Severe ME/CFS, mostly bedbound, somewhat better with pacing and rest

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 15 years
Last post: Oct 2026

In their words

Condition: ME/CFSi have severe ME. i have been ill for more than a decade (i stopped counting) In context ↗
At worst: Severei started (in 2015/16) as moderate, and more recently (since early 2021?) i’ve been in the low-middle end of severe, occasionally dipping into very severe in crashes In context ↗
Now: Somewhat betteri can now watch (limited) tv and sit up without too much trouble. last year i was lying down 90% of the time. ... still definitely severe In context ↗
Began after: glandular fever or EBVi think it’s possible it tied in with glandular fever/mono

Read from 290 of their posts and comments; links to the 42 this page draws on

Summary

Beacon 32165 has had ME/CFS for more than a decade, closer to 15 years than 10. They have been severe and mostly bedbound, and credit pacing, rest and time with a small improvement that let them sit up and watch around ten minutes of a low-stimulation show. A dental procedure caused two months of hell, and continuing university directly harmed them and led to years of severe ME/CFS.

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What they tried

What they credit

pacing / resting within energy limits· Helped a lot · main time / luck· Helped a lot

Also tried

manual wheelchair· Helped a lot more salt / electrolytes· Helpedgentle exercise within limits (treadmill walking, trampolining)· Helpedcocodamol (codeine & paracetamol)· Helped · wore offnaproxen· Helped diclofenac· Helpedcodrydamol (dihydrocodeine & paracetamol)· Helpedoramorph· Helped amitriptyline· Helped · wore off vitamin d· Helpedwalking sticks / cane· Helpedpower assist (SmartDrive)· HelpedDBT radical acceptance· HelpedLoop Quiet earplugs and noise-cancelling headphones· HelpedTachymon / FatigueSense / Apple Watch· Helpedgaviscon / antacids· Helpeddiazepam· Helpedheat (hot water bottle, heating pad, hot baths)· Helpedelectric body brush/scrubber· Helpedvitamin b· No change radical / aggressive resting· Worse meditation / mindfulness· Worse pregabalin· Worse omega 3· Not said glucosamine· Not said iron tablets· Not saidmultivitamin (Healthspan Multivitality Gold)· Not said

Their words about each treatment

more salt / electrolytes · Helpedmy unquenchable thirst was helped by having more salt than normal folks need In context ↗
gentle exercise within limits (treadmill walking, trampolining) · Helpedi was able to gently exercise (predominantly walking on a treadmill, but not solely) at the gym without repercussions In context ↗
cocodamol (codeine & paracetamol) · Helpedi was on cocodamol (codeine & paracetamol) but it got to a point it made me more nauseated than gave pain relief In context ↗
naproxen · Helpednaproxen worked a bit iirc In context ↗
diclofenac · Helpednaproxen worked a bit iirc but diclofenac has been my favourite for a few years now In context ↗
codrydamol (dihydrocodeine & paracetamol) · Helpedthings ive been prescribed that helped at some point/ are helping ... cocodamol/codrydamol In context ↗
oramorph · Helpedoramorph (very low dose) In context ↗
amitriptyline · Helpedhelped me some till it didn’t. managed to get an extra so long out of it by going up slower than the doctor wanted In context ↗
vitamin d · Helpedvitamin d tbh is the only one w a noticeable effect In context ↗
omega 3 · Not saidi also take omega 3 and glucosamine but thats mostly habit than anything else In context ↗
vitamin b · No changei took a vitamin b one for a bit ... no real difference noticed tho. In context ↗
iron tablets · Not saidim now just on iron tablets bc the drs didnt like my blood test results In context ↗
multivitamin (Healthspan Multivitality Gold) · Not saidi’ve used healthspan for years with no issue (decades, probably!) In context ↗
walking sticks / cane · Helpedi bought walking sticks myself & they helped a lot when i was moderate (2016?) In context ↗
manual wheelchair · Helped a loti bought walking sticks myself & they helped a lot when i was moderate (2016?). i then bought a cheap wheelchair from a mobility aids shop (2019?) In context ↗
power assist (SmartDrive) · Helpedpower assist just means i don’t get worn out as quickly In context ↗
pacing / resting within energy limits · Helped a lotpacing is how i’m able to do stuff more broadly In context ↗
time / luck · Helped a loti can now watch (limited) tv and sit up without too much trouble. last year i was lying down 90% of the time. just luck & being careful about using energy. In context ↗
radical / aggressive resting · Worseradical rest makes me more unwell - primarily because of the impact on my mental wellbeing In context ↗
meditation / mindfulness · Worsewhenever i do any kind of mindfulness practice, my pain goes from the steady 7-8/10 i experience to ‘unbearable’ In context ↗
DBT radical acceptance · Helpeddbt: radical acceptance (specifically taking chronic illness into account) helped me In context ↗
Loop Quiet earplugs and noise-cancelling headphones · Helpedthe loop quiets fit the ‘mute’ things they do which cut out almost all sound for me & it was really great In context ↗
Tachymon / FatigueSense / Apple Watch · Helpedmore useful for me has been tachymon where it just tells me to the second when my heart rate is too high In context ↗
gaviscon / antacids · Helpedpain in chest (resolved w gaviscon) In context ↗
diazepam · Helpedfinally went a couple months ago - which was just about doable with diazepam In context ↗
heat (hot water bottle, heating pad, hot baths) · Helpedit’s more akin to a hot bath (presumably because of the water) which helps me a lot In context ↗
electric body brush/scrubber · Helpedi have used this electric body brush/scrubber twice now and it is a lot easier for me energy wise In context ↗
pregabalin · Worseruined my memory & made me gain weight without any symptom relief In context ↗

