ME/CFS
Moderate → no benefitIll for 2 years
ME/CFS worsening to bedbound for 10 days, still flaring despite pacing and symptom diary
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 2 years
- Last post
- Oct 2026
In their words
- At worst: Moderate
I wouldn’t say I’m housebound but I’m perhaps moderate because I don’t go out much
In context ↗ - Now: No benefit
Things just seem to be getting worse and I don’t understand why or how I should rectify this.
In context ↗ - Began after: COVID
I know the first time I got Covid it made my symptoms progressively worse and ruined my life.
Read from 68 of their posts and comments; links to the 23 this page draws on
Summary
UK woman in her forties dates her ME/CFS worsening to COVID, though she had years of fatigue and fibro pain before. She kept pushing through gym sessions and life stress and her baseline slid until one short gym session a week left her napping for days. A 10-day energy burst ended in her worst crash, bedbound for 10 days. Pacing and a symptom diary later helped her avoid PEM for weeks, though small errands still triggered flares.
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What they tried
Also tried
CBD· Helpedmeditation· Helpednutritionist-guided food and protein changes· Helpedescitalopram (Lexapro)· Helpedpacing / energy envelope· Helpedweed (smoked/vaped)· Helpediron supplements· Helpedmagnesium glycinate· Helpedcreatine· HelpedDBT workbooks· No changeCBT· No changeprivate therapy· Worsegym weight training· Worsebirth control· Worseagnus castus· Worseself-treatment for MCAS· WorseFitbit· Not saidBalance app· Not saidmirtazapine· Not saidQuercetin· Not saidrelaxing herb teas· Not saidrest / radical rest· Not saidVisible band· Not said
Their words about each treatment
- DBT workbooks · No change
I have found the DBT workbooks I’ve tried do not help me
In context ↗ - private therapy · Worse
I have tried private therapy and it has been a shit show. An expensive shit show.
In context ↗ - CBD · Helped
so things like CBD and meditation have helped me
In context ↗ - nutritionist-guided food and protein changes · Helped
So I spoke to a nutritionist who helped me with the food and protein, this helped.
In context ↗ - gym weight training · Worse
I started to get REALLY exhausted after the gym so reduced the amount I was doing and halved the frequency.
In context ↗ - escitalopram (Lexapro) · Helped
I’ve been taking half a lexapro and it seems to be the sweet spot.
In context ↗ - pacing / energy envelope · Helped
I have been keeping a diary of things I do and have been managing to avoid PEM for weeks now
In context ↗ - Fitbit · Not said
I have relied on my Fitbit so far and tbh it’s given me a bit of health anxiety.
In context ↗ - Balance app · Not said
I have some comfy sleep earbuds and a year sub to Balance
In context ↗ - weed (smoked/vaped) · Helped
I find smoking/vaping weed is better for relaxing because edibles are a different kind of high and it lasts a lot longer too.
In context ↗ - CBT · No change
I’ve been getting CBT (in the U.K.) and she’s just been teaching me about building a schedule and sticking to it. Which obviously doesn’t work.
In context ↗ - iron supplements · Helped
Taking Iron in the afternoon and Magnesium Glycinate with dinner help me wake up less through the night.
In context ↗ - creatine · Helped
I’ve been taking 3mg of creatine daily for a couple weeks now and after a few days noticed I was feeling more energised.
In context ↗ - mirtazapine · Not said
However, I was cognitively better on it, just physically in a fog.
In context ↗ - birth control · Worse
I can’t take birth control, it makes me feel awful. I’ve tried many times.
In context ↗ - agnus castus · Worse
I used to take agnus castas for my hellish PMS mood swings but now I’m 40 I had to stop it as it started giving me migraines and bad nausea.
In context ↗ - Quercetin · Not said
I started taking a while ago around the same time as creatine and felt jacked up so stopped them both but it was probably unfair to blame the Quercetin.
