ME/CFS at 10% of normal, improved on hydrocortisone and graded exercise, later relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2016
In their words
- Condition: ME/CFS
I'm pushing 5 years with CFS now
In context ↗ - At worst: Severe
For the past few months I've been lingering at around 10% just from flubbed treatments and repeat hospital visits.
In context ↗ - Now: Relapsed
I crashed all the way back to square one after about 6 weeks. That was really rock bottom, and I haven't got much better since then.
In context ↗
Summary
Crane 22527 had CFS for about five years, reaching roughly 80% after 18 months, then crashed back to square one after returning to university; they described lingering at around 10% of normal with repeat hospital visits. In July 2015, starting hydrocortisone and graded exercise therapy, they improved to more than 20%. By September 2016 they were still pushing to improve and feeling driving could be an option. They lived in Ireland.
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What they tried
What they credit
Also tried
Their words about each treatment
- swimming · Not said
I found swimming the most challenging but the most rewarding exercise
In context ↗ - hydrocortisone · Helped
This week I started on hydrocortisone and graded exercise therapy and I feel a good improvement.
In context ↗
Approaches: Hormones & thyroid
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 18 months 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 | After |
|---|---|---|---|
| onset | CFS began, about five years before September 2016I'm pushing 5 years with CFS nowIn context ↗ | Not stated | |
| after around 18 months with it | improved to about 80% of normalI got up to about 80% after around 18 months with itIn context ↗ | Mild | |
| after about 6 weeks at university | crashed back to square one after returning to universityI crashed all the way back to square one after about 6 weeksIn context ↗ | Severe | |
| 2015-07-25 | started hydrocortisone and graded exercise therapy and felt a good improvementThis week I started on hydrocortisone and graded exercise therapy and I feel a good improvement. Pretty consistently above 20% I'd sayIn context ↗ | Severe | Hydrocortisone / cortisol |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I crashed all the way back to square one after about 6 weeks
In context ↗
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