ME/CFS
Mild → relapsedIll 33 years before improving or writing
Mild ME/CFS for 30 years, much better for about a year, then worse after surgery
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 33 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I’ve had mild ME for 30+yrs
In context ↗ - At worst: Mild
I’ve had mild ME for 30+yrs and manage to work part time
In context ↗ - Now: Relapsed
I think my CFS symptoms were much better for about a year after the birth ... I’ve had mild ME for 30+yrs
Summary
She has had symptoms since age 7 and mild ME for over 30 years, and managed part-time work, often feeling guilty about time off. In pregnancy her symptoms went wild for the first few weeks, then she had an energetic pregnancy, a water birth and CFS symptoms much better for about a year. The toddler years in Covid lockdown were hardest. An infected armpit cyst, antibiotics and minor surgery in 2025 left her feeling run over, faint and sad from PEM.
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What they tried
Also tried
Their words about each treatment
- hypnobirthing tape · Helped
I used a hypnobirthing tape to focus and calm my mind which I found really helpful.
In context ↗ - antibiotics · Worse
I was fine to work at first but then the antibiotic side effects kicked in and I felt rotten.
In context ↗ - surgery · Worse
I had the surgery yesterday under local anaesthetic. In the grand scheme of surgery it was a minor procedure. However, I feel like I’ve been run over.
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 |
|---|---|---|
| age 7 | ME symptoms began in childhoodI‘ve had symptoms since age 7In context ↗ | Mild |
| first weeks of pregnancy (2017) | symptoms went wild in early pregnancy; could not sit upMy symptoms went wild during the first few weeks of pregnancy ... I couldn’t sit up and the only food I could eat was grapefruit.In context ↗ | Severe |
| after the first 6 weeks of pregnancy | energy returned for the rest of the pregnancyHowever, after the first 6 weeks I had a really great pregnancy. I had more energy and sailed through.In context ↗ | Mild |
| August 2018, after the birth | CFS symptoms much better for about a year after the birthI think my CFS symptoms were much better for about a year after the birth.In context ↗ | Near normal |
| 2020, toddler phase in Covid lockdown | hardest period; most of the day-to-day care fell to her in lockdownby that point we were in Covid lockdown so 90% of the day to day activities fell to meIn context ↗ | Mild |
| 2025-10-01 | PEM after an infected cyst, antibiotics and minor surgeryI’ve had mild ME for 30+yrs and manage to work part time ... I feel like I’ve been run over.In context ↗ | Mild |
Adverse events
- Antibiotics (unspecified)“then the antibiotic side effects kicked in and I felt rotten” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“I feel like I’ve been run over” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
as any illness or appointment causes PEM
In context ↗ - Temperature regulation
My symptoms are way worse in the winter
In context ↗ - POTS & dysautonomia
I felt faint changing the dressing this morning.
In context ↗ - Anxiety & low mood
I just feel so tired and sad.
In context ↗