ME/CFS, much of the day in bed, no improvement from stimulants or CPAP
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 3 years
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
cfs the past 3 years finally diagnosed this year
In context ↗ - At worst: Moderate
I spend a large portion of my time in bed or in bed sleeping due to the fatigue
In context ↗ - Now: No benefit
Zero change in energy. ... I'm so sick of just EXISTING, I want to live again!
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
She had ME/CFS for about three years, with insomnia for over 20 years, and by late 2024 was spending much of the day in bed or sleeping, unable to do more than read in bed. Three stimulants helped her focus but gave no change in energy, and Vyvanse caused hormonal acne and an irregular period. A sleep-apnoea CPAP trial and a circadian-rhythm reset brought no improvement, and she remained exhausted and hopeless in her latest post.
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What they tried
Also tried
Their words about each treatment
- antidepressants · Not said
I'm on antidepressants, anti anxiety meds and insomnia meds and have been the past 20+
In context ↗ - anti anxiety meds · Not said
homie you have had me on antideps and antianxiety meds for 20+ years
In context ↗ - insomnia meds · Not said
I've insomnia as is, which he knows, because he's been treating me for 10+ years for it
In context ↗ - resetting my circadian rhythm · No change
I tried the whole resetting my circadian rhythm previously ... and I told him it made no difference
In context ↗ - cpap machine · No change
I even got a cpap machine because he thought it might be due to sleep apnea (mine is mild and I've noticed no change in my quality of sleep or feeling more rested)
In context ↗ - Vyvanse · Worse
I only took 6 pills and I broke out in a massive rash of hormonal acne
In context ↗ - Adderall · No change
Adderall (even with sleep meds I could sleep)
In context ↗ - Concerta · No change
and now I'm on Concerta ... He's given me 3 different stimulants to try so far. Zero change in energy
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 2.5 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 |
|---|---|---|
| onset | ME/CFS began with continuous exhaustioncfs for the past 2.5 yearsIn context ↗ | Not stated |
| 2024-10-10 | constantly exhausted, only able to lie in bed and readeven with those I spend most of the time feeling constantly exhaustedIn context ↗ | Moderate |
| 2024-11-04 | still exhausted; stimulants only helped focusI'm so sick of just EXISTING, I want to live again!In context ↗ | Moderate |
Adverse events
- Lisdexamfetamine (Vyvanse, Elvanse)“He's had me try Vyvanse (I got terrible hormonal acne and even with my sleep meds could sleep)” In context ↗ Side effects
- Lisdexamfetamine (Vyvanse, Elvanse)“I only took 6 pills and I broke out in a massive rash of hormonal acne. (I've never had that)” In context ↗ Side effects
- Lisdexamfetamine (Vyvanse, Elvanse)“my period two months later is still irregular from it messing up my hormones” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I've insomnia as is, which he knows, because he's been treating me for 10+ years for it
In context ↗ - Post-exertional malaise
get PEM when I just "suck it up" and "push myself"
In context ↗ - Anxiety & low mood
I've clinical depression (since 15yrs old) anxiety (since 20yrs old)
In context ↗