ME/CFS
Severe → no benefit
Severe ME/CFS after COVID, still severe; low-dose naltrexone made things worse
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
living with me/cfs
In context ↗ - At worst: Severe
i’m currently severe
In context ↗ - Now: No benefit
i’m currently severe
In context ↗ - Began after: COVID
before getting sick after covid
In context ↗
Read from 20 of their posts and comments; links to the 10 this page draws on
Summary
A Reddit user who developed ME/CFS after COVID described being severe, in bed most of the day with PEM, tachycardia and cognitive problems. Early pregnancy brought a striking absence of crashes for the first trimester, though nausea and vomiting left her dehydrated and still largely bedbound. A second trial of low-dose naltrexone at 0.5 mg then made her feel much worse, and she was still severe in October 2026.
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What they tried
Also tried
nebivolol / metoprolol· Helpednebivolol / metoprolol· Helpedtrioral hydrating salts / hydration infusions· Helpedeye mask and noise blocking ear plugs· Helpedprescription antiemetics· Helpedgabapentin· Helpedprioritizing rest· No changelevodopa/carbidopa· WorseDXM (dextromethorphan)· Worsecromolyn· WorseLow-dose naltrexone· Worse
Their words about each treatment
- levodopa/carbidopa · Worse
i’ve gotten increase of PEM symptoms and flares after trying a lot of drugs you’d think would help me. DXM, cromolyn, even levidopa
In context ↗ - nebivolol / metoprolol · Helped
it helps me feel better by treating my tachycardia, aka, i have more energy at baseline bc my heart isn’t always running a marathon when laying down. but it doesn’t do anything directly for my cfs
In context ↗ - trioral hydrating salts / hydration infusions · Helped
beta blockers, trioral hydrating salts, eye mask and noise blocking ear plugs when sleeping or overstimulated
In context ↗ - eye mask and noise blocking ear plugs · Helped
eye mask and noise blocking ear plugs when sleeping or overstimulated
In context ↗ - prioritizing rest · No change
literally nothing different. i prioritized rest and am still sick years later. nothing id say would’ve changed the outcome
In context ↗ - prescription antiemetics · Helped
i’m on prescription antiemetics to be able to sip and eat
In context ↗ - DXM (dextromethorphan) · Worse
it definitely feels like it’s doing something in my brain i can’t describe it, almost soothing? or blunting? but i’m feeling horrible physically. very weak
In context ↗ - cromolyn · Worse
all the other drugs listed above have given me similar results, flaring PEM symptoms
In context ↗ - gabapentin · Helped
gabapentin is one of my favorite drugs of all time. it makes me feel calm, pain free and cuts out any emotional spirals immediately. sometimes helps sleep
In context ↗ - Low-dose naltrexone · Worse
unfortunately am not doing well once again at .5mgs through a different compounding pharmacy ... side effects are constant and just basically constant PEM. sore lymph, spikey feeling blood, pain etc.
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 |
|---|---|---|
| after covid | fell ill with ME/CFS after COVIDbefore getting sick after covidIn context ↗ | Not stated |
| December 2025 (12 weeks pregnant) | first trimester of pregnancy; no crashesi haven’t crashed once and pem is virtually nonexistentIn context ↗ | Severe |
| 2026-10-28 | second low-dose naltrexone trial flared PEM; still severereally fucked me up unfortunatelyIn context ↗ | Severe |
Adverse events
- “i have parkinson-like symptoms and react horribly to dopamine antagonists like compazine” In context ↗ Side effects
- Levodopa (L-DOPA)“tldr - i’ve gotten increase of PEM symptoms and flares after trying a lot of drugs you’d think would help me. DXM, cromolyn, even levidopa” In context ↗ Made symptoms worse
- Dextromethorphan (DXM)“but i’m feeling horrible physically. very weak” In context ↗ Made symptoms worse
- Cromolyn (Gastrocrom, Nalcrom)“all the other drugs listed above have given me similar results, flaring PEM symptoms and i’m currently severe” In context ↗ Made symptoms worse
- Low-dose naltrexone“unfortunately am not doing well once again at .5mgs through a different compounding pharmacy ... side effects are constant and just basically constant PEM. sore lymph, spikey feeling blood, pain etc.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
i’ve gotten increase of PEM symptoms and flares after trying a lot of drugs
In context ↗ - Brain fog
i’m desperate for this to work to help with cognitive pem
In context ↗ - POTS & dysautonomia
still disabled and spend 23 hours in bed due to pregnancy symptoms and dysautonomia
In context ↗ - Sleep problems
my circadian rhythm is extremely fucked up
In context ↗ - Pain & fibromyalgia
it makes me feel calm, pain free
In context ↗ - Light & noise sensitivity
living in the least amount of stimulation possible, meaning the least amount of light needed
In context ↗ - Muscle weakness
but i’m feeling horrible physically. very weak
In context ↗ - Gut problems
non stop nausea and vomiting for the past 5 weeks now
In context ↗ - Flu-like symptoms
side effects are constant and just basically constant PEM. sore lymph
In context ↗