ME/CFS
Severe → no benefitIll for 9 years
Severe ME/CFS still worsening, with no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 9 years
- Last post
- Feb 2024
In their words
- At worst: Severe
My CFS has been progressing from mild/moderate, to severe, to almost very-severe now.
In context ↗ - Now: No benefit
I'm now in my 10th year and I still get a few % worse each year on average
In context ↗
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
A man ill since about 2015 described his ME/CFS progressing from mild/moderate to severe, still worsening a few percent a year by his tenth year; he had severe muscle pain and stayed as still as possible, using his muscles only to eat and reach the bathroom. LDN gave only small pain relief, painkillers and stimulants each worsened other symptoms, and only opioids, a memory foam topper and avoiding all exertion helped.
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What they tried
Also tried
LDN· HelpedNo unnecessary movement ever, no exercise, no stretching· HelpedMemory foam mattress topper and pillows· HelpedOpioids· HelpedPrescription overnight eye ointment/gel (carbomer)· HelpedEye drops· No changePainkillers (non-opioid)· WorseStimulants· WorsePushing / exercising out of the illness· Much worseRed Bull· Not said
Their words about each treatment
- Painkillers (non-opioid) · Worse
none of them helped and they made my other symptoms worse
In context ↗ - Stimulants · Worse
if I take stimulants for my fatigue, it makes my pain worse
In context ↗ - Red Bull · Not said
This. Happens almost every time. ... But 1/10 times it gives me a nice boost of energy and that makes it worth it.
In context ↗ - LDN · Helped
Just small pain relief.
In context ↗ - No unnecessary movement ever, no exercise, no stretching · Helped
For me this is the only way to prevent muscle pain from spiralling out of control.
In context ↗ - Memory foam mattress topper and pillows · Helped
This has made a huge difference in my pain levels.
In context ↗ - Opioids · Helped
The only painkillers that work for me are opioids.
In context ↗ - Eye drops · No change
Eye drops during the day never helped enough
In context ↗ - Prescription overnight eye ointment/gel (carbomer) · Helped
I use a prescription overnight eye ointment/gel, and that fixes most of my burning eye pain.
In context ↗ - Pushing / exercising out of the illness · Much worse
It made me permanently worse, I know that for a fact for my own body.
In context ↗
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 |
|---|---|---|
| onset | ME/CFS began, mild to moderateMy CFS has been progressing from mild/moderate, to severe, to almost very-severe now.In context ↗ | Mild |
| 2023-03-08 | severe for almost a decade, now almost very-severe with severe muscle painAlso 29yo male, been severe for almost a decade now. My CFS has been progressing from mild/moderate, to severe, to almost very-severe now.In context ↗ | Severe |
| 2024-02-10 | still getting a few percent worse each year, permanent damage from not pacingI'm now in my 10th year and I still get a few % worse each year on average, and it keeps stacking each yearIn context ↗ | Severe |
Adverse events
- “I have to take painkillers for my severe pain, which make my CFS fatigue/brain fog much worse.” In context ↗ Made symptoms worse
- Stimulants (unspecified)“And if I take stimulants for my fatigue, it makes my pain worse.” In context ↗ Made symptoms worse
- “I went through extremely bad withdrawal as well.” In context ↗ Withdrawal problems
- Everyday exercise and activity“but all of this makes my CFS muscle pain worse, not better.” In context ↗ Made symptoms worse
- “I've tried every possible recommended painkiller for cfs/fibromyalgia pain, but none of them helped and they made my other symptoms worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Exertion & not-pacing is toxic and makes me worse, every single time.
In context ↗ - Brain fog
which make my CFS fatigue/brain fog much worse
In context ↗ - Pain & fibromyalgia
Severe muscle pain has been one of my biggest problems.
In context ↗ - Light & noise sensitivity
If I get any sunlight my eyes will burn the entire day.
In context ↗