Very bad with ME/CFS for a time, now much better and working part time
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 15 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I have a CFS diagnosis.
In context ↗ - Now: Much better
My CFS has massively improved over the last several years however.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
They were diagnosed with CFS almost 15 years earlier, when it was very bad for a time. It then improved slowly and steadily, and they now work part time, do light exercise a few times a week and walk more. Over the last two years they have had frequent illnesses with chest pain, cough and breathlessness, with the last couple leaving them in bed for a week, while skin and joint inflammation worsened; their GP calls it CFS.
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What they tried
What they credit
Also tried
Their words about each treatment
- time · Helped
over time has become much much better
In context ↗ - light exercise · Not said
I engage in light exercise a few times a week
In context ↗ - steriod cream · Helped
nothing helps it asides steriod cream which my dr and I are trying to use sparingly
In context ↗ - medication to control it · Not said
My digestive system was the worst, and I take medication to control it.
In context ↗ - antihistamines · No change
antihistamines do nothing. No matter what type I use or how much or often I take
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 first step with a time is 13 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|
| almost 15 years before January 2026 | CFS onsetI have a CFS diagnosis. I've had it for almost 15 years.In context ↗ | Not stated |
| — | period when it was very badIt was very bad for a bit but I've been very lucky and over time has become much much better.In context ↗ | Not stated |
| over the last several years | slow steady improvement in CFSI work (part time tbf), I engage in light exercise a few times a weekIn context ↗ | Mild |
| last couple of years | frequent illness episodes with chest pain, cough and breathlessness; a week stuck in bedMy last couple times have left me stuck in bed for a weekIn context ↗ | Moderate |
| January 2026 | CFS well managed and still improving, but frequent illnesses continueand is currently extremely well managed and improvingIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
flare ups being clearly the result of overdoing it
In context ↗ - Gut problems
My digestive system was the worst, and I take medication to control it.
In context ↗ - Pain & fibromyalgia
my joints get worse
In context ↗ - Heart symptoms & palpitations
I get chest pain, especially if moving about.
In context ↗ - Breathlessness
I get breathless.
In context ↗ - Flu-like symptoms
It's like a really bad cold or some kind of flu.
In context ↗ - Temperature regulation
No fever but I get shivery and my temperature goes up
In context ↗
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