ME/CFS
Mild → no benefitIll for 10 years
ME/CFS for ten years, struggling to work 18 hours a week, no improvement from treatments
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 10 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I have ME/CFS and currently trying modafinil to combat exhaustion.
In context ↗ - At worst: Mild
I'm struggling to work 18 hours a week. I don't get to spend time with my partner because I'm either asleep or at work.
In context ↗ - Now: No benefit
I have been treated for ME/CFS for 5+ years now with no significant improvement.
In context ↗
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
Harbor 20022, 30, has had ME/CFS for at least ten years and struggled to work 18 hours a week while sleeping 14 to 16 hours a night. Modafinil gave a brief lift in mood but lost effect and brought forgetfulness; CoQ10 did nothing, a month of CPAP did not help, and five years of trying medications and supplements brought little progress. A Mother's Day cave tour triggered a crash followed by persistent evening headaches.
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What they tried
Also tried
hybernation day· Helped · wore offCPAP· No changesupplements, diet, sleep routine· No changeCoQ10· No changeelectrolyte drinks· No changemodafinil· Worsehydroxyzine· Not saidLexapro· Not saidbuproprion· Not said
Their words about each treatment
- CPAP · No change
I tried the CPAP for a month, it didnt help at all, I returned it and moved on to other options.
In context ↗ - supplements, diet, sleep routine · No change
I should be healthy af with all the supplements, diet, sleep routine etc. But nothing works.
In context ↗ - CoQ10 · No change
I tried CoQ10 with no success :(
In context ↗ - modafinil · Worse
I started with 200mg, but then didn't sleep for 3 days. Reduced to 100mg and added nightly hydroxyzine.
In context ↗ - hydroxyzine · Not said
Reduced to 100mg and added nightly hydroxyzine.
In context ↗ - Lexapro · Not said
I am also on Lexapro and buproprion, and hydroxyzine to help me sleep.
In context ↗ - electrolyte drinks · No change
So I do have a sodium deficiency, and have been drinking electrolyte drinks for ages. Increased them but no headache change :/
In context ↗ - hybernation day · Helped
For a day or two after this, no headaches! ... But then they came back and have persisted.
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 8.2 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 |
|---|---|---|---|
| 2015 | ME/CFS began, no definite cause foundI'm 30, had CFS at least the past 10 years, been thru all the diagnostics with no definite answerIn context ↗ | Not stated | |
| September 2023 | struggling to work 18 hours a week, sleeping 14+ hours, missing family timeI'm struggling to work 18 hours a week. I don't get to spend time with my partner because I'm either asleep or at work.In context ↗ | Mild | |
| September 2024 | modafinil gave a brief lift in mood and irritability before losing effectIt seemed to work at first! I still slept a lot but with modafinil, I felt happier and less irritatable.In context ↗ | Mild | Modafinil / armodafinil |
| May 2025 | crashed after a Mother's Day cave tour, then daily evening headachesCrashed that night tho of course, not surprising. However, almost every day since then I've gotten a headache when it starts to near bedtime.In context ↗ | Mild | |
| 2025-05-31 | still working with rest days, 16-hour nights and occasional hibernation daysI need one every couple months or so, where I wake up for one meal (10-30 mins usually) and that's my "day"In context ↗ | Mild |
Adverse events
- Modafinil / armodafinil“I started with 200mg, but then didn't sleep for 3 days.” In context ↗ Insomnia from treatment
- Modafinil / armodafinil“I still feel like I'm losing my mind. I've had to throw so much food away because I left it out on the counter instead of putting it back in th fridge. ... Information just leaves my brain.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
During flare ups, I cannot come to work or leave my bed until I have sufficiently rested, usually 1-3 days.
In context ↗ - Sleep problems
I'm sleeping 14+ hours a night without feeling rested.
In context ↗ - Headaches & migraine
almost every day since then I've gotten a headache when it starts to near bedtime
In context ↗ - Gut problems
Not enough sleep and I get a gnarly tummy ache.
In context ↗ - Brain fog
Information just leaves my brain.
In context ↗