, walking an hour a day and starting college, but a 20-hour-a-week grocery job started in April 2025 brought back heavy CFS symptoms, and they asked whether to keep working.
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What they tried
What they credit
Also tried
Their words about each treatment
- major back surgery (spinal fusion and joint replacement) · Much worse
This surgery absolutely WRECKED me and flared up all my cfs symptoms and suspected pots symptoms.
In context ↗ - walking 1 hour a day in 20 minute increments · Helped
I started building up an activity tolerance and was walking 1 hour a day in 20 minute increments.
In context ↗ - working 20 hours a week as a produce stocker · Much worse
the Real, heavy cfs (for me) has creeped in. Sleeping all day, falling asleep at my desk.
In context ↗
Approaches: Physiotherapy and rehab
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 |
|---|---|---|
| age 16 | diagnosed with CFS; struggling at school and had to quit a jobi was diagnosed with cfs when I was 16In context ↗ | Mild |
| November 2023 | major spinal fusion surgery flared all CFS symptoms; bound to bed and apartment for over a yearI was insanely ill for a whole year+, barely able to walk my dog down to the lobby of my apartment.In context ↗ | Severe |
| January 2025 | started to fully feel normal; built activity tolerance and started collegeI’ve only started to fully feel normal since January of this year. I started building up an activity tolerance and was walking 1 hour a day in 20 minute increments.In context ↗ | Near normal |
| mid April 2025 | started a 20-hour-a-week grocery produce job; body crashed and CFS symptoms crept backAt first it was extremely hard on my body. I laid in bed crying for the first 3 weeks but then I got a bit better.In context ↗ | Mild |
| 2025-06-02 | heavy CFS back while working part-time and studying: sleeping all day, constant migraines, nauseaSleeping all day, falling asleep at my desk. Legit head bobbing and then hitting my head on my desk because I simply can’t stay awake.In context ↗ | Mild |
Adverse events
- “This surgery absolutely WRECKED me and flared up all my cfs symptoms and suspected pots symptoms.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
After work I feel like I can’t do anything but lay in bed
In context ↗ - Brain fog
forgetting assignments, having a hard time concentrating, not able to read or draw
In context ↗ - POTS & dysautonomia
I also have suspected POTS though not diagnosed
In context ↗ - Sleep problems
Sleeping all day, falling asleep at my desk.
In context ↗ - Headaches & migraine
Constant migraines
In context ↗ - Gut problems
I get very bad nausea (I think due to sleep inertia?) when I wake up from naps
In context ↗
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