Approaches: Pacing

Their path

What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.

When	What happened	After
unknown	no clear onset; never well as a child; possible glandular feveri have never been a “well” person even as a 5yo. In context ↗
2012	crash, housebound/possibly bedbound2012 crash (housebound mbe bedbound) In context ↗
2016	at university, top end of moderate2016 uni (top end of moderate) In context ↗	Pacing and the energy envelope
2022	finished university, severe from overexertion2022 finished uni (as severe) In context ↗
2024-07	worst crash, very severemy worst crash (put me into very severe) In context ↗
2025-04	able to be upright, tolerate light and watch videosi have recently gone from in the dark, always lying down, limited phone use to able to be upright, in the light, able to watch videos… In context ↗	Pacing and the energy envelope
2025-12	massive medical exertion, bedbound over Christmasnow i had a massive medical exertion and i don’t know if ill be able to even see christmas outside of my bed. In context ↗
2026-04	slight improvement, one notch upits a slight improvement but like one notch up on the scale rather than anything particularly exhilarating In context ↗
2026-10	limited TV again lying flat; still severei have only recently been able to watch stuff again if i am lying flat with the screen darker In context ↗

Adverse events

Wheelchair (manual or powered)“so pushed for much too long and I am still mostly bedbound almost 2 months on” In context ↗ Made symptoms worse
“it got to a point it made me more nauseated than gave pain relief ... cocodamol made me violently nauseous (to the point it was worse than the pain!)” Gut side effects
Amitriptyline (Elavil)“my daily steps went from 4000 to 400 because i was barely able to sit up ... 10mg was intolerable and i had instant relief from stopping” Made symptoms worse
“quite frankly, i did it and accepted the repercussions (2 months of hell)” In context ↗ Made symptoms worse
“i did start shaking violently from the anaesthetic (hands especially but generally too)” In context ↗ Side effects
Meditation, yoga, breathwork“whenever i do any kind of mindfulness practice, my pain goes from the steady 7-8/10 i experience to ‘unbearable’” In context ↗ Made symptoms worse
Pregabalin (Lyrica)“ruined my memory & made me gain weight without any symptom relief ... it never returned to where it was” Side effects
Wheelchair (manual or powered)“i got a standard one but that caused me a lot of pain & was unusable for me” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Muscle weakness POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems

Their words about their symptoms

Post-exertional malaisewith no pem when even walking half the distance would’ve left me feeling awful for days In context ↗
Brain fogi have a lot of cognitive dysfunction (memory, word finding, speaking coherently etc In context ↗
POTS & dysautonomiaive been handwaving w a pots/oi label and treating it myself w salt which helps me In context ↗
Sleep problemswhen i have done too much in a day i struggle to sleep In context ↗
Pain & fibromyalgiathe severe pain that i am in every single second of the day In context ↗
Headaches & migrainei have a headache more often than not In context ↗
Gut problemsthe only time i’ve had paramedics come was because of stomach pain (& vomiting) In context ↗
Light & noise sensitivityi have a lot of noise sensitivity though In context ↗
Heart symptoms & palpitationsit can go up to 140s from standing up to get to the bathroom In context ↗
Muscle weaknessmy main issue with walking was always my legs In context ↗
Anxiety & low moodmy mental health plummets at the end of the PEM period In context ↗
Flu-like symptomsoften it’ll be a sore throat or stuffed up nose In context ↗

Severe ME/CFS, mostly bedbound, somewhat better with pacing and rest

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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