Sophie's SEVERE Chronic Fatigue Syndrome Recovery Story!
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving
- 2 years
- Published
- No date given
In their words
- Condition: ME/CFS
people with chronic fatigue syndrome me cfs
Watch the video ↗From the video’s captions - At worst: Severe
completely bed bound like i couldn't get out of bed
Watch the video ↗From the video’s captions - Now: Much better
i'm working part-time for my dad's ex-girlfriend kind of half a day of work became one day a week and now it's kind of up to like two or three days a week
Watch the video ↗From the video’s captions - Began after: nothing they could name
i was very much a slow build into this illness
Also read from Video on YouTube ↗.
Summary
Sophie was bedbound for almost a year after a slow onset in late 2016. Graded activity with Dr Gerald Coakley, starting with a 400 gram baked bean can, got her moving again, and later an NHS fatigue service combined it with CBT. By her later interview she was back at full-time work, not fully recovered, with some weeks of exhaustion when she overdid it. She spent about two thousand dollars a month on supplements, which did not help.
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What they tried
What they credit
Also tried
Their words about each treatment
- resting when tired (after GP advice to rest but stay active) · Much worse
the more i rested the worst they would get
Watch the video ↗From the video’s captions - supplements (about a hundred pills a day after blood tests) · No change
i was taking about a hundred pills a day
Watch the video ↗From the video’s captions - graded activity with Dr Gerald Coakley · Helped a lot
i could lift a 400 gram baked bean can off the floor
Watch the video ↗From the video’s captions - CBT at the Maudsley fatigue service, combined with graded exercise · Helped
it's a combination of graded exercise therapy and cbt combined
Watch the video ↗From the video’s captions
Approaches: CBT & mindset · Pacing
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. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| Christmas 2016 | Gradually more tired, with ever more frequent flu-like episodes while working long hours in advertisingi remember exhibiting symptoms looking back it must have been as early as the christmas of 2016.Watch the video ↗From the video’s captions | Mild | |
| summer 2017 | Could not climb the tube steps; diagnosed with post-viral fatigue and told to rest but stay activei remember walking up the tube steps of oxford street circus and i just could not make my body go up those stepsWatch the video ↗From the video’s captions | Moderate | |
| seven or eight months later | After resting more and more, became bedbound; a month in hospital; could not get downstairs or talk to peoplethe more i rested the worst they would get and it got to the point you know seven or eight months down the line and i was i was completely bed boundWatch the video ↗From the video’s captions | Severe | |
| almost a year later | Graded activity with Dr Gerald Coakley: from lifting a baked bean can and one stair to walkingi took one step down the staircase and one step back up that was itWatch the video ↗From the video’s captions | Moderate | Graded exercise therapy (GET) |
| 2020 | With the Maudsley GET and CBT programme, walking 90 minutes a day and working two or three days a weeki walk like an hour and a half a day now and i'm just like doing my shopping and like doing my houseworkWatch the video ↗From the video’s captions | Mild | Graded exercise therapy (GET) |
| early 2021 | In a good place and still progressing, though not fully recoveredi think i'm i'm in a much better place than i was five months ago and i'll continue to make progressWatch the video ↗From the video’s captions | Mild |
Adverse events
- Radical rest“the more i rested the worst they would get” Watch the video ↗From the video’s captions Made symptoms worse
- “every time i tried to push past that i'd get sick” Watch the video ↗From the video’s captions Made symptoms worse
- “i ended up in hospital for a month being looked after by nurses” Watch the video ↗From the video’s captions Hospitalisation
Symptoms mentioned
Their words about their symptoms
- Sleep problems
difficulty sleeping feeling really cold all the time
Watch the video ↗From the video’s captions - Pain & fibromyalgia
i was in huge amount of pain
Watch the video ↗From the video’s captions - Temperature regulation
feeling really cold all the time
Watch the video ↗From the video’s captions - Flu-like symptoms
i kept coming down with flu
Watch the video ↗From the video’s captions - Muscle weakness
i could hardly walk to the bathroom
Watch the video ↗From the video’s captions - Post-exertional malaise
on the days where you've drastically kind of overstepped your physical baseline where you've you've done too much
Watch the video ↗From the video’s captions - Anxiety & low mood
all of a sudden i was kind of having these sort of really really dark thoughts and like really sort of dark feelings of kind of depression and despair
Watch the video ↗From the video’s captions
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