Two years of declining ability, hours stuck in bed, medications didn't help
- Condition
- Condition not stated
- At worst
- Severe (mostly bedbound)
- Ill for
- 2 years
- Last post
- Jan 2026
In their words
- Condition: Condition not stated
I'm not diagnosed
In context ↗ - At worst: Severe
Showering is difficult even with a shower chair, I can't do basic chores, sometimes I can't even get up to go to the bathroom and have to wait.
In context ↗ - Now: No benefit
For the last couple years I have watched as I've been able to do less and less.
In context ↗ - Began after: nothing they could name
For the last couple years I have watched as I've been able to do less and less.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A young, undiagnosed Reddit user described two years of steadily declining ability. Days began with five to ten hours stuck in bed, with naps, difficulty showering and chores, and worst days when they could not move or open their eyes. Medications tried for other suspected conditions had not helped and sometimes made things worse. They said they were still deteriorating and were unsure whether this was ME/CFS.
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What they tried
Also tried
Their words about each treatment
- medication · Worse
taking medication, only for it to not help a single thing and a lot of times make it worse
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. The chart starts 2 years 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 |
|---|---|---|
| about two years before January 2026 | began being able to do less and lessFor the last couple years I have watched as I've been able to do less and less.In context ↗ | Not stated |
| January 2026 | worst days in bed unable to move or open eyesI'm stuck in bed for at the minimum ten hours, and there will be periods during that time where I am completely incapable of moving or even keeping my eyes open.In context ↗ | Severe |
| 2026-01-20 | usual days in bed 5-10 hours, needs naps, deterioratingfor the first 5 to usually 10 hours of my day (sometimes more), I am stuck in my bed.In context ↗ | Severe |
Adverse events
- “I've gone through so many conditions, taking medication, only for it to not help a single thing and a lot of times make it worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
I don't even remember things that just happened a few hours or days ago
In context ↗ - POTS & dysautonomia
not being able to walk around without stumbling around like a fawn
In context ↗ - Sleep problems
I also have to have a scheduled 30 minute- hour long nap somewhere in the day, sometimes multiple times a day.
In context ↗ - Pain & fibromyalgia
I'm able to get on my computer and write or draw a bit before stopping because it hurts too much
In context ↗ - Muscle weakness
sometimes I can't even get up to go to the bathroom and have to wait
In context ↗ - Anxiety & low mood
I was so terrified of accepting that this may be my life
In context ↗