Barely able to keep working with ME/CFS, now somewhat better with pacing and sleep
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 years
- Last post
- Nov 2023
In their words
- Condition: ME/CFS
the other awful aspects of ME/CFS
In context ↗ - At worst: Moderate
I never thought I could work, at my worst, so embracing I was given a sliver of life back
In context ↗ - Now: Somewhat better
It’s allowed me to work, but that’s about it— but fortunately it’s something I love to do ... Everything outside that though, goes to rest, crashing and sleep.
In context ↗ - Began after: nothing they could name
Literally woke up around this time 3 years ago and the GI symptoms were the first to show
In context ↗
Read from 15 of their posts and comments; links to the 14 this page draws on
Summary
Dew 40259 fell ill around early 2016 with sudden gut symptoms, then other ME/CFS symptoms. By 2018 fatigue, long sleep with naps, worsening pain and headaches left them barely able to keep nursing, feeling worse than the peak of acute onset. Pacing, protecting sleep and a meat-based diet helped; pacing and sleep gave back a sliver of life, enough to work while everything else went to rest; wildfire smoke flared them in 2022.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pacing · Helped
Learned to pace, insight into the disease and sleep when it’s time to sleep. It’s allowed me to work
In context ↗ - reducing fibre · Helped
I've come to same conclusion as you and thats reducing fibre. It leaves a lot to be desired but it helps somewhat.
In context ↗ - specific diets · No change
specific diets did not work out
In context ↗ - warm compresses · Helped
The only thing I have found that even slightly helps is warm compresses
In context ↗ - ibuprofen · No change
Fact is ibuprofen and acetaminophen are doing very little at this point.
In context ↗ - a very hops based IPA · Helped
I did notice a a good effect with a very hops based IPA
In context ↗ - intermittent fasting · Worse
Prior to my onset of ME I did follow an intermittent fasting lifestyle and it worked well; now it is problematic and feel worse.
In context ↗ - LDN · Not said
I’m on the fence with it- it’s not doing harm that’s for sure, but definitely get very vivid dreams and bordering on nightmares.
In context ↗ - B.C. Women's Hospital's 'Complex Chronic Disease' program · No change
I did not find it useful at all and nothing my family GP was not already doing
In context ↗ - meat based diet · Helped
I was a vegetarian and since have become meat based, which principally was hard, but has been much better overall.
In context ↗ - heating pad · Helped
Get a heating pad, it can do wonders and something I wish I had done sooner.
In context ↗ - duloxetine · Not said
Taking LDN and duloxetine, no issues : )
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 2.2 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 |
|---|---|---|---|
| 2016 | Woke with gut symptoms first, then other ME/CFS symptoms followedLiterally woke up around this time 3 years ago and the GI symptoms were the first to showIn context ↗ | Not stated | |
| 2018-04 | Relentless fatigue, 10-11 hour sleep plus naps, cut nursing hours, felt worse than at onsetI've come to the realization I cannot, rather should not, be working and pushing myself like this.In context ↗ | Moderate | |
| 2022-09-12 | Flare from wildfire smoke: swollen lymphs, sore throat, migraines, worsened fatigueThe wildfire smoke has poured into where I live.. it’s caused a bad flare up the last few days and not letting up.In context ↗ | Mild | |
| 2023-04-10 | Switched from vegetarian to meat-based diet, felt better overallI’ve noticed an improvement with meat and how much intolerance for plant based foods I’d developed.In context ↗ | Mild | Elimination diets (other) |
| 2023-05-22 | Pacing and protecting sleep allowed them to work; everything else goes to rest and crashingLearned to pace, insight into the disease and sleep when it’s time to sleep. It’s allowed me to work, but that’s about itIn context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- Intermittent fasting“Prior to my onset of ME I did follow an intermittent fasting lifestyle and it worked well; now it is problematic and feel worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“it’s not doing harm that’s for sure, but definitely get very vivid dreams and bordering on nightmares” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
Literally woke up around this time 3 years ago and the GI symptoms were the first to show
In context ↗ - Sleep problems
My sleep pattern is about 10-11 hour blocks with 1-2 naps, usually 1-2 hours.
In context ↗ - Pain & fibromyalgia
As time has gone on, so has the pain/aching.
In context ↗ - Headaches & migraine
Headaches as well, are becoming more frequent as of late.
In context ↗ - Flu-like symptoms
My lymph’s are swollen, pain elevated, sore throat, migraines and my eyes hurt along with worsened fatigue.
In context ↗ - Vision problems
often really sore and feel almost like a burning/pressure sensation.
In context ↗ - Post-exertional malaise
Everything outside that though, goes to rest, crashing and sleep.
In context ↗
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