Alan's ME/CFS Recovery Story
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving
- 1 year
- Published
- No date given
In their words
- Condition: ME/CFS
before i got told i had chronic fatigue syndrome
Watch the video ↗From the video’s captions - At worst: Severe
i was bed bound for quite a long time
Watch the video ↗From the video’s captions - Now: Much better
although he's not fully recovered just yet he has come so far
Watch the video ↗From the video’s captions
Summary
Alan fell ill in late 2015 and was bed-bound for months, at times crawling, before a chronic fatigue syndrome diagnosis about a year later. He credits a gradual exercise program started at one minute on a bike and logged in a notebook, though early attempts knocked him out for weeks. He now works part-time as a teaching assistant, is finishing a degree and swims, but is not fully recovered. Resting alone also made him worse.
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What they tried
What they credit
Also tried
Their words about each treatment
- anxiety medication (unnamed) · Worse
they put me on some medication um which really didn't agree with me
Watch the video ↗From the video’s captions - head manoeuvres (BPPV) · Not said
she did a lot of maneuvers on my head to see why i had balance issues
Watch the video ↗From the video’s captions - corridor walking and spinning to retrain balance · Not said
i had to walk up and down the corridor for a long time to retrain my brain
Watch the video ↗From the video’s captions - physiotherapy and occupational therapy · Not said
i got seen by a physiotherapist um they put an occupational therapist on to me straight away
Watch the video ↗From the video’s captions - Apple Watch movement reminders · Helped
she bought me an apple watch which really helped
Watch the video ↗From the video’s captions - gradual exercise programme · Helped a lot
i just started to push myself i started to do exercises indoors
Watch the video ↗From the video’s captions - Headspace app · Helped
using the app headspace as well which i think really helps me
Watch the video ↗From the video’s captions - Radical rest · Worse
that actually also got me worse
Watch the video ↗From the video’s captions
Approaches: Mind-body practices · Physiotherapy and rehab
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. 2 steps say too little to place on the scale and are only in the table. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| before Christmas 2015 | classroom started to spin; sluggish through January, then collapsed at workthe whole classroom just started to spin and this was before uh christmas of 2015Watch the video ↗From the video’s captions | Not stated | |
| 2016 | bedbound for a long time, could not wash himself or leave the house, at times crawled on the floori couldn't wash myself i couldn't um get myself out of bed i've missed all of that you know i forgot to tell you all about that but yeah i was bed bound for quite a long timeWatch the video ↗From the video’s captions | Severe | |
| after a year off work | gradual return to work, 30 minutes at a time by cab, flat out every night afterwardsi could go back for 30 minutes read with a couple of children then come homeWatch the video ↗From the video’s captions | Moderate | Graded rehab and self-made programmes |
| — | built up indoor exercise a minute at a time, logged in a book, up to ten minutesseeing three minutes in the book and then four minutes five minutes getting up to ten minutesWatch the video ↗From the video’s captions | Not stated | Graded rehab and self-made programmes |
| about five years after onset | working in a school support role, finishing his degree, back at the gym and swimming, but still limited and tirednow i do get going and i can get to work but in the early days i could not do thatWatch the video ↗From the video’s captions | Mild |
Adverse events
- “i kept hallucinating i kept thinking i could see things” Watch the video ↗From the video’s captions Mood or psychiatric effects
- Radical rest“that actually also got me worse” Watch the video ↗From the video’s captions Made symptoms worse
- “if i did a little bit of exercise um it would knock me out for two weeks or three weeks” Watch the video ↗From the video’s captions Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
i was exhausted for a good few days after that
Watch the video ↗From the video’s captions - Brain fog
sometimes i can't i just can't look at it any longer
Watch the video ↗From the video’s captions - POTS & dysautonomia
i kept complaining of dizziness
Watch the video ↗From the video’s captions - Pain & fibromyalgia
why am i getting these pains in my arms
Watch the video ↗From the video’s captions - Heart symptoms & palpitations
why am i getting these heart palpitations
Watch the video ↗From the video’s captions - Muscle weakness
i couldn't stand up
Watch the video ↗From the video’s captions - Anxiety & low mood
i think i started getting a bit anxious
Watch the video ↗From the video’s captions - Flu-like symptoms
i started to get a high temperature
Watch the video ↗From the video’s captions - Vision problems
so i was getting movements in my eyes
Watch the video ↗From the video’s captions
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