ME/CFS
Moderate → no benefit
Unable to work with ME/CFS and PEM, no better after hydrocortisone and pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Feb 2026
In their words
- At worst: Moderate
Doing almost nothing, feeling a little better, doing some house shores or something fun for myself and feeling worse again
In context ↗ - Now: No benefit
It used to help with some symptoms but now I couldn’t even float in a pool
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Swan 41751 has ME/CFS and PEM and cannot work. Hydrocortisone for low cortisol gave them more energy for a week and eased shaking hands, hair loss, loss of appetite and very low blood pressure, but their energy dropped again. They paced and rested extremely for a month and became depressed again; by February 2026 they could no longer even float in a pool.
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What they tried
Also tried
Their words about each treatment
- hydrocortisone · Helped
For me the cortisone tempered down some of the symptoms I had like shaking hands, hairless, loss of appetite and very low blood pressure. ... Energy went down again…
In context ↗ - antidepressants · Not said
I got depressed again after years of being good because of this illness. ... So I upped my antidepressants again.
In context ↗ - pacing · Not said
I have been pacing/extreme resting for a month now and I noticed that emotional or cognitive stress is worse then physical stress.
In context ↗ - extreme resting · Not said
I have been pacing/extreme resting for a month now
In context ↗ - spa · Helped
Going to the spa. It used to help with some symptoms but now I couldn’t even float in a pool
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 9 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| late 2025 | very bad two weeks doing very littleI did have a very bad 2 weeks where I didn’t do a lotIn context ↗ | Moderate | |
| January 2026 | more energy and felt a lot better in first weekI felt a lot better the first week of taking it, more energy too.In context ↗ | Moderate | Hydrocortisone / cortisol |
| January 2026 | energy dropped again after first weekBut after that first week only those symptoms above were less noticeable. Energy went down again…In context ↗ | Moderate | Hydrocortisone / cortisol |
| 2026-01-30 | depression returned during a month of pacing and extreme restI got depressed again after years of being good because of this illness.In context ↗ | Moderate | Pacing and the energy envelope |
| 2026-02-19 | too depleted even to float in a poolIt used to help with some symptoms but now I couldn’t even float in a poolIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Doing almost nothing, feeling a little better, doing some house shores or something fun for myself and feeling worse again.
In context ↗ - Anxiety & low mood
I got depressed again after years of being good because of this illness.
In context ↗ - Hair loss
symptoms I had like shaking hands, hairless, loss of appetite and very low blood pressure
In context ↗ - POTS & dysautonomia
very low blood pressure
In context ↗