ME/CFS
Relapsed
ME/CFS with sudden severe leg tension PEM, more rested on half screen time then relapsed
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
when I noticed PEM starting
In context ↗ - Now: Relapsed
Unfortunately I guess I relapsed, and I’m back on the double digits wagon.
In context ↗
Summary
Living with ME/CFS, they described PEM starting with sudden severe leg tension. Cutting screen time by half over a festive break left them noticeably more rested, but they relapsed to double-digit screen hours. A single 2 mg diazepam at the start of PEM eased them within an hour without drowsiness; amitriptyline once gave the best sleep of their life before an uncommon side effect.
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What they tried
Also tried
amitriptyline· Helpeddiazepam· Helpedcutting screen time in half· Helped · wore offguided mindfulness, breathing exercises and yoga nidra· Not said
Their words about each treatment
- amitriptyline · Helped
I had the most restful sleeps of my life when I was prescribed amitriptyline a few years ago. I only stopped taking it because I developed an uncommon side effect
In context ↗ - diazepam · Helped
Took 2mg last month when I noticed PEM starting ... Felt so much better in an hour, was not drowsy or ‘high’ and didn’t wake up in PEM.
In context ↗ - cutting screen time in half · Helped
I cut my screen time down by half for a couple of weeks when I had festive leave and I felt noticeably more rested
In context ↗ - guided mindfulness, breathing exercises and yoga nidra · Not said
Guided mindfulness. I use a free app called Insight Timer. ... I am new to it and like it so far.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| — | ME/CFS, onset not describedI wasn’t very well this week so my writing is iffyIn context ↗ | |
| festive leave, a couple of weeks (before March 2026) | halved screen time and felt noticeably more restedI cut my screen time down by half for a couple of weeks when I had festive leave and I felt noticeably more restedIn context ↗ | |
| by March 2026 | relapsed, back to double-digit screen hoursUnfortunately I guess I relapsed, and I’m back on the double digits wagon.In context ↗ | |
| February 2026 | 2mg diazepam at start of PEM; much better within an hourFelt so much better in an hour, was not drowsy or ‘high’ and didn’t wake up in PEM.In context ↗ | Diazepam (Valium) |
| 2026-03-28 | still unwell that week after the relapse |
Adverse events
- Amitriptyline (Elavil)“I only stopped taking it because I developed an uncommon side effect (possibly due to another medication I was on at the same time, unsure).” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when I noticed PEM starting, with sudden and severe tension in legs
In context ↗ - Sleep problems
the most restful sleeps of my life when I was prescribed amitriptyline
In context ↗ - Pain & fibromyalgia
sudden and severe tension in legs (new to me)
In context ↗