In context ↗ - self-treatment for MCAS · Worse
I started to try treat myself for MCAS too but ended up feeling too buzzed and didn’t sleep much for weeks.
In context ↗ - relaxing herb teas · Not said
Or I’ll have relaxing herb teas or sometimes weed.
In context ↗ - rest / radical rest · Not said
when I’m in a crash I feel WORSE when I’m trying to rest
In context ↗ - Visible band · Not said
I’ve been actively trying to figure out pacing and have got myself a visible band to help.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| summer 2024 | first COVID infection, followed by months of fatigueI had covid for the first time 2 summers ago, I had the fatigue for a good few months after but then I did start feeling a little better.In context ↗ | Mild | |
| autumn 2024 | fatigue eased, joined a gym, saw a nutritionist about food and proteinI struggled with fatigue for 3 months after covid but then it got a little better and I was enjoying weight training even if it did exhaust me.In context ↗ | Mild | |
| November 2025 | kept pushing at the gym and the baseline slid to one short session a weekA year later and I’m barely able to manage one 25 minute gym session a week using a mere 3 machines on relatively easy weights.In context ↗ | Moderate | |
| December 2025 | 10 days of energy then the worst PEM of her life, bedbound 10 daysI had this unbelievable burst of energy recently that lasted 10 days ... And then I had the worst PEM of my life for almost 3 weeks.In context ↗ | Severe | |
| January 2026 | tidying the flat and a short walk brought ankle and foot pain and PEMI wouldn’t say I’m housebound but I’m perhaps moderate because I don’t go out much and apparently when I do stuff like this happens.In context ↗ | Moderate | |
| April 2026 | diary keeping and resting avoided PEM for weeksI have been keeping a diary of things I do and have been managing to avoid PEM for weeks nowIn context ↗ | Mild | Pacing and the energy envelope |
| October 2026 | flared the same afternoon after going over her pace budget on a short errandI spent 2 days resting after I noticed a flare on my band due to a raise in resting HR ... this afternoon I’ve had an immediate flare up of symptoms.In context ↗ | Moderate |
Adverse events
- Escitalopram (Lexapro)“Taking a whole tablet seemed to make me hyperactive for the first 2 weeks and then I crashed and stayed crashed.” In context ↗ Mood or psychiatric effects
- Escitalopram (Lexapro)“tried and felt like I had flu/bad PEM for a couple weeks ... it made me feel absolutely terrible” Made symptoms worse
- Creatine“The last week has been a little bitter sweet though as I haven’t been sleeping much” In context ↗ Insomnia from treatment
- Creatine“feeling thoroughly hyperactive and wired when I’m awake” In context ↗ Side effects
- Creatine“Creatine, but also made me fart a lot.” In context ↗ Gut side effects
- Vitex (chasteberry)“I had to stop it as it started giving me migraines and bad nausea” In context ↗ Side effects
- Hormonal birth control (unspecified)“I can’t take birth control, it makes me feel awful. I’ve tried many times.” In context ↗ Side effects
- Mirtazapine (Remeron)“mirtazapine is quite sedating, even in the daytime, so I wouldn’t recommend that” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
And then I had the worst PEM of my life for almost 3 weeks.
In context ↗ - Pain & fibromyalgia
I have always had some form of fatigue/fibro when I get emotionally overwhelmed
In context ↗ - Sleep problems
I don’t remember the last time I woke up feeling refreshed either.
In context ↗ - Gut problems
I get a bunch of bloating and acid too.
In context ↗ - Breathlessness
He sees me fatigued and drained, getting out of breath, struggling to walk because my feet ache
In context ↗ - Anxiety & low mood
I have relied on my Fitbit so far and tbh it’s given me a bit of health anxiety.
In context ↗ - Light & noise sensitivity
I tend to blast the green noise to drown noise out in the evening if I’m too overstimulated
In context ↗ - POTS & dysautonomia
I was having dizzy spells and felt like I was walking through water constantly I was so fatigued.
In context ↗