Bedbound with ME/CFS at first, improved then relapsed to severe
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I've been Mild and Moderate over the ten years since I developed ME/CFS.
In context ↗ - At worst: Severe
I was severe for a few months at first
In context ↗ - Now: Relapsed
one covid infection knocked me into severe real quick. Been over a year at severe.
In context ↗
Read from 58 of their posts and comments; links to the 23 this page draws on
Summary
A Reddit user who developed ME/CFS around 2014, in their mid-20s, was initially severe and bedbound for days, then moderate for a few months, then mild and working for a couple of years before settling at moderate. A February 2024 COVID infection knocked them back to severe, with no improvement for three months; ten months of aggressive rest and pacing gave a stable but still severe baseline. A move also caused a drop, and CPAP for sleep apnoea ended years of constant headaches.
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What they tried
What they credit
Also tried
Their words about each treatment
- aggressive rest and careful pacing · Helped
Took 10 months of aggressive rest and careful pacing to reach a stable baseline after covid, but still in severe territory now
In context ↗ - deep belly breathing · Helped
That helped gain more muscle endurance around my diaphragm, but it did take time.
In context ↗ - CPAP · Helped
the biggest thing that improved my sleep since developing ME/CFS was getting diagnosed with sleep apnea and getting a CPAP machine
In context ↗ - treatment for secondary adrenal insufficiency · Helped
Starting treatment made such a difference, though it took a few months to experience clear improvements.
In context ↗ - low dose beta blocker · Helped
If I'm having a bad POTS day it helps alot
In context ↗ - cutting out gluten · Helped
Cutting out gluten did help my GI stuff. It's still not great lol, but it's not nearly as awful as it was!
In context ↗ - cutting out dairy · No change
Tried cutting out dairy also but it did not make any difference whatsoever.
In context ↗ - electrolytes and hydration · Helped
Staying on top of my electrolytes and hydration does help
In context ↗ - massage therapy and percussion massage tool · Helped
the biggest help for me has been massage therapy, or if that's not accesible, using a hand held percusion massage tool at home
In context ↗ - ice and heat cycling · Helped
I find this heat/ice cycle to be helpful for my coat hanger pain
In context ↗ - melatonin · Helped
But I also still often rely on melatonin to help me get to sleep.
In context ↗ - Calm app sleep stories · Helped
Listening to sleep stories on the Calm app has helped too.
In context ↗ - Tramadol · No change
it did neither. It was awhile ago, I don't recall feeling much differently on it except maybe more groggy during the day. I didn't benefit from taking it.
In context ↗ - rollator and power wheelchair · Helped
My rollator has been a life saver in the mean time, because it allows me to sit down alot to rest when I'm out
In context ↗
Approaches: Hormones & thyroid · Pacing
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2014 | ME/CFS onset, severe and bedbound for days at a timeAt first, I was swinging towards severe, bed bound for days at a timeIn context ↗ | Severe |
| about 2016 | improved to mild for a couple of years and could workthen moderate a few months, then mild for a couple yearsIn context ↗ | Mild |
| about 2017 | back to moderatethen back to moderate (but severe when I'm in PEM)In context ↗ | Moderate |
| — | long slump after stopping an on-site jobI had a long slump (several months) when I first stopped working.In context ↗ | Moderate |
| about 2024 | slow steady improvement after a year off work; returned to a remote jobI ended up starting to do a little better towards a year out and went back to work, but with a remote jobIn context ↗ | Moderate |
| February 2024 | first COVID infection tanked the baseline into severeone covid infection knocked me into severe real quickIn context ↗ | Severe |
| 2024 | moved home and baseline plummetedI moved several months ago and my baseline plummetedIn context ↗ | Severe |
| June 2025 | stable but still severe 14 months after COVIDstill in severe territory now, 14 months after having covidIn context ↗ | Severe |
Adverse events
- Tramadol“it did neither. It was awhile ago, I don't recall feeling much differently on it except maybe more groggy during the day. I didn't benefit from taking it.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I do more than I really have the capacity for, then I have a bad PEM crash
In context ↗ - Brain fog
without as much cognitive fatigue or eye strain
In context ↗ - POTS & dysautonomia
I also have POTS and secondary adrenal insufficiency
In context ↗ - Sleep problems
the biggest thing that improved my sleep since developing ME/CFS was getting diagnosed with sleep apnea and getting a CPAP machine
In context ↗ - Pain & fibromyalgia
My legs just get so painful if I do more than that
In context ↗ - Headaches & migraine
I still get headaches and migraines sometimes, especially during a PEM crash
In context ↗ - Gut problems
Cutting out gluten did help my GI stuff. It's still not great lol
In context ↗ - Light & noise sensitivity
Artificial light is always hard though.
In context ↗ - Breathlessness
I had alot of breathing trouble my first few years
In context ↗ - Muscle weakness
I get increased weakness and PEM from lifting my arms
In context ↗ - Neuropathy & tingling
with pins and needles and a buzzing sensation through my entire body
In context ↗ - Temperature regulation
My heat intolerance got notably worse last summer
In context ↗
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