Constant flu-ish symptoms and head pain with ME/CFS, somewhat better off caffeine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 18 years
- Last post
- Jan 2022
In their words
- Condition: ME/CFS
I think my M.E started about 16 years ago with a big, horrible flu/glandular fever virus.
In context ↗ - At worst: Moderate
I try only plan "big" things every other week AT MOST ... when it happens I'll be forced to rest up for 4-6 days anyway
In context ↗ - Now: Somewhat better
I started feeling better when I gave up caffeine actually!
In context ↗ - Began after: glandular fever or EBV
I think my M.E started about 16 years ago with a big, horrible flu/glandular fever virus
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
A Reddit user ill with ME/CFS since about 2000, after a severe flu or glandular fever virus followed by recurring long viral illnesses that merged into constant flu-ish symptoms and head pain. They credit giving up caffeine with sleeping and feeling better and fewer panic attacks when out. They pace carefully, resting four to six days after big outings, and later switched from citalopram to duloxetine, which they think is causing a dry, sore throat.
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What they tried
What they credit
Also tried
Their words about each treatment
- fish oil omega 3,6&9 · No change
I don't really think I notice much difference though but I'm going to continue until I've finished the tub
In context ↗ - Agnus Castus · Helped a lot
I take Agnus Castus for PMT though and that has worked wonders on reducing all my severe symptoms.
In context ↗ - flu jab · No change
The couple of days after my jab I feel a little bit extra crappy but it's nothing much.
In context ↗ - decongestants · Helped
I've had almost constant pains in my head a bit like a sinus issue, decongestants help, but it never fully develops.
In context ↗ - giving up caffeine · Helped
I started feeling better when I gave up caffeine actually! ... I started feeling and sleeping better and my blood sugar control was better
In context ↗ - careful pacing · Helped
I solve the issue with careful pacing: I try only plan "big" things every other week AT MOST.
In context ↗ - Citalopram · Not said
I've recently switched to Duloxetine from Citalopram
In context ↗ - Duloxetine · Worse
I've recently switched to Duloxetine from Citalopram and I think that's what's been causing a terrible dry throat. ... the back of my throat feels scratchy, sore and dry, like I'm swallowing sand paper
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 |
|---|---|---|
| about 2000 | ME/CFS began with a big flu/glandular fever virusI think my M.E started about 16 years ago with a big, horrible flu/glandular fever virus. I took months to recover.In context ↗ | Moderate |
| October 2016 | long viral illnesses merged into a constant slightly flu-ish statethe bad periods of illness got longer, and the 'well' periods got shorter so it so started merging together and I was never fully wellIn context ↗ | Moderate |
| January 2019 | gave up caffeine and felt and slept betterI started feeling better when I gave up caffeine actually!In context ↗ | Mild |
| January 2022 | switched from citalopram to duloxetine, dry sore throatI've recently switched to Duloxetine from Citalopram and I think that's what's been causing a terrible dry throat.In context ↗ | Moderate |
Adverse events
- Flu vaccine“The couple of days after my jab I feel a little bit extra crappy but it's nothing much.” In context ↗ Side effects
- Citalopram (Celexa), Duloxetine (Cymbalta)“the back of my throat feels scratchy, sore and dry, like I'm swallowing sand paper.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the PEM which takes longer to develop and is longer lasting but more low key
In context ↗ - Sleep problems
Trouble is sometimes I physically can't stay awake
In context ↗ - Headaches & migraine
I've had almost constant pains in my head a bit like a sinus issue
In context ↗ - Pain & fibromyalgia
I also, always awake in very bad pain
In context ↗ - Anxiety & low mood
I linked my panic attacks and anxiety when I was out of the house to the caffeine too
In context ↗ - Flu-like symptoms
I'm constantly in a state of slightly flu-ish
In context ↗
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