ME/CFS
Severe → somewhat betterIll 6.5 years before improving or writing
ME/CFS since teens: asleep all the time, later 12-14 hours and pain, somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
I’ve been living it’s cfs since I was about 16
In context ↗ - At worst: Severe
i was just asleep all the time anyways
In context ↗ - Now: Somewhat better
I am better than I was when I was first diagnosed
In context ↗
Summary
Dew 81232 has had ME/CFS since about age 16. At that time they were asleep all the time and saw no point in living; by 2022, four to five years in, they slept 12-14 hours plus a possible nap and found pain had taken over from fatigue. They did not work and were still looking for things to help and manage. By January 2024, they said they were better than at diagnosis but that learning to live with it had been hell.
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What they tried
Their words about each treatment
- avoiding things that put too much strain on my fatigue · Not said
i don’t do anything that puts too much strain on my fatigue currently
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about age 16 | CFS began; asleep all the timei was just asleep all the time anywaysIn context ↗ | Severe |
| April 2022 | no longer sleeping all the time; pain took over from fatiguei find i don’t sleep all the time now, i sleep my regular 12-14hrs and maybe have a nap in the day if i need itIn context ↗ | Moderate |
| 2024-01-25 | better than at diagnosis but still limitedI am better than I was when I was first diagnosed but learning to live with it has been hellIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
i sleep my regular 12-14hrs and maybe have a nap in the day if i need it
In context ↗ - Pain & fibromyalgia
i’m finding it’s more pain that’s taken over now rather than my fatigue
In context ↗ - Anxiety & low mood
i didn’t see a point in living because i was just asleep all the time anyways
In context ↗