In bed 3-4 years with ME/CFS, now nearly back to normal after walking and 5-HTP
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
When I first got ME in my early 20s I was in house and bed for 3-4 years!!!
In context ↗ - At worst: Severe
I was in house and bed for 3-4 years!!! My muscles became non existent, I was incredibly dizzy with every step!
In context ↗ - Now: Near normal
I had quite bad days the last weeks because of work aswell and noticed it again ... Today I am able again to walk for 4-6 hours outside
In context ↗
Summary
Crocus 79339 got ME in their early 20s and spent 3-4 years in the house and in bed, muscles wasting and dizzy with every step. They credit supplements such as 5-HTP and slowly walking more each day, from 10 minutes up, rather than resting completely, which they say made their state drastically worse. By their latest post they could walk 4-6 hours outside, though work had brought bad days in recent weeks.
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What they tried
Also tried
Their words about each treatment
- reducing activity to absolute minimum · Worse
reducing activity to absolute minimum (only laying in bed with eye mask etc and not going out) makes objectively sense, but it totally did the opposite for me.
In context ↗ - slowly increasing my activity level (walking outside) · Helped a lot
walked every day more. First 10 minutes, then 20, and so on.
In context ↗ - some supplements · Not said
I started to take some supplements , Serotonine for example (5htp)
In context ↗ - Serotonine (5htp) · Not said
Serotonine for example (5htp)
In context ↗
Approaches: Physiotherapy and rehab
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 dashed part: the story doesn’t say when. 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 | After |
|---|---|---|---|
| early 20s | got ME, in the house and in bed for 3-4 yearsWhen I first got ME in my early 20s I was in house and bed for 3-4 years!!! My muscles became non existent, I was incredibly dizzy with every step!In context ↗ | Severe | |
| after 3-4 years in bed | started supplements and walked daily, starting at 10 minutesThen I started to take some supplements , Serotonine for example (5htp) and walked every day more. First 10 minutes, then 20, and so on.In context ↗ | Moderate | Graded rehab and self-made programmes |
| the last weeks | bad days from workI had quite bad days the last weeks because of work aswell and noticed it againIn context ↗ | Not stated | |
| 2026-05-26 | able to walk 4-6 hours outside againToday I am able again to walk for 4-6 hours outsideIn context ↗ | Near normal |
Adverse events
- Radical rest“Yes only laying in bed (I had quite bad days the last weeks because of work aswell and noticed it again) made my state drastically (!!) worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I had quite bad days the last weeks because of work aswell and noticed it again
In context ↗ - POTS & dysautonomia
I was incredibly dizzy with every step!
In context ↗ - Muscle weakness
My muscles became non existent
In context ↗
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