Bedbound with ME/CFS, now somewhat better using heart-rate pacing and hydration
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
Pushing past limits can be second nature to many of us with me/cfs.
In context ↗ - At worst: Severe
I went through a very dark period after thinking I had recovered, and became bedbound.
In context ↗ - Now: Somewhat better
The things that have helped are: ... Pace all activities mental and physical ... Doing this in the morning let's me plan my day in how much I can do.
Summary
Otter 10338 has ME/CFS and became bedbound after a period in which they thought they had recovered. They do not say what triggered the illness or how long they have had it. They credit pacing guided by watch and chest-strap heart-rate and HRV readings, plus hydration, earplugs and blackout curtains; low-dose THC mints relax them, and tizanidine and Benadryl help them sleep. Their latest posts describe monitoring HRV to plan activity rather than a stated level of recovery.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pace all activities mental and physical · Helped
Pace all activities mental and physical
In context ↗ - radically rest for several days · Helped
Before going to an appointment I have to radically rest for several days. It won't eliminate a crash, but it has minimized them.
In context ↗ - strict hydration and hydration packets · Helped
Being strict with hydration, love hydration packets
In context ↗ - Samsung watch, Polar H10 chest strap, Elite HRV app and daily symptom record · Helped
Using my Samsung watch to track HRV ... Keep a daily record of symptoms, make a monthly summary
In context ↗ - Noise canceling headphones, ear plugs and blackout curtains · Helped
Noise canceling head phones, and high quality ear plugs that block up to 50db. ... Blackout curtains or heavy blinds
In context ↗ - low levels of thc · Helped
Low levels of thc, 1/2 mg not exceeding 2 mg helps relax me, any more and it tends to raise my hr.
In context ↗ - Tizanidine · Helped
I'm prescribed Tizanidine for a back injury ... I mostly use it to help me sleep and lower my hr
In context ↗ - Being more aware of how I'm breathing · Helped
Being more aware of how I'm breathing.
In context ↗ - benadryl · Helped
Taking benadryl before bed helps me fall asleep
In context ↗
Approaches: POTS medication · 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, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME/CFS of unclear triggereven though it's unclear if I ever had covidIn context ↗ | Not stated | |
| — | became bedbound after a period of thinking they had recoveredI went through a very dark period after thinking I had recovered, and became bedbound.In context ↗ | Severe | |
| 2026-04-16 | pacing guided by heart-rate and HRV monitoringKeeping an eye on my hrv (heart rate variability) made me see how just watching tv or watching videos on my phone was causing my body stressIn context ↗ | Moderate | Pacing and the energy envelope |
| 2026-04-27 | using chest strap and Elite HRV app to plan the day's activityDoing this in the morning let's me plan my day in how much I can do.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- “any more and it tends to raise my hr” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Understanding that pem/crash can happen as your pushing yourself, and or happen several days later
In context ↗ - Light & noise sensitivity
When I become hyper sensitive to light or noise I need to be more aware of PEM
In context ↗ - Sleep problems
I'm prescribed Tizanidine for a back injury, but I mostly use it to help me sleep
In context ↗ - Breathlessness
Being short of breath is a sign of PEM
In context ↗
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