Moderate to severe ME/CFS with ADHD, pacing extremely hard
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
Have ADHD and moderate/severe CFS due to lupus.
In context ↗ - At worst: Moderate
moderate/severe CFS due to lupus
In context ↗ - Now: No benefit
Have ADHD and moderate/severe CFS due to lupus. The stimulant medication makes it extremely hard to pace.
In context ↗
Summary
Otter 64072 describes moderate to severe CFS attributed to lupus, and also reports fibromyalgia, for which a fibro medication and gentle physical therapy helped increase their quality of life by a good bit. They have ADHD and take stimulant medication at most about three days a week, which they say makes pacing extremely hard because they blow past their limits. A wedge pillow once gave them their worst sleep, with choking nightmares, until they stopped using it.
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What they tried
Also tried
Their words about each treatment
- wedge pillow · Worse
I once used a wedge pillow for a couple weeks and got the worst sleep of my life
In context ↗ - one of the fibro meds · Helped
I’ve been on one of the fibro meds and did PT for it and both helped increase my quality of life by a good bit
In context ↗ - stimulant medication · Worse
The stimulant medication makes it extremely hard to pace. I’ll get on a focus train and just blow right past my limits.
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. 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 attributed to lupusmoderate/severe CFS due to lupusIn context ↗ | Not stated |
| — | fibro medication and gentle PT improved quality of lifeI’ve been on one of the fibro meds and did PT for it and both helped increase my quality of life by a good bitIn context ↗ | Moderate |
| 2024-12-22 | still moderate/severe CFS; stimulants only 3 days a weekI take them maybe 3 days a week max.In context ↗ | Moderate |
Adverse events
- Wedge pillow“I once used a wedge pillow for a couple weeks and got the worst sleep of my life” In context ↗ Insomnia from treatment
- Stimulants (unspecified)“The stimulant medication makes it extremely hard to pace. I’ll get on a focus train and just blow right past my limits.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I’ve been on one of the fibro meds and did PT for it
In context ↗