Bedbound with ME/CFS for about two years, now moderate-severe after pacing and acceptance
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
march 2020 (which triggered the start of my cfs)
In context ↗ - At worst: Severe
I'm 21 and have been bedbound for about 2 years.
In context ↗ - Now: Somewhat better
I have gone from severe to moderate-severe
In context ↗ - Began after: COVID
I got it once from 6th form in march 2020 (which triggered the start of my cfs)
In context ↗
Read from 11 of their posts and comments; links to the 8 this page draws on
Summary
They date their CFS to a COVID infection at sixth form in March 2020, and said a February 2022 infection turned it from mild to severe. By October 2023 they had been bedbound for about two years. Venlafaxine helped their depression and made life more bearable but did not help fatigue; missing a dose caused brain zaps and vivid dreams. Later they credited accepting the illness and learning pacing with moving from severe to moderate-severe.
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What they tried
What they credit
Also tried
Their words about each treatment
- paracetamol · Not said
Also paracetamol for the aches and pains.
In context ↗ - venlafaxine (SNRI) · Helped
I started venlafaxine (snri) fo depression and while it didnt help with the fatigue it has let me experience happiness again ... Although if I miss even one dose I get brain zaps and the WEIRDEST most vivid dreams I have ever experienced
- electrolytes / lucozade sport / salt · Helped
I drink lucozade sport and that helps a little. Electrolytes seem to do something ... making sure I get enough salt makes parts of my crashes a little less severe
- steam inhalation with tea tree, peppermint and eucalyptus oil · Not said
for sinuses I inhale steam with tea tree, peppermint, and eucalyptus oil in
In context ↗ - ibuprofen · Helped
I recommend ibuprofen (with food) for the pain but that's the only medication I've found that helps
In context ↗ - pacing · Helped
I have been able to learn pacing and say no to things, and I have gone from severe to moderate-severe
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. 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 |
|---|---|---|---|
| March 2020 | COVID-19 at sixth form triggered CFSI got it once from 6th form in march 2020 (which triggered the start of my cfs)In context ↗ | Mild | |
| February 2022 | COVID-19 from university roommates; CFS turned from mild to severeonce from my university roommates in february 2022 (which turned my cfs from mild to severe)In context ↗ | Severe | |
| October 2023 | bedbound for about two yearsI'm 21 and have been bedbound for about 2 years.In context ↗ | Severe | |
| August 2024 | venlafaxine improved moodit has let me experience happiness again and had made life infinitely more bearableIn context ↗ | Not stated | Venlafaxine (Effexor) |
| July 2026 | moved from severe to moderate-severe after accepting illness and pacingI have gone from severe to moderate-severeIn context ↗ | Moderate | Pacing and the energy envelope |
| August 2026 | accepting permanence and pacing; no longer overdoesaccepting that the condition could be permanent has helped me massively because I no longer overdo itIn context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Venlafaxine (Effexor)“if I miss even one dose I get brain zaps and the WEIRDEST most vivid dreams I have ever experienced, and wake up covered in sweat” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
making sure I get enough salt makes parts of my crashes a little less severe
In context ↗ - Pain & fibromyalgia
I recommend ibuprofen (with food) for the pain
In context ↗ - Anxiety & low mood
I started venlafaxine (snri) fo depression ... which made me suicidal
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