ME/CFS with repeated relapses, not working by 2015 and still pain and crashes in 2021
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 17 years
- Last post
- Mar 2021
In their words
- Condition: ME/CFS
my ME diagnosis
In context ↗ - At worst: Moderate
Still not working or being a normal person but good for me.
In context ↗ - Now: Relapsed
it seemed to go away completely until I was 27. It didn't go away. Now 35 and the squatter is still here.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Cardinal 53003, in the UK, had their first ME/CFS episode at 19, with relapses at 21, 23 and 27; they were diagnosed in 2012 after post-natal depression. They were not working by 2015 and, though they felt they were doing well, a night out dancing left them non-verbal and unable to stay upright when woken after sleeping through a day and night. By 2020 they had insomnia; in 2021 they still had pain and crashes, while DBT had helped their depression.
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What they tried
What they credit
Also tried
Their words about each treatment
- DBT skills training · Helped
It was run as group sessions and, overall, it really helped.
In context ↗ - antidepressants · Not said
I have depression as well as CFS and have been on several different antidepressants and have found my teeth grinding, especially overnight, increases.
In context ↗ - mindfulness · Helped
Also mindfulness. Helps to make you more aware of how you are feeling right then.
In context ↗ - zopiclone · Helped
when it gets particularly bad or frustrating I take half a tablet ... one usually reboots my sleep. Not always though.
In context ↗ - smart watch · Not said
I was sleep tracking with a smart watch but I had a skin reaction to it so thats on hold for a while.
In context ↗ - sleep-inducing music · No change
I listened to it for over an hour before giving up.
In context ↗ - habit trackers · Helped
I've done habit trackers which did help a bit with figuring things out.
In context ↗
Approaches: CBT & mindset
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 11 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2004 (age 19) | first episode of ME/CFSMy first episode was when I was 19.In context ↗ | Not stated |
| age 21 to 27 | symptoms returned in episodes at 21, 23 and 27 and then stayedThen it cleared up, then back at 21, then 23, then it seemed to go away completely until I was 27.In context ↗ | Not stated |
| 2015-05-24 | doing well lately but still not workingSo in general I am doing really well with my CFS lately.In context ↗ | Moderate |
| 2015-05-24 | crashed after a night out dancing; slept through a day and night, non-verbalI was non verbal and not able to stay upright without helpIn context ↗ | Severe |
| 2021-03-14 | still having crashes, insomnia and painI find I tense my legs quite often without realising and that can bring on either pain, restless legs or a crash.In context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“I have depression as well as CFS and have been on several different antidepressants and have found my teeth grinding, especially overnight, increases. Dry mouth is another side effect.” In context ↗ Side effects
- Symptom-tracking apps and wearables (Visible)“I was sleep tracking with a smart watch but I had a skin reaction to it so thats on hold for a while.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I danced and knew that I was gonna regret it.
In context ↗ - Sleep problems
when I said blackout I mean I go to sleep and you can not wake me
In context ↗ - Pain & fibromyalgia
that can bring on either pain, restless legs or a crash
In context ↗ - Muscle weakness
I was non verbal and not able to stay upright without help
In context ↗ - Light & noise sensitivity
Then took me outside in the bright sunshine without my sunglasses
In context ↗ - Anxiety & low mood
I have also suffered with depression since I was about 15
In context ↗
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