ME/CFS
Mild → no benefit
Working with ME/CFS, very challenging and poor mental health, no improvement from B12
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- Not stated
- Last post
- Nov 2022
In their words
- At worst: Mild
It’s been very challenging to keep working, in all honesty I got to a point where I should have stopped
In context ↗ - Now: No benefit
I’m working on surviving!! I’m focusing on pacing, I still don’t have it figured out
In context ↗
Read from 9 of their posts and comments; links to the 6 this page draws on
Summary
A UK Reddit user with CFS who was still working, though it was very challenging and their mental health was poor. An 18-month PIP claim let them permanently lower their hours, which they say helped, and they were working from home during the pandemic. They focused on pacing, which they had not fully figured out, rested in bed with their eyes closed when exhausted, had quarterly B12 injections that did not seem to help, and tried earplugs for sound.
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What they tried
Also tried
Their words about each treatment
- mindfulness · No change
I know some people use mindfulness to re-charge a bit but it’s never worked for me
In context ↗ - lying in bed with eyes closed for half an hour · Helped
I lie in bed with my eyes closed for half an hour, it feels more restful than the sofa
In context ↗ - B12 injections · No change
my B12 is chronically low so I’m on quarterly injections. Mine don’t seem to help but they don’t seem to be hurting either
In context ↗ - pacing · Not said
I’m focusing on pacing, I still don’t have it figured out and find the fatigue from emotional situations still catches me by surprise
In context ↗ - earplugs · Helped
I have tried earplugs which block the sound great but I find them uncomfortable, I may try again though
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020-11-26 | struggling to keep working; mental health poorIt’s been very challenging to keep working, in all honesty I got to a point where I should have stopped but my MH was awfulIn context ↗ | Mild |
| 2021-06-04 | PIP awarded after 18 months, permanently lowered their work hoursIt took me 18 months to get it but I was able to permanently lower my hours at work which helped.In context ↗ | Mild |
| 2022-11-18 | still troubled by sound, tried earplugsI have tried earplugs which block the sound great but I find them uncomfortableIn context ↗ | Mild |
Adverse events
- “I’ve had bad experiences in the past with being prescribed drugs which don’t work well together, or even made me much more unwell (from a previous Doctor)” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Light & noise sensitivity
I have tried earplugs which block the sound great but I find them uncomfortable
In context ↗ - Sleep problems
When I’m trying not to nap but am exhausted I lie in bed with my eyes closed for half an hour
In context ↗ - Anxiety & low mood
my MH was awful and I don’t like to think of the consequences if I’d had to leave work
In context ↗