ME/CFS
Somewhat betterIll 7 years before improving or writing
ME/CFS with breathlessness in flare-ups and daily pain, now somewhat better
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 7 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
considering it took 7 years to get diagnosed with CFS after suspecting something was wrong with me
In context ↗ - Now: Somewhat better
I’ve been making lots of progress since the summer, not as many flare ups and even being able to go to the gym once a twice a week. ... December has been particularly busy and I’ve been having more flare ups
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
A woman based in England who took seven years to be diagnosed with CFS had help tidying her room and breathlessness in flare-ups, and later developed daily pain while awaiting a fibromyalgia diagnosis. Since summer 2025 she had fewer flare-ups and was going to the gym once or twice a week. A busy December brought nausea, dizziness, headaches and swollen glands, but she kept herself from a full crash.
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What they tried
Also tried
Their words about each treatment
- yoga and box breathing exercises · Worse
I’ve also been told to do box breathing exercises which I actually really struggle with and did it at yoga on Saturday and it actually made me feel worse
In context ↗ - NHS ME clinic · Worse
The NHS ME clinic drains me, more than helps me tbh.
In context ↗ - hot water bottle · No change
I’m currently using a hot water bottle to ease the pain but it’s not working.
In context ↗
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. 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 of ME/CFS, not datedit took 7 years to get diagnosed with CFS after suspecting something was wrong with meIn context ↗ | Not stated |
| 2025 summer | fewer flare-ups, able to go to the gym once or twice a weekmaking lots of progress since the summer, not as many flare ups and even being able to go to the gym once a twice a weekIn context ↗ | Mild |
| 2025-12-25 | busy December and Christmas Eve dinner brought flare-ups; kept from a full crashI’ve been having more flare ups including, feeling nauseous, dizzy, headaches and swollen glands. Again I’ve been managing to keep myself from properly crashing.In context ↗ | Mild |
Adverse events
- Meditation, yoga, breathwork“did it at yoga on Saturday and it actually made me feel worse bc I felt so out of breath trying to do it correctly.” In context ↗ Made symptoms worse
- “The NHS ME clinic drains me, more than helps me tbh.” In context ↗ Made symptoms worse
Symptoms mentioned
BreathlessnessFlu-like symptomsGut problemsHeadaches & migrainePOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
December has been particularly busy and I’ve been having more flare ups
In context ↗ - POTS & dysautonomia
feeling nauseous, dizzy, headaches and swollen glands
In context ↗ - Pain & fibromyalgia
I am using in some sort of pain on a daily basis
In context ↗ - Headaches & migraine
woken up with a massive headache
In context ↗ - Gut problems
feeling nauseous
In context ↗ - Breathlessness
the feeling of not being able to breathe. Feels like I’ve run out of breath
In context ↗