Moderate ME/CFS, at times close to severe, now mild with pacing and working from home
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I’m mild, sometimes close to moderate, and seem to have had me/cfs for 4.5 years
In context ↗ - At worst: Moderate
I’m mild. Moderate at times, maybe considered mod/severe the first year or two.
In context ↗ - Now: Much better
It’s improved now ~5 years in (estimating mild, sometimes moderate)
In context ↗
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
Hill 72631 has had ME/CFS since about 2020, when they were moderate and at times close to severe, and only recognised it in 2024. They improved to mild over about five years; pacing and working from home now help them manage. Both pregnancies brought significant improvement. A flu shot in November 2024 seemed to give an initial lift. Propranolol for POTS helped their heart rate at first but caused months of flu-like side effects and sick leave before they stopped it.
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What they tried
What they credit
Also tried
Their words about each treatment
- covid vaccine/booster · No change
I haven’t had noticeable reactions to previous ones other than a sore arm.
In context ↗ - pacing · Helped
being able to start later ... has been huge for me in avoiding PEM and crashes
In context ↗ - flu shot · Helped
I got my flu shot two days ago and I’ve been feeling better even though my last two days included more exertion than usual
In context ↗ - power wheelchair · Helped
I got a power wheelchair this year ... mobility aids have given me a much larger range to work with
In context ↗ - handwritten symptom and activity calendar · Helped
writing down my symptoms and what I did that day helped me look back and notice some things that may have been causing PEM
In context ↗ - visible app · Helped
I do use the visible app too and it can be easier and quicker to tick off the symptoms
In context ↗ - propranolol · Much worse
it did noticeably improve my HR at first. Then a month in I started having side effects that made me think I was fighting back to back viral infections
In context ↗
Approaches: 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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020 (approx.) | ME/CFS begins, mistaken for existing PTSDI’ve likely had this illness for 4 years but only realized what it was at the start of the year because it was getting mistaken for my existing PTSDIn context ↗ | Moderate |
| a year or two in | lowest point, moderate bordering on severe some daysAt my worst a year or two in ... I was likely considering moderate bordering on severe some daysIn context ↗ | Moderate |
| before first pregnancy | went from moderate to mildafter I had already gone from moderate to mildIn context ↗ | Mild |
| — | significant improvement during both pregnanciesI had a significant improvement during both pregnancies.In context ↗ | Mild |
| 2024-11-10 | flu shot gave a bigger energy envelopeI got my flu shot two days ago and I’ve been feeling better even though my last two days included more exertion than usualIn context ↗ | Mild |
| 2025-08-02 | got a power wheelchair, able to get out of the houseI got a power wheelchair this yearIn context ↗ | Mild |
| 2025-11-23 | about five years in, mild and able to get up at 8-9amIt’s improved now ~5 years in (estimating mild, sometimes moderate).In context ↗ | Mild |
| 2026-09-20 | propranolol side effects mistaken for viral infections, short-term sick leaveBy then I already had had to go on short term sick leave because of how sick it made me feel.In context ↗ | Moderate |
| 2026-09-27 | back to usual mild baseline, working from home with accommodationsTolerated upright time varies with my severity. Lately it’s been much better ... I’m grateful to be able to work from home with accommodations | Mild |
Adverse events
- Vaccines used as treatment (BCG, staph toxoid, JE)“It gave me a sore arm too and I had muscle soreness yesterday but I think that was PEM because I had the same thing a few days before the shot too.” In context ↗ Side effects
- Propranolol (Inderal)“Then a month in I started having side effects that made me think I was fighting back to back viral infections ... I felt better shortly after stopping it and returned to my usual baseline.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
has been huge for me in avoiding PEM and crashes
In context ↗ - POTS & dysautonomia
My dysautonomia/POTS has still been very sensitive the past couple days.
In context ↗ - Sleep problems
Even if I had what I thought or felt was “enough” sleep.
In context ↗
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