Bedbound with ME/CFS for three months, now much better with pacing and rest
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 months
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I have mild to moderate ME/CFS which is why I still have a somewhat busy life.
In context ↗ - At worst: Severe
me crashing hard around August leading to me being bedbound for 3 months and now, finally being able to walk again
In context ↗ - Now: Much better
I am a lot better now and can do a lot more stuff, but it’s only because I cut out a lot of strenuous activity.
In context ↗ - Began after: another virus
Before I got the flu in February last year which lead to post viral fatigue syndrome
Read from 20 of their posts and comments; links to the 15 this page draws on
Summary
Post-viral fatigue after flu and pneumonia in early 2025, while working 80-hour weeks; a crash in August 2025 left them bedbound for three months. Pacing, rest, a cane and wheelchair, and liquid food brought them back to mild to moderate by late 2025 and mild by early 2026 — working one day a week, socialising weekly or fortnightly, mostly resting in bed. Progressive arm and hand weakness began in late 2025.
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What they tried
What they credit
Also tried
Their words about each treatment
- kept working out at the same intensity · Much worse
The first few months of my symptoms hitting I kept working out at the same intensity. I simply pushed through
In context ↗ - anti depressants · No change
I did try about ever single anti depressant even tho I knew the wouldn’t work.
In context ↗ - cannabis (weed) · Helped
I smoked for the first time since getting sick again yesterday and I was surprised while I suddenly felt so good lol
In context ↗ - progesterone only pill · Helped
My baseline improved tho because my periods where so heavy and painful they triggered PEM simply by happening.
In context ↗ - ADHD meds · Helped
Usually my ADHD meds and copious amounts of caffeine help against tiredness, but they do nothing against this new tiredness.
In context ↗ - pacing / journaling energy levels · Helped
What helped me was journaling my days and energy levels throughout the day.
In context ↗ - cane and wheelchair · Helped
It gave me a lot of quality of life back, I can go out longer, have more fun and don’t need to worry about leg pain or standing fatigue.
In context ↗ - liquid food · Helped
Also liquid food. It’s a god send.
In context ↗ - reading lying down with a page opener · Helped
Holding a book strains my hands so I got one of those page opener thingies you can put on your thumb, that helped a lot.
In context ↗ - heavy course of steroids · Helped
I stopped having the fevers after a heavy course of steroids, but the pain and fatigue stayed.
In context ↗ - drinking through straws · Helped
I switched to using straws only and it’s been really helpful
In context ↗ - GET (graded exercise therapy) · No change
My GP keeps telling me to do GET which I know doesn’t help me personally
In context ↗ - Apple Watch health tracking · Not said
I kept wearing my Apple Watch all that time and let it keep tracking everything.
In context ↗ - Opioids (unspecified) · Not said
allergies to opiates
In context ↗
Approaches: Diet · Pacing · Sex hormones
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2025 | Symptoms began after flu; kept working full time and training hardI started having symptoms in march and crashed in August, until August I worked full time and worked out (weightlifting and climbing) several times a week.In context ↗ | Mild | |
| August 2025 | Crashed hard and was bedbound for three monthscrashing hard around August leading to me being bedbound for 3 months and now, finally being able to walk again.In context ↗ | Severe | |
| October 2025 | Back to moderate-mild after pacing and restI am now back to moderate-mild most days and I want to prevent crashing ever again.In context ↗ | Moderate | Pacing and the energy envelope |
| 2026-01-01 | Mild: working one day a week, otherwise resting in bedI can clean my own place, socialise once every week or two, work one day a week for 5 hoursIn context ↗ | Mild |
Adverse events
- Progestin-only birth control (mini pill, implant or shot)“It has no side effects for me except orgasm being slightly more difficult to reach.” In context ↗ Side effects
- Opioids (unspecified)“allergies to opiates” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
worked despite PEM until I crashed hard
In context ↗ - POTS & dysautonomia
I fit POTS too.
In context ↗ - Sleep problems
I sleep almost 24/7
In context ↗ - Pain & fibromyalgia
My arms are constantly sore like after a big workout
In context ↗ - Muscle weakness
I can’t hold anything up for longer than a few seconds, not even my phone.
In context ↗ - Heart symptoms & palpitations
My average heart rate went from 90 to 120 during rest and from 140 max to 200 max while being active.
In context ↗ - Temperature regulation
lead to incredibly high fevers, pains, fatigue etc.
In context ↗
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