Bedbound with ME/CFS, now somewhat better, crediting low-FODMAP diet and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I am diagnosed CFS/ME
In context ↗ - At worst: Severe
got severe and bedbound
In context ↗ - Now: Somewhat better
I did recover a bit as well. I'm mostly housebound (again) and moderate.
In context ↗
Read from 12 of their posts and comments; links to the 9 this page draws on
Summary
Comet 77737 started out moderate or mildly affected, pushed through on doctors' advice and became severe and bedbound, later recovering somewhat to being mostly housebound and moderate. They credited a low-FODMAP diet and pacing, which took years, and said creatine helped their physical condition and modafinil caused fewer crashes, though none resolved their CFS symptoms. They still got PEM despite high vitamin D levels.
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What they tried
What they credit
Also tried
Their words about each treatment
- quetiapine · Not said
I am just trying it now. ... It's supposed to help sleep, but I still wake up very often during the night.
In context ↗ - mirtazapine · Not said
There is a slight hangover in the morning but, again, WAY less than mirtazapine (for me).
In context ↗ - low FODMAP diet · Helped
I do well on the low FODMAP diet.
In context ↗ - exercise · Helped
Exercise helps me. ... it greatly reduces my own visceral sensitivity for a while.
In context ↗ - methylphenidate · Worse
I am prescribed methylphenidate for my ADHD, but I often find that this treatment is at odds with my pacing needs.
In context ↗ - modafinil · Helped
I find modafinil to be slightly more forgiving, if somewhat less effective. I am doing better with it and crashing less.
In context ↗ - creatine · Helped
I take creatine along with amino acids every day, mainly to support my strength on a low meat diet. I find this very helpful for my physical condition.
In context ↗ - vitamin D · Not said
I take a rather large dose of vitamin D every day, and have for many years. ... I still get PEM with great vitamin D levels
In context ↗ - CPAP · Worse
I HATE cpap machines. They also give me lots of stress and make me unreasonably upset.
In context ↗ - oral appliance · Not said
I was able to get an oral appliance prescribed instead. This is like a retainer that goes inside your mouth and holds the jaw slightly open.
In context ↗ - beta blocker · Helped
It's definitely some amount easier to focus on reading or watching something when my heart isn't racing at 160bpm.
In context ↗ - pacing · Helped
If I have five minutes, I spend five minutes. If I have to stop in the middle of cleaning, I stop in the middle.
In context ↗
Approaches: Amino acids and carnitine · Diet · Pacing · Stimulants · 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 |
|---|---|---|
| — | started out moderate or maybe mildI started out moderate or maybe mildIn context ↗ | Moderate |
| — | pushed through on doctors' advice, became severe and bedboundpushed through at the behest of poor advice from my doctors, got severe and bedboundIn context ↗ | Severe |
| 2026-01-07 | recovered a bit, mostly housebound and moderateI did recover a bit as well. I'm mostly housebound (again) and moderate.In context ↗ | Moderate |
| 2026-02-19 | pacing chores in short stints with a chair, still chronically behindI am still chronically behind on all this too, but I am making (some) progress by allowing cleaning to be as easy as possible.In context ↗ | Moderate |
Adverse events
- Quetiapine (Seroquel)“There is a slight hangover in the morning but, again, WAY less than mirtazapine (for me).” In context ↗ Side effects
- Quetiapine (Seroquel)“The orthostatic intolerance seems bad each time I go up in dose but also levels out after a few days.” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“sometimes I feel that this motivates me to keep pushing into a crash.” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“That fake energy can take a lot out of me too!” In context ↗ Made symptoms worse
- CPAP and sleep apnoea treatment“They also give me lots of stress and make me unreasonably upset. ... When I'm in PEM I can't tolerate it” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still get PEM with great vitamin D levels and on days or weeks with little to no gastritis.
In context ↗ - Sleep problems
I still wake up very often during the night.
In context ↗ - Gut problems
I also have gastritis that comes and goes my whole life
In context ↗ - POTS & dysautonomia
The orthostatic intolerance seems bad each time I go up in dose but also levels out after a few days.
In context ↗ - Heart symptoms & palpitations
when my heart isn't racing at 160bpm
In context ↗
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