ME/CFS
Severe → no benefitIll for 4 years
Severe ME/CFS, bedbound then bedridden; propranolol and estrogen didn't raise baseline
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 4 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I have severe CFS and POTS
In context ↗ - At worst: Severe
I have severe CFS and POTS, I’ve been bedridden for almost an entire year now.
In context ↗ - Now: No benefit
My baseline has lowered, after I was actually seeing a little bit of improvement while I was on estrogen.
In context ↗
Read from 12 of their posts and comments; links to the 7 this page draws on
Summary
Harbor 25085, in the UK, was moderate for an unknown period before becoming severe and bedbound overnight about 4-6 weeks after tapering off citalopram. After a year bedbound and a year housebound but severe, they have been bedridden since 2023, able to reach only the bathroom or kitchen and shower with a carer's help. Propranolol eased chest pressure and heart rate but did not raise their baseline; estrogen helped slightly, but stopping it lowered their baseline.
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What they tried
Also tried
Their words about each treatment
- Citalopram · No change
I didn’t feel like it was doing much for me
In context ↗ - Pacing · Not said
I’ve been trying so hard to pace
In context ↗ - Compression socks · Helped
it’s the only thing that takes the leg pain away and makes me feel even remotely okay during this current flare up
In context ↗ - Propranolol · Helped
it has definitely helped with keeping my HR from spiking and also the pressure in my chest and air hunger
In context ↗ - Sitting upright on the sofa to recondition · Worse
Both times was about 15-20 minutes. However both times it’s ended up with me having a flare up of leg pain and feeling very crashy
In context ↗ - Estrogen (HRT) · Helped
being on HRT hasn’t affected my condition in any way (I’ve actually been doing a tiny bit better if anything)
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 | After |
|---|---|---|---|
| onset | moderate ME/CFS for a while, on the edge of severe and showing signs of improvementI had been moderate for a while, I'd say I was on the edge of severe but had been showing signs of improvement.In context ↗ | Moderate | |
| — | became severe and bedbound overnight after tapering off Citalopram over about 4 weeksaround 4-6 weeks after I suddenly became severe and bedbound pretty much overnightIn context ↗ | Severe | |
| — | recovered from bedbound to housebound but still severe after being put back on CitalopramI was bedbound for like a year after that, and was put back on Citalopram. I had recovered to just housebound (but still severe) for the next yearIn context ↗ | Severe | Citalopram (Celexa) |
| — | bedridden again for the last year, cause unknownbut now for the last year I've been bedridden again. Not sure why this time.In context ↗ | Severe | |
| 2024-03 | worst crash of their life after stomach problems, bedboundBeen bedbound for the last 7 months but this is the mother of all crashes.In context ↗ | Severe | |
| 2025 | a tiny bit better while on estrogen HRTbeing on HRT hasn't affected my condition in any way (I've actually been doing a tiny bit better if anything)In context ↗ | Severe | |
| 2025-08-27 | came off estrogen, baseline lowered; still severe and bedboundMy baseline has lowered, after I was actually seeing a little bit of improvement while I was on estrogen.In context ↗ | Severe |
Adverse events
- Propranolol (Inderal)“it has made me so extremely fatigued and super sleepy all the time and I’m pretty sure it’s pushed me into PEM. I feel so weak and even just getting to the bathroom has my legs in so much pain afterwards.” In context ↗ Made symptoms worse
- Citalopram (Celexa)“I was having some withdrawal symptoms from it, mostly nausea and headaches” In context ↗ Withdrawal problems
- Estrogen (estradiol), Hormone replacement therapy (HRT)“Coming off of them was a nightmare, had worsened fatigue and insomnia for a while that's only just started to ease off.” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
even just talking for more than about 10 minutes can end up causing PEM
In context ↗ - POTS & dysautonomia
I have severe CFS and POTS
In context ↗ - Pain & fibromyalgia
The pain all down my legs is excruciating.
In context ↗ - Sleep problems
my body won't seem to let me sleep more than 8-9 hours, feels like I need double that
In context ↗ - Anxiety & low mood
I keep having massive anxiety attacks.
In context ↗ - Gut problems
My stomach is giving me problems again tonight
In context ↗ - Heart symptoms & palpitations
my HR goes crazy again
In context ↗ - Breathlessness
the pressure in my chest and air hunger
In context ↗ - Headaches & migraine
mostly nausea and headaches
In context ↗