ME/CFS
Very severe → no benefit
Severe ME/CFS with POTS, once bedbound in a dark room, now worsening in rolling PEM
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Feb 2026
In their words
- At worst: Very severe
I've just been laying in bed in the dark unable to be on phone for like a month and even moving my limbs became an issue recently
In context ↗ - Now: No benefit
I've been stuck in rolling PEM for weeks now and my tongue has started to go numb from weakness.
In context ↗ - Says they never had: Brain fog
No brainfog
Read from 12 of their posts and comments; links to the 7 this page draws on
Summary
Lynx 31087 describes severe ME/CFS with POTS, at worst bedbound in a dark room unable to use a phone for about a month, and has not left home since mid-October. They keep trying pacing, and they think an increased LDN dose let them sit up again with a heart rate dropping back to about 77 bpm in December 2025. By February 2026 they were in rolling PEM for weeks with a tongue numb from weakness, describing the illness as worsening.
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What they tried
Their words about each treatment
- LDN · Helped
LDN relieves symptoms but now I crash without feeling like I'm doing even close to too much
In context ↗ - pacing · Not said
Pacing seems impossible for me too because basically everything gives me PEM, but I keep trying
In context ↗ - resting · Helped
resting is making me better from ME, not worse
In context ↗ - salt · Not said
Eating salt might not be a bad idea
In context ↗ - electrolytes · Not said
I abused the hell out of electrolites and my legs still ended up feeling like jelly
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| late September 2025 | got really bad, could not be on phonesgot really bad late september where we couldn't be on phonesIn context ↗ | Very severe | |
| October 2025 | improved over a few weeks to tolerate some activity againgot better over the course of a few weeks to the level where some constant activity like switching between videos, music, naps and reading felt okayIn context ↗ | Severe | |
| 2025-10-17 | emergency outing, back to barely any screentimeThen we have an emergency that required us to go outside, and now we're back to barely any screentimeIn context ↗ | Severe | |
| November-December 2025 | in bed in the dark, unable to use phone, moving limbs an issueI've just been laying in bed in the dark unable to be on phone for like a month and even moving my limbs became an issue recentlyIn context ↗ | Very severe | |
| 2025-12-19 | able to sit up with heart rate dropping back to 77 bpmI CAN FINALLY SIT UP WITHOUT GETTING MY BPM INTO THE TRIPLE DIGITSIn context ↗ | Severe | Low-dose naltrexone |
| 2026-02-03 | rolling PEM for weeks and tongue numb from weakness despite LDNI've been stuck in rolling PEM for weeks now and my tongue has started to go numb from weakness.In context ↗ | Severe |
Symptoms mentioned
Anxiety & low moodHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
Pacing seems impossible for me too because basically everything gives me PEM, but I keep trying
In context ↗ - POTS & dysautonomia
I have POTS and it has been really bad because of a crash
In context ↗ - Heart symptoms & palpitations
I CAN FINALLY SIT UP WITHOUT GETTING MY BPM INTO THE TRIPLE DIGITS
In context ↗ - Muscle weakness
my tongue has started to go numb from weakness
In context ↗ - Light & noise sensitivity
laying in bed in the dark unable to be on phone for like a month
In context ↗ - Anxiety & low mood
because of health anxiety about salt poisoning
In context ↗