ME/CFS made much worse by boom/bust, somewhat better with strict pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
it came down to fibromyalgia, cfs/me, degenerative discs disease, arthritis in my neck plus the chronic pain
In context ↗ - At worst: Moderate
Even after I stopped working I would push too hard and eventually crash, rest to recover ... I pushed myself to collapse and things got really bad over years of boom/bust
In context ↗ - Now: Somewhat better
Pacing myself to operate within my energy threshold or "envelope" as my specialist would put it, has improved my daily function dramatically.
In context ↗ - Began after: stress or burnout
I likely worked and stressed for a decade before giving in to the fatigue and pain.
- Says they never had: Gut problems
I don’t have stomach issues other than dense protein can trigger PEM.
Read from 42 of their posts and comments; links to the 28 this page draws on
Summary
Bluebell 34399, a Canadian, was ill with ME/CFS for about a decade, alongside fibromyalgia and chronic neck pain. Years of pushing through a boom/bust cycle made them much worse. Medicines such as Lyrica, Adderall and marijuana helped them cope, but they credit strict pacing within their energy envelope for dramatically improving their daily function. They still have daily pain and fatigue, and PEM with activity, and do not work.
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What they tried
Also tried
Their words about each treatment
- Cymbalta · Much worse
threw Cymbalta at me. It didn’t go well
In context ↗ - intermittent fasting (16 hours off 8 on) · Helped
was doing intermittent (16 hours off 8 on) for 6 or so months. I felt a lift of the mental fog and potentially general energy.
In context ↗ - low dose aderall · Helped
I have been taking low dose aderall (10mg) and it helps.
In context ↗ - salt · Helped
More salt certainly helped more than coffee.
In context ↗ - double plasma replacement therapy · Helped a lot
I did a double plasma replacement therapy years ago which dramatically helped.
In context ↗ - physiotherapy, jogging and daily walking · Worse
I tried running the other day... like a “I’m doing this if it kills me”. I didn’t make it far and it cost me two days of recovery.
In context ↗ - group therapy · Helped
The one I have tried and really benefit from is group therapy.
In context ↗ - mindfulness · Helped
I had practiced mindfulness for a decade before CFS/ME ... I think it has carried me a long way in terms of depression
In context ↗ - Lyrica · Helped
Personally I have success with Lyrica (only side effect I notice is trouble sleeping which is rare but gabapentin did it too) for pain.
In context ↗ - marijuana · Helped
Marijuana helps as an end all solution for me with pain.
In context ↗ - low dose naltrexone · No change
I took for 4 months with no improvement. This was at 4.5mg
In context ↗ - gabapentin · Not said
only side effect I notice is trouble sleeping which is rare but gabapentin did it too
In context ↗ - stretching and rolling · Helped
Stretching is likely my #1 for general inflammation and to an extent helped reduce my headaches from sub cranial inflammation.
In context ↗ - stopping alcohol · Not said
I stopped drinking all alcohol all together a few years ago.
In context ↗ - golfing · Helped
Previously it took three full days to recover from golfing with a cart. Now I just force myself to go
In context ↗ - sensory deprivation · Not said
I’m trying sensory deprivation which is fully out of pocket.
In context ↗ - diet (smaller portions of meat) · Helped
For me diet makes a difference overall and in real time.
In context ↗ - Cambia · Helped a lot
I think the Cambia is in 50mg packets and I use 2 at a time. It is still working great for my pain.
In context ↗ - Visible app · Not said
I use an app called Visible to do this each morning after sleep.
In context ↗ - pacing · Helped a lot
Pacing myself to operate within my energy threshold or "envelope" as my specialist would put it, has improved my daily function dramatically.
In context ↗ - rest and sleep · Helped
The only thing that gets rid of PEM is time. Time asleep is the quickest for me.
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 first step with a time is 4.3 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| around 2015 | CFS onset after a decade of stressful 50+ hour weeksI have had cfs for just about 7 yearsIn context ↗ | Not stated | |
| — | pushed through symptoms in a boom/bust cycle and collapsedI pushed myself to collapse and things got really bad over years of boom/bustIn context ↗ | Moderate | |
| 2019-10-28 | six months of 16:8 fasting lifted brain fog and energyI felt a lift of the mental fog and potentially general energy.In context ↗ | Moderate | Intermittent fasting |
| 2020-09-03 | crashed after trying to runI didn’t make it far and it cost me two days of recovery.In context ↗ | Mild | |
| 2021-09-30 | best place in a decade, golfing again with a warm-up routineI’m in the best place I have been in the past decade. Primarily medicine but other things have happened.In context ↗ | Mild | |
| 2023-05-24 | breakthrough months after dropping the boom/bust cyclethis past 6 months have been break through months for me and the main factor was 100% dumping the boom bust cycleIn context ↗ | Mild | Pacing and the energy envelope |
| 2024-01-28 | staying inside his energy envelope keeps daily function much betterhas improved my daily function dramaticallyIn context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- “Medicine really impacts my appetite as well.” In context ↗ Side effects
- “So I did for 4 years with the aid of far too much medicine ... That time seriously, in my opinion, has made life so much worse.” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“Previous Doctor was treating me for Chronic Pain Syndrome with it and my health took a serious toll.” In context ↗ Made symptoms worse
- “My pain medication actually causes insomnia for me (rare side effect)” In context ↗ Insomnia from treatment
- Pregabalin (Lyrica), Gabapentin (Neurontin)“only side effect I notice is trouble sleeping which is rare but gabapentin did it too” In context ↗ Insomnia from treatment
- Physical therapy / physiotherapy“One was 12 weeks of Physiotherapy but at basically a workers compensation return to work factory. It was hell” In context ↗ Made symptoms worse
- “I think it gave me headaches.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
There is zero point in running any meters as it always causes pem.
In context ↗ - Brain fog
I felt a lift of the mental fog and potentially general energy.
In context ↗ - Sleep problems
I have spent far too much changing beds, pillows, adjustable etc.
In context ↗ - Pain & fibromyalgia
I have Fibro and CFS.
In context ↗ - Headaches & migraine
helped reduce my headaches from sub cranial inflammation
In context ↗ - Anxiety & low mood
I’m just in bed sad af.
In context ↗ - Temperature regulation
have to really bundle up or I get these odd reactions at a skin level like the skin is on fire
In context ↗
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