ME/CFS
Severe → no benefitNeeds ongoing treatment
Severe ME/CFS, still recumbent; pacing and gabapentin brought no functional gain
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- At worst: Severe
I have severe ME/CFS with gradual onset, no obvious infection trigger
In context ↗ - Now: No benefit
But that doesn't translate to any functional improvements because I still have to avoid basically everything as much as possible.
In context ↗ - Began after: nothing they could name
I have severe ME/CFS with gradual onset, no obvious infection trigger
In context ↗
Read from 24 of their posts and comments; links to the 16 this page draws on
Summary
Gradual-onset severe ME/CFS with years of nerve pain, recognised in mid-2025. Pacing plus gabapentin, clonazepam and other medications made their days and pain about 20% more tolerable but brought no functional gain. A two-day CPET for an insurance claim worsened their baseline; by mid-2026 they stayed recumbent, needed a caregiver to shower monthly and still crashed from cognitive exertion.
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What they tried
Also tried
guanfacine· Helped a lotgabapentin / Horizant· HelpedClonazepam / Klonopin· Helpedpacing· HelpedMagnesium Glycinate· Helpedelectrolytes· HelpedAdderall· Helpedmeditation / deep breathing· Helpedheating pad· Helpedketamine infusions· HelpedCymbalta (duloxetine)· Worsebody doubling· Worse2 day CPET· WorseCromolyn Rx· Not saidDAO enzymes· Not saidlow histamine diet· Not saidubiquinol· Not saidLDN· Not saidloratadine· Not saidhydroxizine· Not saidatenolol· Not saidl theanine· Not saidedibles (cannabis)· Not said
Their words about each treatment
- gabapentin / Horizant · Helped
I take horizant which is kind of like ER gabapentin once a day for a baseline reduction in nerve pain. And a few 100mg gabapentin throughout the day ... the gabapentin definitely helps
In context ↗ - Cymbalta (duloxetine) · Worse
I'm currently tapering off of it as it is making me be more wired and on edge.
In context ↗ - Cromolyn Rx · Not said
Been using Cromolyn Rx and DAO enzymes.
In context ↗ - low histamine diet · Not said
Been using Cromolyn Rx and DAO enzymes. Low histamine diet.
In context ↗ - ubiquinol · Not said
ubiquinol - started this literally 5 days ago. can stop for now
In context ↗ - Clonazepam / Klonopin · Helped
In the end, I needed to start using Clonazepam couple times a week to not deteriorate.
In context ↗ - guanfacine · Helped a lot
Guanafacine made a significant difference for me.
In context ↗ - pacing · Helped
Pacing and some meds have helped make my day and pain like 20% more tolerable.
In context ↗ - Magnesium Glycinate · Helped
Magnesium and electrolytes help a bit with that.
In context ↗ - Adderall · Helped
I feel like it quiets the thoughts a bit and helps me nap or shutdown. That feels more challenging on days I don't take Adderall
In context ↗ - LDN · Not said
maybe upping my LDN
In context ↗ - loratadine · Not said
I guess I will take loratadine when I am in a flare like now.
In context ↗ - hydroxizine · Not said
I take gabapentin, Horizant, atenolol, klonopin, l theanine, magnesium, hydroxizine.
In context ↗ - meditation / deep breathing · Helped
I do that multiple times a day. It's necessary to calm down the pain.
In context ↗ - heating pad · Helped
Using a heating pad on my chest helped a bit ... I need my heating pad to achieve rest
- edibles (cannabis) · Not said
Edibles make the window of mental stimulation that will make me feel relaxed is very small. Anything over or under induces anxiety.
In context ↗ - body doubling · Worse
I used to do a lot of body doubling before I knew I had ME. It gave me motivation to push through my ME symptoms and likely made me worse.
In context ↗ - 2 day CPET · Worse
I did the 2 day CPET last year for my LTD claim. ... It worsened my baseline
In context ↗ - ketamine infusions · Helped
How about ketamine infusions? I got a few prior to my ME diagnosis when I thought my issues were psychological. It helped with depression.
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 | After |
|---|---|---|---|
| onset | gradual onset of ME/CFS, no obvious triggerI have severe ME/CFS with gradual onset, no obvious infection triggerIn context ↗ | Not stated | |
| 2025-06-24 | realised they had ME/CFS; constant pain and sensory overload, decliningI feel I've reached a point where meditation and pacing by themselves won't be enough to stop my decline.In context ↗ | Moderate | |
| 2025 | two-day CPET for an insurance claim worsened their baselineI did the 2 day CPET last year for my LTD claim. ... It worsened my baselineIn context ↗ | Severe | |
| 2025-12-07 | declined to showering once a month with a caregiverNow, I shower once a month with a caregiver.In context ↗ | Severe | |
| 2026-06-01 | pacing and meds made days and pain about 20% more tolerablePacing and some meds have helped make my day and pain like 20% more tolerable.In context ↗ | Severe | Pacing and the energy envelope |
| 2026-06-06 | staying recumbent to avoid crashes, still crashing from cognitive exertionmostly able to avoid major physical crashes by staying recumbent and getting helpIn context ↗ | Severe |
Adverse events
- Cannabis (THC, marijuana)“Anything over or under induces anxiety.” In context ↗ Mood or psychiatric effects
- Duloxetine (Cymbalta)“it made me feel on edge all the time so I decided to taper off ... I'm currently tapering off of it as it is making me be more wired and on edge” Mood or psychiatric effects
- “It worsened my baseline” In context ↗ Made symptoms worse
- Ketamine“But I quit because it was giving me too much motivation to do things which I knew I didn't have the capacity for it.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
still crashing from cognitive exertion because of medical/admin tasks
In context ↗ - Anxiety & low mood
Which in turn raises my anxiety and becomes a loop.
In context ↗ - Breathlessness
Am I the only one who gets air hunger and shortness of breath wearing masks?
In context ↗ - Brain fog
I wish I had the cognitive capacity to give you a longer comprehensive response.
In context ↗ - Mast cell (MCAS) & allergies
I do think I have MCAS and histamine intolerance.
In context ↗ - POTS & dysautonomia
dysautonomia-type profile
In context ↗