ME/CFS
Severe → no benefitIll for 10 years
Mostly bedbound with ME/CFS, still moderate to severe after ADHD medication and endep
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Mar 2025
In their words
- Condition: ME/CFS
My cfs is severe -moderate I’m bed bound most of the time at the moment
In context ↗ - At worst: Severe
My cfs is severe -moderate I’m bed bound most of the time at the moment
In context ↗ - Now: No benefit
I am moderate to severe. ... Can get up to the toilet and once a week sit in the back yard for five minutes
In context ↗ - Began after: nothing they could name
I suspect I've had mild mecfs for a decade or so before I became severe.
In context ↗
Read from 15 of their posts and comments; links to the 8 this page draws on
Summary
A Reddit user with ME/CFS, POTS and ADHD was mostly bedbound and severe to moderate in 2023, after suspecting a decade of milder ME/CFS. They could walk around the house on good days and once a week or fortnight reach the park; later only the toilet and five minutes in the backyard. They tried ADHD medication, endep for nerve pain and migraine, CBD, meditation and an acupressure mat, but remained moderate to severe.
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What they tried
Also tried
dex· Helpedcbd oil· Helpedmeditation· Helpedacupressure mat· Helpedloop earplugs with noise cancelling headphones· Helpedlying down totally flat on the floor· Helpedstretches and karate moves· Worseendep· Not saidclonidine· Not saidvitimin d· Not saidfish oil· Not saidfull rest with eye mask and earplugs· Not saidelectrolytes· Not said
Their words about each treatment
- dex · Helped
I started today just taking half my dose of dex to get back used to it.
In context ↗ - cbd oil · Helped
was managing with meditation/ cbd oil and not having responsibilities does help a lot with managing most symptoms of adhd
In context ↗ - meditation · Helped
for sanity I do guided meditations I find someone being like “relax and breathe ! “ helps me not just mind wander
In context ↗ - endep · Not said
Im on endep 10mg for nerve pain / migraine type cfs stuff and cbd
In context ↗ - clonidine · Not said
I started on clonidine recently too I think
In context ↗ - vitimin d · Not said
I take vitimin d and fish oil when I can remember
In context ↗ - full rest with eye mask and earplugs · Not said
So I am tryyying to be better at doing full rest at least a few hours a day, eye mask / earplugs
In context ↗ - electrolytes · Not said
Lots of electrolytes.
In context ↗ - stretches and karate moves · Worse
did some stretches and some (lol ) karate moves with my arms punching the air ... but I crashed after so i have avoided it
In context ↗ - acupressure mat · Helped
I find the acupressure just helps with the pain but not really long term though.
In context ↗ - loop earplugs with noise cancelling headphones · Helped
I’ve been using my loop earplugs with my noise cancelling headphones! Helps a lot
In context ↗ - lying down totally flat on the floor · Helped
Even lying down totally flat on the floor feels a bit helpful
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 |
|---|---|---|
| — | gradual onset; a decade of mild ME/CFS before becoming severeI suspect I've had mild mecfs for a decade or so before I became severe.In context ↗ | Mild |
| 2023-04 | bedbound, severe to moderateMy cfs is severe -moderate I’m bed bound most of the time at the moment can walk around the house on my good days and occasionally about once a week/fortnight walk to the park and cafe down the street.In context ↗ | Severe |
| 2025-01 | crashed after stretching and karate movesdid some stretches and some (lol ) karate moves with my arms punching the air ... but I crashed after so i have avoided it.In context ↗ | Severe |
| 2025-03 | still moderate to severe, mostly in bedI am moderate to severe ... Can get up to the toilet and once a week sit in the back yard for five minutesIn context ↗ | Severe |
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I get pem two days after big events and often like short immediately feeling of pem after over doing it when my baseline is already low
In context ↗ - Brain fog
trying to pay attention to my heart rate and brain fog helped me a little
In context ↗ - POTS & dysautonomia
I also have POTS severe ME and adhd
In context ↗ - Pain & fibromyalgia
spending most of the day in bed is really taking it’s toll on my neck and shoulders
In context ↗ - Headaches & migraine
endep 10mg for nerve pain / migraine type cfs stuff
In context ↗ - Anxiety & low mood
increasing anxiety and panic is normal for when I get into PEM and can even be a sign for me now that I have over done it
In context ↗ - Flu-like symptoms
in the months leading up to becoming severe I would get extremely dopey and have to sleep and more flu like symptoms
In context ↗