Housebound with ME/CFS, now a little better after giving up work and pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
I've got ME/CFS, been diagnosed for a while now
In context ↗ - At worst: Moderate
But anytime I go over that minimal amount of activity (I'm pretty much housebound), I do crash and burn.
In context ↗ - Now: Somewhat better
I know that since giving up work and working on finding my baseline I have improved a little.
In context ↗ - Began after: COVID
I had covid end of August (after being double jabbed).
Read from 49 of their posts and comments; links to the 24 this page draws on
Summary
Valley 66128 caught COVID in August 2021 and was left with loss of smell, fatigue and brain fog; by mid-2023 they had been diagnosed with ME/CFS and had lost their job. Catching every cold put them back at square one, and by 2024 they were pretty much housebound, using a crutch and resting through crashes. They improved a little after giving up work and pacing to a baseline, though they still crash whenever they overdo it.
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What they tried
What they credit
Also tried
Their words about each treatment
- breathing exercises and relaxation techniques · Helped
breathing exercises and relaxation techniques helped this
In context ↗ - naproxen · Helped
I was put on naproxen for joint pain ... but did ease the brain fog
In context ↗ - no highly spiced or processed foods · Helped
no highly spiced or processed foods ... Lots of chicken and vegetables
In context ↗ - pacing · Helped
What has been more helpful is paring everything back and establishing a very simple routine which I can do every day
In context ↗ - eating 2 meals a day · Helped
eating 2 meals a day and making sure my morning meal is high protein definitely helps
In context ↗ - prescription tinted glasses · Helped
have got prescription tinted glasses ... which works so much better
In context ↗ - daily journal of activity · Worse
I found it a really negative experience and they agreed it wouldn't work for me.
In context ↗ - ice packs · Helped
ice packs are bliss ... I often hold an ice pack just to try and chill down
- reading children's books on a Kindle · Helped
I started by going back to reading children's books, and now adult books with short chapters
In context ↗ - codeine · Helped
I am prescribed codeine which helps take the edge off the pain.
In context ↗ - listening to 8d music · Helped
I've found listening to 8d music helps ease it slightly.
In context ↗ - cool bedroom and sleep hygiene · Helped
What works for me is a cool bedroom.
In context ↗ - fatigue management courses · No change
Neither were a great help
In context ↗ - supplements · No change
I've now stopped all supplements other than d3 and multivitamin which are doctor advised.
In context ↗ - d3 · Not said
d3 and multivitamin which are doctor advised
In context ↗ - Flu vaccine · Not said
no problems other than a sore arm for a couple of days
In context ↗
Approaches: Pacing
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 4 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| August 2021 | COVID-19, double vaccinated, quite roughI had covid end of August (after being double jabbed). Was quite rough with it.In context ↗ | Not stated | |
| December 2021 | tiredness eased, back to about 80%, still early nights and no evenings outI'd say I'm back to 80% now, I still go to bed very early, and not going out in the evenings.In context ↗ | Mild | |
| June 2023 | catching every cough and cold puts them back to square oneAlmost 2 years in and I now catch every cough and cold out there and each one puts me back at square 1.In context ↗ | Not stated | |
| August 2023 | diagnosed with ME/CFS, lost job, friends and some familyLost my job, a lot of friends and some family.In context ↗ | Moderate | |
| August 2024 | small improvement in baseline after giving up work, though still housebound and crashingI know that since giving up work and working on finding my baseline I have improved a little.In context ↗ | Moderate | Pacing and the energy envelope |
| November 2024 | still housebound, needs a crutch more and more to walkI use a crutch for walking most of the time.In context ↗ | Moderate |
Adverse events
- Symptom-tracking apps and wearables (Visible)“I found it a really negative experience ... I felt compelled to do more so I had something to write down” In context ↗ Mood or psychiatric effects
- Flu vaccine“no problems other than a sore arm for a couple of days” In context ↗ Side effects
- “No use though as I throw them all out in the night as I can't temperature regulate and they make me too hot” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Loss of smell or taste
I had covid in August, lost sense of taste and smell.
In context ↗ - Post-exertional malaise
It's very difficult not to get in to a cycle of doing too much and crashing all the time
In context ↗ - Brain fog
brain fog appears now only when I'm reaching my activity limit or getting stressed and crashing
In context ↗ - Pain & fibromyalgia
I get a lot of pain in my hands, wrists, ankles and knees all the time
In context ↗ - Sleep problems
I can sleep 12 hours straight sometimes and feel exactly the same.
In context ↗ - Light & noise sensitivity
I struggle a lot with light and sound sensitivity
In context ↗ - Tinnitus
I've had tinnitus for over 40 years, since I was a child
In context ↗ - Breathlessness
Only happens now when I do too much
In context ↗ - Temperature regulation
I suffer terribly from temperature regulation, or lack of it.
In context ↗
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