ME/CFS with PEM and unrefreshing sleep, still exhausted despite rest
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- Not stated
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
I fit all the diagnostic criteria for CFS.
In context ↗ - At worst: Mild
my job as a teacher is physical, excessively mentally and emotionally stimulating and I fight PEM symptoms all day
In context ↗ - Now: No benefit
here we are on day 9 of winter break and I am still exhausted ... I’ve been trying my best to be calm and relax and sleep more but it doesn’t really make a difference
In context ↗
Summary
A Reddit user who fit all the criteria for CFS described unrefreshing sleep, PEM and exhaustion. Nuvigil 150 mg helped from 2010 until they stopped it for pregnancy and mood problems. A three-year break from work left them tired but not life-alteringly so; after returning to teaching in August 2023 they hit a wall in March 2024, fighting sleep attacks and leaving work to sleep, and in December 2024 were still exhausted despite rest.
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What they tried
Also tried
Their words about each treatment
- Nuvigil · Helped
in 2010 the doctors felt bad enough for me so I started 150mg Nuvigil. Worked well
In context ↗ - CBD cream · Not said
I just manage it with CBD cream
In context ↗ - arthritis cream · Not said
other creams like arthritis cream
In context ↗ - Voltaren · Not said
other creams like arthritis cream or Voltaren
In context ↗ - PT stretches · Not said
and PT stretches
In context ↗ - rest and sleep more · No change
I've been trying my best to be calm and relax and sleep more but it doesn't really make a difference
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2010 | long-standing fatigue and sleepiness; started Nuvigil 150 mgin 2010 the doctors felt bad enough for me so I started 150mg NuvigilIn context ↗ | Not stated | |
| — | Nuvigil worked well until stopped for pregnancy and mental health issuesWorked well until I had to stop for pregnancy and later mental health issues.In context ↗ | Not stated | Modafinil / armodafinil |
| about 2020-2023 | three-year break from work; tired but not life-alteringly soI felt like I'd reached burn out and took a three year break from work. During that time I was tired, sure, but not life alteringly so.In context ↗ | Mild | |
| March 2024 | hit a brick wall at work; fighting sleep attacks, had to leave work to sleepIt was like I'd just hit a brick wall. I was fighting sleep attacks while actively teaching. I had to leave work to go home and sleep.In context ↗ | Mild | |
| December 2024 | still exhausted after nine days of winter break despite restinghere we are on day 9 of winter break and I am still exhaustedIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
no sleep has been restful and usual not even then
In context ↗ - Gut problems
despite having an awful MSLT experience due to anxiety and IBS
In context ↗ - Pain & fibromyalgia
my neck pain and headaches
In context ↗ - Anxiety & low mood
an awful MSLT experience due to anxiety and IBS
In context ↗