ME/CFS
Severe → no benefitIll for 9.5 years
Unable to sit up for days with ME/CFS, still ill after sleepiness drugs
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 9.5 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
Even after a real diagnoses I still struggle to believe this is even real.
In context ↗ - At worst: Severe
I'm stuck in bed, I can't sit I can't get myself to make food and I in pain.
In context ↗ - Now: No benefit
I realize I'm not good. I'm definitely sick, not all in my head. ... I have a lot to do but I'm stuck in bed
In context ↗
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
They described constant tiredness, hypersomnia and post-exertional malaise that could leave them unable to sit up for days; sleep studies found nothing. Six medications for sleepiness, including modafinil and Madopar, failed or caused side effects. After moving country in 2023 they were stuck in bed in pain, and in 2025 something they tried made them three times sleepier. They paced themselves and remained ill.
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What they tried
Also tried
modafinil· No changeMadopar· No changeXyrem· No changeanti depressants· Worsedex/ritalin· Worsedex/ritalin· Worseprotein and multivitamin· Much worsepacing· Not said
Their words about each treatment
- anti depressants · Worse
Also tried anti depressants like you and it just made it worse honestly. It was also really hard to quit giving me massive headaches and dizziness.
In context ↗ - dex/ritalin · Worse
taking it when I was 21 for a short period but it changed my behavior and I lost all my creativity, not to mention the side effects I had
In context ↗ - modafinil · No change
The first one I tried was indeed modafinil which did zero for me
In context ↗ - Madopar · No change
I recently stopped taking Madopar as it also does nothing for me either.
In context ↗ - Xyrem · No change
I have this issue currently with Xyrem except it's not showing any good effects either.. so frustrating.
In context ↗ - protein and multivitamin · Much worse
I recently tried this and it destoyed me tiredness wise. Why is it making me 3x more sleepy when I take this stuff?
In context ↗ - pacing · Not said
Paced myself strongly for a while ... Pace yourself guys, don't overdo it.
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. 1 step says too little to place on the scale and is only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2016 (approx.) | became ill with constant tiredness and post-exertional malaiseStill no solution after 2 years of going to the doctor and hospital it seems never endingIn context ↗ | Moderate |
| 2023-11-16 | crashed after moving countryI have a lot to do but I'm stuck in bed, I can't sit I can't get myself to make food and I in pain.In context ↗ | Severe |
| 2025-08-15 | still ill, focusing on himselfI focus on myself and that's been helping me a *ton* with feelings with frustrations.In context ↗ | Not stated |
Adverse events
- Antidepressants (unspecified)“Also tried anti depressants like you and it just made it worse honestly.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“It was also really hard to quit giving me massive headaches and dizziness.” In context ↗ Withdrawal problems
- Dexamfetamine (Dexedrine), Methylphenidate (Ritalin, Concerta)“taking it when I was 21 for a short period but it changed my behavior and I lost all my creativity, not to mention the side effects I had.” In context ↗ Mood or psychiatric effects
- “the 6 I've tried so far have failed and either given me zero effects or only bad side effects” In context ↗ Side effects
- “I recently tried this and it destoyed me tiredness wise. Why is it making me 3x more sleepy when I take this stuff?” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I absolutely experience (sometimes extreme) post-exertional malaise to the point of being unable to even sit up at all
In context ↗ - Sleep problems
I'm still extremely tired no matter how much or little I sleep
In context ↗ - Pain & fibromyalgia
Everything hurts, it's terrible.
In context ↗ - POTS & dysautonomia
it feels like my blood stagnated and I get sickness feelings/dizzyness fairly quickly
In context ↗ - Anxiety & low mood
I'm scared again of overdoing things when I think I'm okay.
In context ↗