Severe ME/CFS, now much better with restorative rest and propranolol
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- May 2025
In their words
- Condition: ME/CFS
hopping on as a now mild M.E person who was formerly severe
In context ↗ - At worst: Severe
I was moderate-severe 3-4 years ago
In context ↗ - Now: Much better
I was moderate-severe 3-4 years ago and have been mild and improving for the past 2 years. At the point where I can comfortably do 6-7000 steps a day, socialise multiple times a week and do gentle strength training at the gym once a week.
In context ↗
Summary
Formerly severe with ME/CFS, the user was moderate-severe 3-4 years before May 2025 and had full sick pay. Over the past two years they were mild and kept improving, crediting restorative rest, meditation, a Visible heart-rate band, cautious 10-20% activity increases and propranolol, with more recent therapy of uncertain benefit. By May 2025 they did 6-7000 steps a day, socialised several times a week and did gentle gym work, with no crash for over a year.
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What they tried
What they credit
Their words about each treatment
- restorative rest · Helped
I had lots of restorative rest, did body scans, visualisations, meditated loads
In context ↗ - body scans, visualisations, meditation · Helped
did body scans, visualisations, meditated loads
In context ↗ - Visible HR band and app · Helped
I invested in Visible HR band and app and haven't crashed since.
In context ↗ - graded increases in activity · Helped
this is not GET because you dont push through and drop back if you need to!
In context ↗ - propanolol · Helped
propanolol has helped me with my HR in the mornings as it spikes when I get up
In context ↗ - therapy · Helped
Ive been going to therapy to learn to sit with emotions
In context ↗
Approaches: CBT & mindset · Beta-blockers · Mind-body practices · 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 |
|---|---|---|---|
| 3-4 years before May 2025 | moderate-severe ME/CFS, off work on full sick pay, resting heavilyI was moderate-severe 3-4 years ago ... when I was most ill, I was fortunate to be able to have full sick pay | Severe | |
| around 2023 | became mild and kept improving with rest, meditation, heart-rate tracking, cautious activity increases and propranololhave been mild and improving for the past 2 yearsIn context ↗ | Mild | Pacing and the energy envelope |
| 2025-05-03 | mild and still improving; 6-7000 steps a day, socialising several times a week, gentle gym once a week, no crash in over a yearAt the point where I can comfortably do 6-7000 steps a dayIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Haven't crashed in over a year.
In context ↗ - POTS & dysautonomia
propanolol has helped me with my HR in the mornings as it spikes when I get up
In context ↗ - Anxiety & low mood
I get very anxious and it helps calm my HR and HRV down
In context ↗
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