ME/CFS
Moderate → no benefitIll for 6 yearsNeeds ongoing treatment
Housebound with ME/CFS in 2021, no better after graded exercise and CBT
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 6 years
- Last post
- Jan 2025
In their words
- Condition: ME/CFS
Mild to moderate ME/CFS, how bad are your crashes?
In context ↗ - At worst: Moderate
Before all this I was moderate. I could walk the dog in my wheelchair every day and do a light chore
In context ↗ - Now: No benefit
I've had a really bad end of 2024 and beginning of 2025. ... Before all this I was moderate.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Described mild to moderate ME/CFS while still being diagnosed, with PEM, brain fog, flu-like symptoms and POTS, becoming housebound for about two months in 2021. Graded exercise with CBT briefly helped before cardio above their aerobic heart rate made them worse. Before late 2024 they were moderate, walking the dog in a wheelchair, until a quetiapine dose increase triggered panic attacks and suicidal feelings; in January 2025 they were tapering lorazepam and unsure of their baseline.
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What they tried
Also tried
Their words about each treatment
- CBT · Worse
Reversing the damage CBT has done is a bitch.
In context ↗ - GET · Worse
it initially actually made me better, before we crossed a certain line and it started making me worse.
In context ↗ - Maffetone method · Worse
I crashed myself a few times by doing just a bit more than was wise.
In context ↗ - small exercise regime every morning · Helped
a small exercise regime every morning that didn't crash me to keep my POTS in check
In context ↗ - quetiapine · Worse
this slowly got worse until I figured out it was the upping the dose of my sleep medication (quetiapine) that was doing it
In context ↗ - lorazepam · Not said
The doctor came and immediately put me on lorazepam.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | mild ME/CFS, pushed through symptoms and workedI used to ignore all my symptoms really hard and push through just about everything.In context ↗ | Mild |
| 2019 | CBT with graded exercise initially made them betterI had GET along with my CBT two years ago and it initially actually made me betterIn context ↗ | Mild |
| 2019 | graded exercise worsened once cardio went above aerobic heart rate; Maffetone running caused crashesIt started making me worse when they got me to do cardio above my aerobic heartrate.In context ↗ | Mild |
| May 2021 | housebound after rolling PEMI have been housebound for about 2 months nowIn context ↗ | Moderate |
| 2024 | moderate: dog walks in wheelchair, light chore, small morning exercise regimeBefore all this I was moderate. I could walk the dog in my wheelchair every day and do a light choreIn context ↗ | Moderate |
| January 2025 | panic attacks from quetiapine dose increase, became suicidal, lorazepam startedon the second of January I had such a severe panic/fear attack that I became suicidalIn context ↗ | Moderate |
| 2025-01-18 | tapering lorazepam slowly, doing very little, unsure of baselineI've also been doing very little because I have no idea where my baseline is nowIn context ↗ | Moderate |
Adverse events
- CBT and psychotherapy“Reversing the damage CBT has done is a bitch.” In context ↗ Other
- Graded exercise therapy (GET)“I had GET along with my CBT two years ago and it initially actually made me better, before we crossed a certain line and it started making me worse.” In context ↗ Made symptoms worse
- Quetiapine (Seroquel)“Last Christmas I began having panic attacks in the early hours of the morning, this slowly got worse until I figured out it was the upping the dose of my sleep medication (quetiapine) that was doing it.” In context ↗ Mood or psychiatric effects
- Quetiapine (Seroquel)“on the second of January I had such a severe panic/fear attack that I became suicidal” In context ↗ Suicidal thoughts or attempt
- Lorazepam (Ativan)“the panic attacks never really stopped and with the tapering, became stronger” In context ↗ Withdrawal problems
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
My PEM feels like a flu with mild joint and muscle aches
In context ↗ - Brain fog
sore throat, brain fog
In context ↗ - POTS & dysautonomia
I have been diagnosed with POTS
In context ↗ - Heart symptoms & palpitations
nausea, dizziness, palpitations
In context ↗ - Flu-like symptoms
My PEM feels like a flu ... sore throat
In context ↗ - Pain & fibromyalgia
mild joint and muscle aches
In context ↗ - Temperature regulation
cold one moment and warm/sweaty the next
In context ↗ - Sleep problems
There were quite a few days in there with very little sleep
In context ↗ - Anxiety & low mood
I began having panic attacks in the early hours of the morning
In context ↗ - Tinnitus
Big crashes usually present with new symptoms for me (tinnitus, joint pain, eye pain, jaw pain)
In context ↗