ME/CFS
Mild → no benefitIll for 2 years
ME/CFS with weekly PEM after COVID; no improvement with modafinil, blood pressure dropped
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Finally diagnosed with ME/CFS!
In context ↗ - At worst: Mild
I’m mild, but creeping toward moderate.
In context ↗ - Now: No benefit
I’m gradually getting worse because I keep pushing myself beyond my new limitations.
In context ↗ - Began after: COVID
long before I got COVID 2 years ago that triggered all my current symptoms
Read from 39 of their posts and comments; links to the 22 this page draws on
Summary
A US mother in her early 30s developed fatigue and brain fog after COVID in 2024, and by 2026 had PEM weekly; by September 2026 she could not drive or care for her toddler alone. She was diagnosed with mild ME/CFS after 1.5 years of specialists. Modafinil gave one day of energy, then 200 mg dropped her blood pressure to 66/49. Pacing, rest and lighter housework brought a 16-day run without PEM at the end of September 2026, though she still worked only 10 hours a week.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Synthroid · No change
I actually have Hashimoto’s but have been taking Synthroid for it for years and my hormone levels have all been in the normal range.
In context ↗ - pacing · Helped
I have some better days when I pace myself
In context ↗ - afternoon rest breaks · Helped
Taking afternoon rest breaks seems to help me more than extra hours of nighttime sleep
In context ↗ - daily logs · Helped
What really helps me is keeping details daily logs.
In context ↗ - extra sleep · Helped
After all that sleep, I felt noticeably better than usual: less brain fog, more alert, and more energetic.
In context ↗ - Modafinil · Worse
The day I increased my dose of the Modafinil, I nearly passed out because my blood pressure suddenly dropped to 66/49.
In context ↗ - Focalin XR · Worse
My sleep specialist had me try Modafinil and Focalin XR, but neither of them had any stimulating effects on me.
In context ↗ - asthma medication change · Helped
My asthma is now well controlled thanks to a medication change
In context ↗ - naltrexone · No change
I’ve been taking 4 mg of Abilify and 50 mg of naltrexone daily for years for psychiatric reasons
In context ↗ - NADH · Not said
Trying NADH and Ubiquinol supplements
In context ↗ - Remeron · Helped
I deal with broken sleep when I don’t take my psych meds, specifically Remeron.
In context ↗ - CBT · Helped a lot
CBT right after that trauma helped me cope and gave me the tools I needed to recover, plus medication, of course.
In context ↗
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 22 months 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 |
|---|---|---|---|
| mid-2024 | COVID then persistent fatigue and unrefreshing sleepIt’s been this way for me ever since I got COVID 2 years ago.In context ↗ | Not stated | |
| May 2026 | symptoms suddenly spiked, weekly PEM from overexertingMy symptoms suddenly spiked 3 or so months ago and keep getting worse because it feels like I have PEM every week from overexerting.In context ↗ | Mild | |
| 2026-08-05 | crashed the day after an evening zoo outing while already running on emptyI pushed myself to go to the local zoo for a special event last night 6-9:30 PM when I was already running on emptyIn context ↗ | Mild | |
| 2026-08-08 | palpitations, nausea and a blood pressure crash after raising Modafinil to 200 mgI got super lightheaded and dizzy and nearly passed out. My BP was 66/49.In context ↗ | Mild | Modafinil / armodafinil |
| 2026-09-04 | deteriorated while tapering two psych meds for the sleep study; could not drive or care for her toddler aloneMy symptoms have deteriorated to the point where I cannot drive safely or care for my toddler on my own.In context ↗ | Mild | |
| 2026-10-11 | pacing brought a 16-day stretch without PEMI’ve been doing pretty good myself since the 11th. I’m hoping my streak of no PEM continues and I beat my 16-day streak from last month.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-10-26 | still mild, working 10 hours a week from home and resting dailyI’m mild and can only manage 10 hours of work per week.In context ↗ | Mild |
Adverse events
- Modafinil / armodafinil“I have noticed a mild headache yesterday and today, but nothing too bad.” In context ↗ Side effects
- Modafinil / armodafinil“It gave me energy and focus the first day, so I overdid it, and crashed the following couple of days” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I noticed my heart was pounding ... I got super lightheaded and dizzy and nearly passed out. My BP was 66/49.” In context ↗ Low blood pressure or fainting
- Dexmethylphenidate (Focalin)“I was still dead tired all the time except with a high resting HR, hot flashes, elevated BP, extra sweating, jitteriness, and sometimes lightheadedness.” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I still get excessive daytime sleepiness and PEM.
In context ↗ - Brain fog
still wake up feeling fatigued and sleepy with lots of brain fog
In context ↗ - Sleep problems
I could sleep 9-10 hours (like I did last night) and still feel dead tired the next day.
In context ↗ - Flu-like symptoms
feel like I could sleep for half a day with flu-like body pains
In context ↗ - Pain & fibromyalgia
Intense fatigue, my whole body aches
In context ↗ - Muscle weakness
a heaviness in my neck and limbs
In context ↗ - Light & noise sensitivity
a poisoned feeling, and stimuli sensitivity all sound very familiar as PEM symptoms
In context ↗ - Headaches & migraine
I have noticed a mild headache yesterday and today
In context ↗ - Heart symptoms & palpitations
I noticed my heart was pounding. I checked my resting HR and it was 100 BPM.
In context ↗ - POTS & dysautonomia
I got super lightheaded and dizzy and nearly passed out.
In context ↗ - Tinnitus
I got ringing in my ears
In context ↗ - Neuropathy & tingling
my hands and feet got tingly and sweaty
In context ↗ - Gut problems
Then some nausea hit
In context ↗