ME/CFS
Moderate → no benefit
ME/CFS from 15, mostly housebound, tried ketotifen and alpha lipoic acid
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
the ME/ADHD combo is brutal and I might've stood a chance if I'd only had one or the other
In context ↗ - At worst: Moderate
I haven't made any new friends since I've had to quit working and have become mostly housebound.
In context ↗ - Now: No benefit
My illness had been surprisingly forgiving up until that point but I deteriorated rapidly and irreversibly after that.
In context ↗
Summary
Developed ME/CFS at about age 15, with pre-existing undiagnosed ADHD and hEDS, and could barely finish coursework without being able to work. Undiagnosed POTS caused severe presyncope even while sitting, and after a farm job they deteriorated rapidly and irreversibly, later having to quit work and becoming mostly housebound. Ketotifen eased hot flashes and thermoregulation, and alpha lipoic acid and lion's mane helped one-sided nerve pain, but dryness and heat sensitivity remained.
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What they tried
Their words about each treatment
- Ketotifen · Helped
Ketotifen has helped a lot but mostly just with the hot flashes and thermoregulation isssues.
In context ↗ - Alpha lipoic acid · Helped
Alpha lipoic acid and lion's mane supplements have been very helpful with this
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 |
|---|---|---|
| around age 15 | ME/CFS began at about age 15, on top of undiagnosed ADHD and hEDSI got it (I believe) at around age 15In context ↗ | Mild |
| — | took a farm job and deteriorated rapidly and irreversibly; had to quit working and became mostly houseboundI deteriorated rapidly and irreversibly after thatIn context ↗ | Moderate |
| 2026-03-10 | still mostly housebound; dryness, heat sensitivity and nerve pain persist despite some symptom reliefI haven't made any new friends since I've had to quit working and have become mostly housebound.In context ↗ | Moderate |
Adverse events
- “I also had nerve pain on one side that started when I was having a reaction to a medication which was the start of my full-blown MCAS.” In context ↗ Nerve pain
Symptoms mentioned
Anxiety & low moodMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
my PEM symptoms manifested more as anxiety/irritability/depression/apathy
In context ↗ - POTS & dysautonomia
My undiagnosed POTS was causing severe presynchope even while sitting.
In context ↗ - Mast cell (MCAS) & allergies
which was the start of my full-blown MCAS
In context ↗ - Temperature regulation
I still react strongly to heat triggers
In context ↗ - Neuropathy & tingling
I also had nerve pain on one side
In context ↗