Bedbound or housebound for about a month with ME/CFS, now much better with rest and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
My CFS is/was post viral and am mostly recovered now
In context ↗ - At worst: Severe
gone from healthy to fully bedbound to being able to get out occasionally
In context ↗ - Now: Much better
Im mild -> recovering now but used to be bedbound
In context ↗ - Began after: glandular fever or EBV
The stress of coming off hrt triggered an ebv reactivation which nearly killed me, and now I have cfs.
Read from 33 of their posts and comments; links to the 25 this page draws on
Summary
Sparrow 44101 developed ME/CFS after an EBV reactivation triggered by coming off HRT which nearly killed them; they were bedbound or housebound for about a month. By late 2024 they were mild and working most days despite pain and brain fog, then quit work as it kept making them worse. In September 2026 they described themselves as mild and recovering. They credit rest, pacing and avoiding alcohol, and find tramadol helpful for pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- Tramadol · Helped a lot
It’s incredible and it’s the closest I’ve felt to pre-cfs, without the crash/pain/nausea of stimulants. But no one’s gonna prescribe it long term
In context ↗ - Cutting out alcohol · Helped
Yeah I found cutting out alcohol 100% pretty important for recovery.. Not chest pains specifically but all symptoms generally better the longer its been since a drink
In context ↗ - Pacing / not pushing to exercise · Helped
Like everyone else is saying lot of rest, more than you think you need , and pacing is essential
In context ↗ - Stretches · Not said
I try to do stretches and things, but anything much more probably gonna trigger PEM
In context ↗ - Multivitamin with B12 / marmite / nutritional yeast · Helped
I do find making sure I stay on top of b12 and other vitamins/minerals helps
In context ↗ - Modafinil · Worse
(1) it’s almost guaranteed to cause a bad crash/PEM
In context ↗ - Bupropion · No change
I’ve tried bupropion and didn’t notice any effect unfortunately
In context ↗ - LSD (trips and mini-doses) · Much worse
I’ve tried mini-doses (more than micro) a few times since cfs onset and each time I’ve been in excruciating pain pretty much throughout , especially coming up
In context ↗ - Protein powders · Helped
I take plenty of protein powders which definitely help, haven’t dried d-ribose though
In context ↗ - Latex mattress topper · Helped
Holy shit I just had 12 hours of the best sleep I’ve had since before I fell sick. I feel (relatively speaking) amazing.
In context ↗ - Duloxetine · Worse
I got given antidepressants which fucked me up even more for a couple months
In context ↗ - Valerian tea · Helped
valerian tea can help, pukka brand is my fave
In context ↗ - Creatine · Helped
I’ve been on just one gram a day and it seems to help a tiny bit but I’ll try your regimen
In context ↗ - Whole-food plant-based diet · Helped
I do feel better the more careful I am with diet (less processed carbs, less fried food, less refined sugars, more fruit and veg)
In context ↗
Approaches: Diet · Other drugs and medicines · Supplements
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 |
|---|---|---|
| onset | EBV reactivation after coming off HRT; hospitalised, then bedbound or housebound for about a monthtriggered an ebv reactivation which nearly killed me, and now I have cfs. ... Immediately after ebv hospitalisation I was bedbound/housebound for like a month | Severe |
| October 2024 | mild, working most days but in constant pain and brain fog, often all day in bedI’m mild at this point, but spend most of my time in fatigue pain and thick brain fog, I manage to make it into work most daysIn context ↗ | Mild |
| September 2025 | unemployed and mostly in bed; can manage gentle hiking, short bike rides, swimming and an hour of dancingCurrently unemployed and spend most of my time in bed ... I find I can handle gentle hiking and short bike rides, and gentle swimmingIn context ↗ | Moderate |
| November 2025 | quit work; it was making them worse and worseYeah I quit work and so glad I did, it was making me worse and worse.In context ↗ | Moderate |
| September 2026 | mild and recovering, able to get out occasionally after being fully bedboundgone from healthy to fully bedbound to being able to get out occasionallyIn context ↗ | Mild |
Adverse events
- Modafinil / armodafinil“modafinil is amazing buuuut comes at the risk of a major crash once it wears off” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I find modafinil is amazing but I crash so so hard the next couple days” In context ↗ Made symptoms worse
- Modafinil / armodafinil“Modafinil doesn’t work at all if I’m too tired , and is pretty much guaranteed to make me crash really hard the next couple days” In context ↗ Made symptoms worse
- Modafinil / armodafinil“it’s almost guaranteed to cause a bad crash/PEM” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“I was given duloxetine, had a bad time on it” In context ↗ Side effects
- Bupropion (Wellbutrin), Duloxetine (Cymbalta)“I got given antidepressants which fucked me up even more for a couple months” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
it’s almost guaranteed to cause a bad crash/PEM
In context ↗ - Brain fog
spend most of my time in fatigue pain and thick brain fog
In context ↗ - Pain & fibromyalgia
if I avoid food for too long I get crippling pain
In context ↗ - Sleep problems
I sleep worse if it’s been too long since sex
In context ↗ - Muscle weakness
I also used to draw a lot but lack strength and dexterity for that a lot of the time
In context ↗
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