Housebound and living in darkness with ME/CFS, now somewhat better with diazepam
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I have been living with ME for nearly 3 years since first getting covid.
In context ↗ - At worst: Severe
I have been my worst (bedbound) for months ... still now have to lie or recline 23hrs a day.
- Now: Somewhat better
I have made some progress over the last 8 weeks ... I still spend a lot of the day in the dark but with dark sunglasses on I can move around
In context ↗ - Began after: COVID
A month after this, I had COVID for the first time and this started this hell off.
Read from 13 of their posts and comments; links to the 10 this page draws on
Summary
Creek 16911 became ill with ME after a COVID infection in 2022, having had glandular fever earlier. The illness relapsed and remitted, with remissions in which they ran and hiked. From April 2024, after a fifth COVID vaccine, they deteriorated, becoming housebound in August and living in darkness after another infection. By May 2025, diazepam had let them move about in dark sunglasses and take small outdoor walks.
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What they tried
Also tried
Their words about each treatment
- mindfulness/meditation/breathing practises · Helped
I sandwich the activity in between mindfulness/meditation/breathing practises ... I feel like it sometimes helps a bit.
In context ↗ - decaf coffee · Not said
as long as I don't drink too much I don't think coffee does affect my tachycardia significantly, but I sort of wanted to eliminate it so not to confound my attempts at trying to control my tachycardia better.
In context ↗ - Diet (minimal sugar and UPFs) · Helped
1. Diet- cleaning it up, minimal sugar and UPFs.
In context ↗ - Pacing · Helped
2. Pacing, with reference to heart rate and heart rate variability.
In context ↗ - Visible and Fitbit · Helped
Used visible for this, but also was doing it before with my fit bit.
In context ↗ - Acceptance · Helped
4. Acceptance- whatever this means, but basically lost almost everything so wasn't looking down the barrel of more losses
In context ↗ - Propranolol · Helped
3. Propranolol for tachycardia and orthostatic intolerance.
In context ↗ - LDN · Worse
It made my symptoms substantially worse even on really low doses (0.05mg). It caused a bit if a crash actually.
In context ↗ - diazepam · Helped
I have made some progress over the last 8 weeks. Which was initially initiated by taking diazepam so I could travel to a clinic.
In context ↗ - sunlight exposure with eyes blacked out · Worse
I recently was advised to expose myself to sunlight but with eyes blacked out with masks ... A crack must have allowed light in for a short bit and it caused me to crash.
In context ↗ - COVID vaccination as treatment · Worse
Also the vaccine, I was fine with the first 3 covid vaccines but the 4th wrecked me and I haven't recovered yet.
In context ↗
Approaches: CBT & mindset · Benzodiazepines · Beta-blockers · 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 |
|---|---|---|
| 2022 | ME began after first COVID infectionInitially I had this relapsing remitting pattern where I would recover for it to be triggered again.In context ↗ | |
| 2022-2024 | remissions when they ran, hiked and worked hardthere have been periods during the two remissions where I have ran, hiked, worked hardIn context ↗ | |
| April 2024 | relapse after fifth COVID vaccine, deteriorating sinceI relapsed for the third time in April 2024 after my 5th covid vaccine and have been deteriorating ever since.In context ↗ | |
| August 2024 | became entirely houseboundI've been entirely housebound since August 2024In context ↗ | |
| November 2024 | severe light sensitivity after another COVID infection, lived in pitch blackFor around 3 months I had to live in pitch black 24/7 with cardboard in layers over the windows and wearing eye masks.In context ↗ | |
| May 2025 | light sensitivity improved; can move about in sunglasses and take short walkswith dark sunglasses on I can move around, make tea or quick things in the day. And at night I now function fairly well. Even go on small outdoors walks sometimes.In context ↗ | Diazepam (Valium) |
Adverse events
- Low-dose naltrexone“It made my symptoms substantially worse even on really low doses (0.05mg). It caused a bit if a crash actually.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Also the vaccine, I was fine with the first 3 covid vaccines but the 4th wrecked me and I haven't recovered yet.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I relapsed for the third time in April 2024 after my 5th covid vaccine and have been deteriorating ever since.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have times when I consistently push and I pay for it, but it doesn't knock my baseline
In context ↗ - Brain fog
The symptoms feel very neurological biased with such severe light sensitivity and sensory processing issues as well as cognitive impairment.
In context ↗ - Light & noise sensitivity
For around 3 months I had to live in pitch black 24/7 with cardboard in layers over the windows and wearing eye masks.
In context ↗ - POTS & dysautonomia
Propranolol for tachycardia and orthostatic intolerance.
In context ↗ - Heart symptoms & palpitations
I have had a spell of really bad tachycardia
In context ↗ - Gut problems
crashes were from overexertion, stress, affected by my IBS or often unknown
In context ↗ - Mast cell (MCAS) & allergies
I suspect it made my allergies worse
In context ↗ - Vision problems
The problem is also visual processing, colours look wrong
In context ↗ - Temperature regulation
I have thought it could be a result of heat, which I don't tolerate well
In context ↗
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