ME/CFS
Moderate → no benefitIll for 14 yearsNeeds ongoing treatment
Severe end of moderate ME/CFS, no improvement with pacing and duloxetine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 14 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
My local CFS clinic is amazing.
In context ↗ - At worst: Moderate
I’m the severe end of moderate so I’ve had a couple of plays on e-bikes
In context ↗ - Now: No benefit
I definitely cycled more when I was at the milder end it’s so much easier than walking.
In context ↗
Read from 15 of their posts and comments; links to the 10 this page draws on
Summary
Glade 47266 was diagnosed with CFS in 2010 and in 2024 described herself as at the severe end of moderate and drove only to medical appointments. She paced with a CFS clinic physiotherapist and psychologist and gave up caffeine because it hid warning signs of PEM. Duloxetine helped her mood and nerve pain without physical worsening; a treatment was amazing at first, but the second time, the attack that led her to have it triggered severe PEM.
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What they tried
Also tried
prednisolone· Helped a lotpacing (with a physio)· Helpedchange in medication· HelpedDuloxetine· Helpedthe sea· Helpede-bikes· HelpedCaffeine and coffee· Worsegiving up caffeine (using decaf instead)· Not saidtherapy· Not said
Their words about each treatment
- giving up caffeine (using decaf instead) · Not said
Part of this meant I had to give up caffeine because it masks my early warning signs of needing to slow down making me more likely to trigger PEM.
In context ↗ - therapy · Not said
I’ve also had A Lot of therapy am medicated for MH and was diagnosed in 2010.
In context ↗ - pacing (with a physio) · Helped
it took the physio basically telling me to stop everything and rest more to get a handle on what pace is sustainable for me.
In context ↗ - change in medication · Helped
after a change in medication masked a load of them and left me very confused (it’s working really well on what it’s for though so I’m sticking with it
In context ↗ - prednisolone · Helped a lot
First time I had it it was amazing. Second time I had it the attack that meant I got it triggered severe PEM and I missed out on the fun.
In context ↗ - Duloxetine · Helped
Duloxetine has helped my mental health and nerve pain in a way that didn’t make my physical health worse though.
In context ↗ - the sea · Helped
When I was well enough to get to the sea it helped my pain and my everything.
In context ↗ - e-bikes · Helped
I’ve had a couple of plays on e-bikes and they’ve really helped but I’ve not had the opportunity to try them in more sensible places.
In context ↗ - Caffeine and coffee · Worse
I use caffeine to help me focus knowing it will mean I trigger PEM and potentially put me back on bed rest for a few days/weeks.
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2010 | CFS, diagnosed 2010; earlier years at the milder end and still cyclingI definitely cycled more when I was at the milder end it’s so much easier than walking.In context ↗ | Mild |
| 2023-11-03 | a medication change masked their early warning signs and left them confusedI’m currently having to relearn my early tells after a change in medication masked a load of them and left me very confusedIn context ↗ | Moderate |
| — | severe PEM after an asthma attackthe attack that meant I got it triggered severe PEM and I missed out on the funIn context ↗ | Severe |
| 2024-06-28 | at the severe end of moderateI’m the severe end of moderateIn context ↗ | Moderate |
Adverse events
- Caffeine and coffee“I use caffeine to help me focus knowing it will mean I trigger PEM and potentially put me back on bed rest for a few days/weeks.” In context ↗ Made symptoms worse
- “a change in medication masked a load of them and left me very confused ... my body is back to. “Fine we’ll burn up (or shiver) until you stop what you are thinking about doing and go to bed.“” In context ↗ Side effects
- “I experience massive mood swings and rage when my meds are wrong” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsLight & noise sensitivityNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Opening with I have PEM
In context ↗ - Flu-like symptoms
If I push too hard I know I will get swollen glands, fever, the works.
In context ↗ - Pain & fibromyalgia
When I was well enough to get to the sea it helped my pain
In context ↗ - Neuropathy & tingling
Duloxetine has helped my mental health and nerve pain
In context ↗ - Anxiety & low mood
I’ve also had A Lot of therapy am medicated for MH
In context ↗ - Brain fog
after a change in medication masked a load of them and left me very confused
In context ↗ - Light & noise sensitivity
when I’m hugely over stimulated
In context ↗ - Temperature regulation
we’ll burn up (or shiver) until you stop what you are thinking about doing and go to bed
In context ↗