ME/CFS
Severe → somewhat better
Months of infections, severe headaches and fatigue with ME/CFS, now somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
Afraid I have ME/CFS
In context ↗ - At worst: Severe
I've been in bed for a few weeks ... the only time i really leave the house is to go to the hospital or doctor
In context ↗ - Now: Somewhat better
I can sleep for 8-10 hours at around 5am, wake up at 2 and be tired all day, but as soon as the sun sets I feel fine.
In context ↗ - Began after: a bacterial or tick-borne infection
For months I've been dealing with on and off uti and kidney infections for 5 months
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A 19-year-old woman described months of on-and-off UTI and kidney infections and a sudden severe headache with light and sound sensitivity, nausea, weight loss, sore pain in her thighs and lower back, fatigue and breathlessness. She feared ME/CFS. She tried Xyzal and a low-histamine diet, though symptoms had gone two days before the antihistamine. By April she slept 8-10 hours and felt drained by day, alert only at night.
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What they tried
Also tried
Their words about each treatment
- migraine meds · No change
they tried giving me migraine meds and even morphine nothing has helped.
In context ↗ - low histamine diet · Not said
I was on a low histamine diet for about 2 weeks prior though.
In context ↗ - Xyzal · Not said
She has me on Xyzal for now but the odd thing is you'd think my symptoms went away because of the Xyzal
In context ↗ - pushing through / short walk · No change
I try to push through and actually went on a short walk to try and wake myself up today but it didn't seem to help much at all.
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. The chart starts 2 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 28 December 2025 | sudden worst-ever headache; in bed for weeks, leaving home only for hospital or doctoron the 28th I got a horrible headache out of nowhere. Like the worst ive had in my life.In context ↗ | Severe |
| 12 January 2026 | crashed after helping put up a shelfAll i did was help my sister put up a shelf and then put things on said shelf and now my head hurts again and i feel so winded and tired.In context ↗ | Moderate |
| 17 April 2026 | sleep reversed, tired all day and alert only at night; could still walk and do chores at nightI can sleep for 8-10 hours at around 5am, wake up at 2 and be tired all day, but as soon as the sun sets I feel fine.In context ↗ | Mild |
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Headaches & migraine
on the 28th I got a horrible headache out of nowhere. Like the worst ive had in my life.
In context ↗ - Light & noise sensitivity
i am sensitive to Bright light and loud sounds
In context ↗ - Pain & fibromyalgia
ive had horrible sore pain on and off in my thighs, neck and lower back
In context ↗ - Sleep problems
My sleep has been so off since this headache ive been falling asleep at 4am waking up at almost 3pm
In context ↗ - Breathlessness
When i exert myself i get short of breath
In context ↗ - Temperature regulation
my temperature raises to 99⁰
In context ↗ - Gut problems
I've lost 10 pounds in 3 weeks because i get so nauseous when I eat
In context ↗ - Post-exertional malaise
All i did was help my sister put up a shelf and then put things on said shelf and now my head hurts again and i feel so winded and tired.
In context ↗