Bedridden with ME/CFS, now much better after pacing and time off college
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
since ME reared its ugly head at me
In context ↗ - At worst: Severe
severe for a few months, moderate for ~3 years, mild for a year and counting...
In context ↗ - Now: Much better
I've been lucky enough to experience partial remission (from moderate to mild) and it's a whole new world.
In context ↗
Read from 19 of their posts and comments; links to the 16 this page draws on
Summary
Valley 24358's worst was in 2021, going from 40-60 hour farm work weeks to bedridden, sleeping 12-14 hours a night and only managing part school days. Severe for a few months and moderate for about three years, they improved to mild after a year off college and pacing. By late 2025 they were back at college part-time and planning an art booth, having earlier flared after walking too far. Back pain from a fall and gastroparesis limited them.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
Pacing is definitely working.
In context ↗ - year break from college · Helped
I took a year break and I've been doing better.
In context ↗ - amitriptyline · Not said
Any tips on timing for amitriptyline? I'm struggling to find the right time to give me a good bedtime and not leave me zombified too late in the day
In context ↗ - physical therapy (PT) for back · Worse
I could do the exercises on the pt twice a week, but it exhausted me for a full day
In context ↗ - new mattress with adjustable frame · Helped
The first night gave me immediate relief. I have been waking up in a lot of pain for years and I still wake up with some pain but it is so much better
In context ↗ - pregnancy pillow · Helped
I also invested in a pregnancy pillow because I'm hypermobile and it's helped out so far.
In context ↗ - forearm crutches · Helped
I used forearm crutches and only had to walk a few hundred feet which was just manageable.
In context ↗ - heavy curtains · Helped
So far the best thing I have done was getting heavy curtains. It's not perfect but it helps blocking out some of that higher frequency stuff that pierces through my sleep.
In context ↗ - moving into a college dorm · Helped
Moving out of my parents house into a dorm (college student). Food available right next to my house, elevators, buses.
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 |
|---|---|---|---|
| 2021 | onset: from intensive farm work to bedriddenI went from working 40-60 hour weeks on a farm doing intensive labor to bed ridden. I was sleeping for 12-14 hours straight every nightIn context ↗ | Severe | |
| early 2022 | moved from severe to moderatesevere for a few months, moderate for ~3 yearsIn context ↗ | Moderate | |
| 2024-11-20 | huge step up from 2021 after taking time off collegeA huge step up from 2021. I'm sleeping slightly less and able to make it through a day without nappingIn context ↗ | Moderate | Pacing and the energy envelope |
| 2025-06-18 | improved to mild after a year off collegeI keep doubting myself since I've improved to mild.In context ↗ | Mild | Pacing and the energy envelope |
| 2025-08-09 | flare without overdoing itIn a flare when I didn't even feel like I overdid it.In context ↗ | Mild | |
| 2025-10-02 | halfway through the semester without crashing from overexertionI've been lucky enough to experience partial remission (from moderate to mild) and it's a whole new world.In context ↗ | Mild |
Adverse events
- Amitriptyline (Elavil)“I'm struggling to find the right time to give me a good bedtime and not leave me zombified too late in the day” In context ↗ Side effects
- Physical therapy / physiotherapy“I could do the exercises on the pt twice a week, but it exhausted me for a full day” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still flare up if I walk too far!!
In context ↗ - Sleep problems
I still wake up a dozen times
In context ↗ - Pain & fibromyalgia
I have been waking up in a lot of pain for years
In context ↗ - Gut problems
I also have gastroparesis which may contribute to this.
In context ↗ - Headaches & migraine
Plus headaches.
In context ↗ - Anxiety & low mood
I'm feeling really down right now for no particular reason :/
In context ↗
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