ME/CFS mostly moderate, somewhat better with pacing and a narcolepsy stimulant
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 22 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I take concerta for narcolepsy/CFS based on the advice of a sleep specialist.
In context ↗ - At worst: Moderate
I'm in the moderate range for the most part because I did learn how to pace.
In context ↗ - Now: Somewhat better
I still don't have a normal life, but I have a life.
In context ↗
Read from 29 of their posts and comments; links to the 19 this page draws on
Summary
Stone 35146 fell ill with ME/CFS in their 20s, about 22 years before writing, and rates themselves mostly in the moderate range, able to hike an hour at a weekend but nothing else. Learning to pace and leaving an abusive home helped, and a stimulant for narcolepsy made a huge difference. A COVID infection and having to start work later made things harder, and pain persists.
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What they tried
What they credit
Also tried
Their words about each treatment
- Electrolytes / salt · Helped
salt makes some of the muscle pain ... I have tried coconut water, Gatorade and just plain adding more salt to my food
In context ↗ - pacing · Helped
I learned to pace and cope
In context ↗ - Pure hemp CBD · Helped
Pure hemp CBD does help some, so I can use that at least
In context ↗ - yoga · Worse
Yoga makes me feel like hell.
In context ↗ - vitamins · No change
Vitamins don't do much
In context ↗ - walking · Worse
I managed to work up to 3 miles a day for a week but wasn't able to do anything else at all those days. I quit walking and was able to do other things.
In context ↗ - electric toothbrush · Helped
Electric toothbrush. It sounds silly but it made a difference!
In context ↗ - Concerta · Helped a lot
I take concerta for narcolepsy/CFS based on the advice of a sleep specialist. It has made a huge difference in quality of life.
In context ↗ - caffeine · Helped
I'm definitely a fan of caffeine. I went caffeine free and life wasn't worth living.
In context ↗ - safe housing / moving out · Helped a lot
Once I was in safe housing it got a lot better, a lot faster
In context ↗ - depo provra · Helped
I get depo provra shots and no longer have a period.
In context ↗ - elimination diet (no nightshades, no canola) · Helped
I also can't eat nightshades, which include potatoes ... I don't have a constant stomach ache so it's worth it
In context ↗ - oxy · Helped
Oxy works really well for a short period of time. It's really not sustainable. ... it was nice but increased the brain fog
In context ↗ - Lyrics · Helped
Lyrics helped with the nerve pain.
In context ↗
Approaches: Mould avoidance · Pacing · Stimulants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. 3 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| my 20s | fell ill with ME/CFS in their 20sI've had this for 22 years and gave up on cures about 15 years ago.In context ↗ | Moderate | |
| first decade | living in an abusive home, desperate to be wellThe first decade I would have done anything to be healthy.In context ↗ | Moderate | |
| — | learned to pace and copeNot really. I learned to pace and copeIn context ↗ | Moderate | Pacing and the energy envelope |
| — | moved into safe housingOnce I was in safe housing it got a lot better, a lot fasterIn context ↗ | Moderate | |
| a decade before 2022 | stimulant for narcolepsy helped a lotI was diagnosed with narcolepsy and given a stimulant. It helped a ton. I no longer wander around in a daze.In context ↗ | Moderate | Methylphenidate (Ritalin, Concerta) |
| 2022 | COVID infection and having to start workSince having covid it's been harder. To make it worse I had to start working because of costs going up.In context ↗ | Moderate | |
| 2025-10-23 | still pacing; pain tolerable on stimulantMy pain is never fully gone but tolerable.In context ↗ | Moderate |
Adverse events
- Meditation, yoga, breathwork“Yoga makes me feel like hell.” In context ↗ Made symptoms worse
- Walking“I managed to work up to 3 miles a day for a week but wasn't able to do anything else at all those days.” In context ↗ Made symptoms worse
- Caffeine and coffee“I went caffeine free and life wasn't worth living.” In context ↗ Withdrawal problems
- Oxycodone (OxyContin, Endone)“An emergency surgery was why I ever had oxy and it was nice but increased the brain fog.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
So I can go hiking with my dogs for an hour, but that's it for the whole weekend.
In context ↗ - Brain fog
I no longer wander around in a daze.
In context ↗ - Pain & fibromyalgia
My pain is never fully gone but tolerable.
In context ↗ - Neuropathy & tingling
Lyrics helped with the nerve pain.
In context ↗ - Sleep problems
I was diagnosed with narcolepsy and given a stimulant.
In context ↗ - Light & noise sensitivity
They are sensory nightmares.
In context ↗ - Anxiety & low mood
I no longer want to kill myself every 10 minutes.
In context ↗ - Gut problems
But I don't have a constant stomach ache so it's worth it
In context ↗
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