ME/CFS
Moderate → relapsedIll 5 years before improving or writing
ME/CFS needing a wheelchair for outings, improved with pacing then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
When I stay within my energy envelope, my daily symptoms are less. This makes PEM stand out more.
In context ↗ - At worst: Moderate
I shower sitting. ... With my chair I get less pain and it reduces the likelihood of getting PEM.
- Now: Relapsed
The improvement lasted until I pushed too hard during a crash a month after I stopped taking the supplements.
In context ↗
Read from 32 of their posts and comments; links to the 18 this page draws on
Summary
Coast 89644 had ME/CFS for more than five years, mild at first and later bad enough to need a wheelchair for outings and two days of PEM after washing. Pacing helped most; low-dose naltrexone seemed to briefly raise their baseline but any gain was probably placebo and wore off fast, and sodium butyrate, probiotics and diet changes came with an improvement that might have been from pacing hard, which ended in a crash. Amitriptyline eased pain and sleep but caused dental problems.
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What they tried
What they credit
Also tried
creatine· Helpedacetyl-L-carnitine· Helpedanti-inflammatory painkillers (ibuprofen)· Helpedmeditation, visualising· Helpedwheelchair· HelpedVisible armband and app· Helpedincreasing salt intake· Helpeddrowsy antihistamines· HelpedLDN· Helped · wore offAmitriptyline· Helpedclimbing stairs pushing up with arms and legs together· HelpedD ribose· No changereleasing stored trauma· No changelow carb diet· Worsegentle stretching· Not saidfood supplements (powdered soups or milkshakes with extra nutrients)· Not saidHormonal birth control (unspecified)· Not said
Their words about each treatment
- pacing · Helped
The right answer is pacing. ... When I stay within my energy envelope, my daily symptoms are less.
- gentle stretching · Not said
Even with a "when the stars align" schedule, over 5 years I've noticed more flexibility.
In context ↗ - D ribose · No change
I did it like this, though it didn't help me.
In context ↗ - creatine · Helped
The right answer is pacing. But, this helps me a bit. ... - creatine
In context ↗ - acetyl-L-carnitine · Helped
But, this helps me a bit. ... - acetyl-L-carnitine
In context ↗ - low carb diet · Worse
I had much less energy than before. I got tired more easily, and PEM seemed to last longer. I felt physically weak.
In context ↗ - anti-inflammatory painkillers (ibuprofen) · Helped
I got through it with anti-inflammatory painkillers, drowsy antihistamines and resting with feet up.
In context ↗ - meditation, visualising · Helped
But, this helps me a bit. ... - meditation, visualising exactly what I can and can't do
In context ↗ - wheelchair · Helped
With my chair I get less pain and it reduces the likelihood of getting PEM.
In context ↗ - Visible armband and app · Helped
It's very helpful for pacing, and doesn't use too much energy to use. ... I use Visible to see how my body reacts to different activities on a day to day basis. This helps me plan my day.
- increasing salt intake · Helped
Increasing salt intake decreases heart rate pretty fast. ... For me it helped reduce brain fog, shaking and lightheadedness a bit, but my fatigue took ages and has not completely returned to my baseline.
In context ↗ - LDN · Helped
It seems to increase my baseline and help reduce PEM. ... any improvement was probably placebo and wore off fast
- Amitriptyline · Helped
Amitriptyline :) It mainly helps with chronic pain and getting to sleep.
In context ↗ - food supplements (powdered soups or milkshakes with extra nutrients) · Not said
I have food supplements instead. They're basically powdered soups or milkshakes with extra nutrients, quite a decent percentage of your RDA.
In context ↗ - releasing stored trauma · No change
Lots of people including me have tried that. If it helped the impact was negligible.
In context ↗ - climbing stairs pushing up with arms and legs together · Helped
I do this, it's really helped reduce my pain overall. ... My favourite way is to sit with my hands on the step above, then push up with arms and legs at the same time.
In context ↗ - sodium butyrate · Helped
I had some improvement, but I can't say if it was due to the supplements and diet or pacing really hard. ... I took sodium butyrate and probiotics containing the bacteria that produce it.
In context ↗ - probiotics containing butyrate-producing bacteria; more pre-biotic and fermented food · Helped
I had some improvement, but I can't say if it was due to the supplements and diet or pacing really hard. ... Ate more pre-biotic and fermented food, but no big diet shift.
In context ↗ - Hormonal birth control (unspecified) · Not said
periods were the worst ever right after coming off of the pill. I was still mild, but my symptoms were dramatically worse
In context ↗
Approaches: Pacing · Supplements
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS began, mild at firstI used to be mild too.In context ↗ | Mild | |
| 2024-11 | became more ill; needed a wheelchair for outingsWith my chair I get less pain and it reduces the likelihood of getting PEM.In context ↗ | Moderate | |
| 2025-05 | low-dose naltrexone raised baseline and eased PEMIt seems to increase my baseline and help reduce PEM.In context ↗ | Moderate | Low-dose naltrexone |
| 2026-02 | some improvement on sodium butyrate, probiotics and diet, or pacingI had some improvement, but I can't say if it was due to the supplements and diet or pacing really hard.In context ↗ | Moderate | |
| 2026-02 | crashed after pushing too hard; improvement endedThe improvement lasted until I pushed too hard during a crash a month after I stopped taking the supplements.In context ↗ | Moderate | |
| 2026-10-26 | naltrexone gain faded; still limitedBut any improvement was probably placebo and wore off fastIn context ↗ | Moderate |
Adverse events
- Keto and low-carb diets“I had much less energy than before. I got tired more easily, and PEM seemed to last longer. I felt physically weak. ... I think my brain fog got worse” In context ↗ Made symptoms worse
- Hormonal birth control (unspecified)“periods were the worst ever right after coming off of the pill. I was still mild, but my symptoms were dramatically worse” In context ↗ Withdrawal problems
- Salt, electrolytes and fluids“it helped reduce brain fog, shaking and lightheadedness a bit, but my fatigue took ages and has not completely returned to my baseline” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“I've had 0 tooth problems until I started it this year, but not any more ... I'm lucky I caught it early” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
every time I wash, I get a worsening of all symptoms lasting two days
In context ↗ - Brain fog
I think my brain fog got worse
In context ↗ - POTS & dysautonomia
I suspect I may have pots too.
In context ↗ - Pain & fibromyalgia
Extreme leg pain is one of the symptoms I get from walking too much.
In context ↗ - Headaches & migraine
a week of bad symptoms (around 2 days migraine, 2-3 days PEM)
In context ↗ - Gut problems
I have nausea as a worse/ new ish symptom right now
In context ↗ - Flu-like symptoms
I also get some new symptoms, like a sore throat and lack of appetite.
In context ↗ - Sleep problems
It mainly helps with chronic pain and getting to sleep.
In context ↗ - Muscle weakness
I felt physically weak.
In context ↗
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