Housebound with ME/CFS, crashing whenever leaving the house
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 20 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
So I've ME for over 20 years
In context ↗ - At worst: Moderate
not used to being housebound
In context ↗ - Now: No benefit
I've really detoriated the last 3 years
In context ↗ - Began after: another virus
A virus was a trigger for me
Read from 2 of their posts and comments; links to the one this page draws on
Summary
The user had had ME/CFS for over 20 years, plus an autoimmune condition, and had deteriorated over the previous three years, becoming housebound and crashing whenever they left the house. Steroid injections or pulses had eased pain, shoulder movement and fatigue for up to a year after each dose, but a new rheumatologist offered physiotherapy and lifestyle changes instead. They linked worsening to viruses and to pushing past their new baseline.
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What they tried
Also tried
Their words about each treatment
- steriods · Helped
steriods have helped with pain and movement in my shoulder that has visible inflammation on scans but it has the added bonus of seeming to help with fatigue
In context ↗ - another medication · Helped
he has seen how much pain relief I get from another medication
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 chart starts 17 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| onset | became ill with ME after a virusSo I've ME for over 20 yearsIn context ↗ | Not stated |
| last 3 years | major deterioration over three years, becoming houseboundI've really detoriated the last 3 yearsIn context ↗ | Moderate |
| 2026-10-16 | housebound and crashing after leaving the house, in pain, low about itnot used to being houseboundIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
can't really exercise because of the PEM
In context ↗ - Pain & fibromyalgia
I want to not be crying in pain
In context ↗ - Anxiety & low mood
I'm starting to feel quite down about not being up to doing things out the house
In context ↗