Home- or bed-bound for years with ME/CFS, now partly better with flexibility app and walks
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11.5 years
- Last post
- Mar 2025
In their words
- Condition: ME/CFS
how to make my house ME proof
In context ↗ - At worst: Severe
I used to be home/bed bound pretty much. ... Used to rest/sleep for 16h on a good day but mostly 20h, 22 on bad days.
In context ↗ - Now: Somewhat better
I think I went from around 20% to about 50%. ... I'm actually doing so much better & feel like I'm living again instead of just surviving.
In context ↗
Read from 19 of their posts and comments; links to the 11 this page draws on
Summary
Cardinal 32280 fell ill in 2013/2014 at age 17 and was largely home- or bed-bound for years, resting up to 22 hours daily and barely able to read half a page. From March 2020 they slowly increased activity with a flexibility app and short dog walks, later swimming 1.5 hours weekly and reading whole books. By March 2025 they rated themselves about 50% of normal, up from 20%, but still could not work and rested about 18 hours most days.
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What they tried
Their words about each treatment
- L-Carnitine · Helped a lot
it's the one medication I can definitely NOT go without
In context ↗ - B12 injections · Helped
I get B12 injections every 14 days & they really really help
In context ↗ - vit D · Helped
adding vit D helps but barely, mostly for mood
In context ↗ - SSRIs · Worse
I've used 2? Different SSRIs ever. The first made me gain weight & feel worse.
In context ↗ - tramadol · Not said
I have a prescription for tramadol but it's only for my worst days & I take it less than once a month.
In context ↗ - gluten free diet · Helped a lot
For me gluten free helps A TON.
In context ↗ - working out · Helped
I do definitely think it helped me with getting a higher baseline
In context ↗ - pacing · Helped
I prevent/try to prevent PEM by several things.
In context ↗
Approaches: Diet · Physiotherapy and rehab · Supplements
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2013/2014 | fell ill at age 17; much sicker then, hard to bend over to put on shoesI've been sick since 2013/2014 and have managed to move out in 2020 (got sick aged 17, am now 29)In context ↗ | Severe | |
| — | home/bed bound, resting 16-22 hours a day, could barely read half a pageI used to be home/bed bound pretty much.In context ↗ | Severe | |
| March 2020 | first lockdown; started moving more with a daily ten-minute flexibility app and 200-500m dog walksDuring the first lockdown in march 2020 I started to move more again.In context ↗ | Severe | Graded rehab and self-made programmes |
| March 2025 | about 50% of normal; swimming 1.5 hours weekly and reading books again, still unable to workI think I went from around 20% to about 50%.In context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“The first made me gain weight & feel worse.” In context ↗ Made symptoms worse
- Graded rehab and self-made programmes“When there was 30s high knees my heart rate would be nearing the 200.” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I tried & tried but got too much PEM.
In context ↗ - Brain fog
the brain fog for me also cleared up a lot when I paid more attention to my diet
In context ↗ - Sleep problems
Used to rest/sleep for 16h on a good day but mostly 20h, 22 on bad days.
In context ↗ - Gut problems
I get PEM & then get diarrhea & vomit until I pass out form exhaustion
In context ↗ - Temperature regulation
with my temperature regulation issues it definitely helps a ton
In context ↗ - Light & noise sensitivity
stay in bed with as little noise & light & anything for input at all
In context ↗ - Pain & fibromyalgia
I don't feel the burning of lactic acid in my muscles anymore every moment of everyday
In context ↗
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