ME/CFS with brain fog and PEM, somewhat better on prednisone and hydroxychloroquine
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 8.5 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
I don't have an official diagnosis yet, but I'm 98% sure it's me/cfs.
In context ↗ - At worst: Mild
I work from home, and usually when I finish working, my brain is too tired to read.
In context ↗ - Now: Somewhat better
It's been very helpful for me. It reduced the constant cognitive symptoms. I used to have brain fog and trouble finding words daily. Now, that only happens when I'm close to exhaustion.
In context ↗ - Began after: nothing they could name
I started having symptoms in 2017, and they keep getting worse.
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Plover 39790 has had worsening ME/CFS symptoms since 2017, with daily brain fog and trouble finding words, plus migraines and PEM, while working from home. Positive ANA led to a 14-day prednisone course that lessened PEM severity and to hydroxychloroquine, which after about three months reduced migraines and daily cognitive symptoms. Brain fog and word-finding trouble now come mainly near exhaustion, though PEM remains a limit.
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What they tried
What they credit
Also tried
Their words about each treatment
- calorie-restricted diet for weight loss · Not said
This is where I was in 2022. If you take anything at all from this thread, OP, I hope you will avoid PEM at all costs.
In context ↗ - Cymbalta · Not said
I have been taking Cymbalta and Wellbutrin for depression and anxiety for a couple years. My baseline anxiety was still pretty high
In context ↗ - supplements (vitamins D & B) · Helped
I had low levels of vitamins D & B, but supplements helped.
In context ↗ - Prednisone · Helped
It felt like the prednisone helped lessen the severity of PEM.
In context ↗ - Hydroxychloroquine (Plaquenil) · Helped
It's been very helpful for me. It reduced the constant cognitive symptoms.
In context ↗ - Vyvanse · Helped
she bumped me up to 60 mg. I am finding now that I don't get mentally exerted as easily
In context ↗
Approaches: Other drugs and medicines
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. The chart starts 7.4 years after onset: the story doesn’t say how ill they were before that. 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 | After |
|---|---|---|---|
| 2017 | ME/CFS symptoms began and kept worseningI started having symptoms in 2017, and they keep getting worse.In context ↗ | Not stated | |
| 2024-11-30 | working from home but too cognitively tired to read after workI work from home, and usually when I finish working, my brain is too tired to read.In context ↗ | Mild | |
| 2024-12 | two-week prednisone course lessened PEM severityIt felt like the prednisone helped lessen the severity of PEM.In context ↗ | Mild | Corticosteroid pulses |
| 2025-06-22 | after about three months on hydroxychloroquine, migraines, brain fog and word-finding improvedAfter like 3 months on the hydroxychloriquine, my migraines, brain fog, and forgetting words all improved.In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| 2025-11-19 | cognitive symptoms mostly reduced; still pacing and adapting daily tasksIt reduced the constant cognitive symptoms. I used to have brain fog and trouble finding words daily. Now, that only happens when I'm close to exhaustion.In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
Adverse events
- Lisdexamfetamine (Vyvanse, Elvanse)“even though I could concentrate better, I was pushing myself too hard cognitively. I didn't realize until the PEM hit” In context ↗ Made symptoms worse
- “Be aware that the first couple of weeks, you will be in a bad mood, and it's easy to get impatient and lose your temper.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I used to have brain fog and trouble finding words daily. Now, that only happens when I'm close to exhaustion.
In context ↗ - Headaches & migraine
my migraines, brain fog, and forgetting words all improved
In context ↗ - Post-exertional malaise
I was pushing myself too hard cognitively. I didn't realize until the PEM hit.
In context ↗ - Anxiety & low mood
My baseline anxiety was still pretty high
In context ↗
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