ME/CFS
Severe → no benefit
Severe ME/CFS, lying down all day with constant tinnitus, trying to pace better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- unknown (severe for over a year)
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
my ME has been severe for over a year now but keeps getting worse and worse
In context ↗ - At worst: Severe
I lie down all day apart from when I’m eating meals or going to the bathroom
In context ↗ - Now: No benefit
my ME has been severe for over a year now but keeps getting worse and worse
In context ↗
Read from 27 of their posts and comments; links to the 22 this page draws on
Summary
Plover 82617 has severe ME/CFS, lying down all day and able to do little beyond using a phone; constant tinnitus began when the illness became severe. They had crashed and recovered repeatedly until one crash from which they never recovered, and their self-rated function fell from 2.7 at the end of 2025 to about 1.5–2 by September 2026. They were trying to pace better; silent rest seemed to raise stress, red light helped light sensitivity, and noise-cancelling headphones could amplify internal tinnitus.
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What they tried
Also tried
smart bulb set to red· Helped a lotshaving hair· Helped a lotearplugs· HelpedBose QuietComfort ANC headphones· Helpedwhite noise· Helpedmigraine cap· Helpedacupressure mat· Helpedyoga nidra· Helpedred filter on phone screen· HelpedForest app· Helpedfrequent meditation· Helpednot fighting natural sleep schedule· Helpedsaniderm· Helpeddexamfetamine and methylphenidate· Worsedexamfetamine and methylphenidate· Worsemeal shakes· Worsecaffeine· WorseNSAIDs· Not saidGarmin watch· Not said0 stimulation rest breaks· Not said
Their words about each treatment
- dexamfetamine and methylphenidate · Worse
I tried both dexamfetamine which is a short acting version of lisdexamfetamine (elvanse) and methylfenidate.
In context ↗ - earplugs · Helped
usually with sound sensitivity I combat it by wearing noise cancelling headphones or earplugs
In context ↗ - Bose QuietComfort ANC headphones · Helped
I find Bose quiet comfort headphones very wearable.
In context ↗ - white noise · Helped
White noise seems to help with blocking out the tinnitus a little, but isn’t helpful for my sound sensitivity.
In context ↗ - NSAIDs · Not said
I don’t use NSAIDs often so likely something else causing mine.
In context ↗ - migraine cap · Helped
the intense sensation of it can be a really relieving distraction from the pain in my experience
In context ↗ - smart bulb set to red · Helped a lot
having it set to red and on minimum brightness is the lowest light I can get it to go
In context ↗ - meal shakes · Worse
I know a lot of people use meal shakes which is a great option, tho I personally can’t tolerate them.
In context ↗ - Garmin watch · Not said
Id say it’s okay, but not always super reliable on timings so sometimes I have to go back in and edit them.
In context ↗ - 0 stimulation rest breaks · Not said
any rest break I log shows as having raised my stress and heartrate instead of making me calmer
In context ↗ - acupressure mat · Helped
I find lying on my acupressure mat while listening to yoga nidra for half an hour before sleeping helps but that seems to be 50/50
In context ↗ - yoga nidra · Helped
listening to yoga nidra for half an hour before sleeping helps but that seems to be 50/50
In context ↗ - red filter on phone screen · Helped
I use a red filter on my phone screen too, it feels like it lowers the intensity of light
In context ↗ - Forest app · Helped
it’s already really helped me force myself to put my phone down
In context ↗ - frequent meditation · Helped
for me it’s looked like frequent meditation (it takes a lot of practice and am still practicing that now)
In context ↗ - shaving hair · Helped a lot
shaving my hair honestly did wonders for me for this reason ... It alleviated 90% of the sensory issues I was having surrounding it
In context ↗ - not fighting natural sleep schedule · Helped
I stopped doing that too and it did help some
In context ↗ - caffeine · Worse
For me it causes me additional symptoms so I avoid it.
In context ↗ - saniderm · Helped
I personally found saniderm great for tattoo healing
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | ME with repeated crashes and recoveryI used to crash a lot but recover each time and continue to repeat that cycleIn context ↗ | Not stated |
| over a year before September 2026 | crashed and never got betterone day I crashed and just never got better again and have now been severe for over a yearIn context ↗ | Severe |
| end of last year | self-rated function 2.7I was at a 2.7 the end of last yearIn context ↗ | Severe |
| 2026-09-16 | lying down all day, function fallen to 1.5I lie down all day apart from when I’m eating meals or going to the bathroom. ... I’m at 1.5 | Severe |
Adverse events
- Dexamfetamine (Dexedrine), Methylphenidate (Ritalin, Concerta)“I really couldn’t get on with meds for it as the stimulant meds seemed to really mess with me ... I tried the short acting version of that and had a horrible time with it sadly.” Side effects
- Radical rest“any rest break I log shows as having raised my stress and heartrate instead of making me calmer” In context ↗ Other
- Earplugs and ear defenders (Loop)“because the tinnitus sound is internal, all blocking out external sound does is amplify it and make the pain it’s causing more noticeable” In context ↗ Made symptoms worse
- White or brown noise“Unfortunately anything like brown noise is uncomfortable with my sensitivity too, despite it helping with the tinnitus part.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I always try and avoid crying because it crashes me so badly
In context ↗ - Light & noise sensitivity
I deal with sound sensitivity
In context ↗ - Tinnitus
I also have constant tinnitus (appeared when my ME became severe)
In context ↗ - Sleep problems
some one who was just awake for 35h with insomnia
In context ↗ - Anxiety & low mood
as it’s soo easy to end up in a downwards spiral thinking about the far future
In context ↗