Bedbound at worst with ME/CFS, much better after treating comorbidities and radical rest
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I can't know what caused my ME/CFS, but I personally suspect prolonged physiological and emotional stress contributed to my deterioration.
In context ↗ - At worst: Severe
At my worst I was essentially bedbound and couldn't even tolerate sitting upright in bed.
In context ↗ - Now: Much better
I'm not fully recovered and I'm still disabled, but I've improved substantially.
In context ↗ - Began after: stress or burnout
I personally suspect prolonged physiological and emotional stress contributed to my deterioration.
Summary
Beech 45180 was essentially bedbound at worst, unable to tolerate sitting upright, with severe PEM, air hunger, POTS and sensory intolerance. Improvement came gradually, which they attributed to treating identified comorbidities (migraine drugs, Xolair, antihistamines, cromolyn, CPAP and LDN) plus radical rest and pacing. Still disabled and using mobility aids, they now work remotely a few days a week and can see friends.
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What they tried
What they credit
Also tried
Their words about each treatment
- Meditation · Helped
even the meditation and breath work, do get me to sleep when I am not experiencing PEM
In context ↗ - Magnesium glycinate · Helped
The medications above, even the meditation and breath work, do get me to sleep when I am not experiencing PEM.
In context ↗ - Ambien · Worse
The Ambien was particularly terrifying because I was hallucinating almost all night but couldn't fall asleep.
In context ↗ - trazadone · Not said
I also have tried trazadone as kid and didn't like it.
In context ↗ - Botox · Helped a lot
Botox, Emgality and rizatriptan dramatically improved my migraines.
In context ↗ - Xolair · Helped
Xolair, antihistamines and cromolyn helped my allergy/mast-cell-type symptoms.
In context ↗ - CPAP · Helped
CPAP treated my severe sleep apnea and noticeably improved my sleep, HR and air hunger.
In context ↗ - LDN · Helped a lot
Most recently, LDN dramatically reduced the burning neuropathic pain, muscle spasms and tremors I was experiencing with activity.
In context ↗ - radical rest · Helped
Managing my POTS and getting out of rolling PEM through radical rest mattered too.
In context ↗ - pacing · Helped
take a seated shower without crashing if I pace myself
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Biologics & antibodies · Other drugs and medicines · 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 |
|---|---|---|
| — | ME/CFS onset, cause not knownI can't know what caused my ME/CFSIn context ↗ | Not stated |
| — | essentially bedbound, rolling PEMAt my worst I was essentially bedbound and couldn't even tolerate sitting upright in bed.In context ↗ | Severe |
| 2026-10-04 | gradual baseline expansion after treating comorbidities and radical restMy improvement has been very gradual and nonlinear.In context ↗ | Moderate |
Adverse events
- Zolpidem (Ambien)“The Ambien was particularly terrifying because I was hallucinating almost all night but couldn't fall asleep.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I had severe PEM
In context ↗ - Sleep problems
How do you all deal with chronic insomnia?
In context ↗ - POTS & dysautonomia
I also have a lot of comorbid conditions: POTS/autonomic dysfunction
In context ↗ - Breathlessness
I do still experience it. It's substantially less severe than it was
In context ↗ - Muscle weakness
profound muscle fatigue/heaviness
In context ↗ - Light & noise sensitivity
screen/light sensitivity
In context ↗ - Brain fog
cognitive and sensory intolerance
In context ↗ - Headaches & migraine
Botox, Emgality and rizatriptan dramatically improved my migraines
In context ↗ - Neuropathy & tingling
LDN dramatically reduced the burning neuropathic pain
In context ↗ - Vision problems
binocular vision dysfunction
In context ↗ - Anxiety & low mood
There were times I genuinely thought I would be better off dead.
In context ↗ - Mast cell (MCAS) & allergies
Xolair, antihistamines and cromolyn helped my allergy/mast-cell-type symptoms
In context ↗
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