ME/CFS
Mild → no benefitIll for 4 years
From 20 km walks to barely around the block with ME/CFS, no improvement
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 4 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
after getting sick with what potentially could be mecfs
In context ↗ - At worst: Mild
am more on the light side of things though
In context ↗ - Now: No benefit
Today I'm lying in bed with a hot water bottle feeling like my brain is on fire
In context ↗ - Began after: a bacterial or tick-borne infection
It all started 4 years ago after a massive bladder infection when I did get a catheter with apparently a resistent germ on top of it in the ER
Read from 12 of their posts and comments; links to the 7 this page draws on
Summary
They fell ill four years ago after a bladder infection, a catheter and six months of antibiotics including Ciprofloxacin, going from 20 km dog walks to barely around the block. The cause, ME/CFS or fluoroquinolone toxicity, is unclear. They pace and play low-intensity games, crashing after overdoing it, with ongoing headaches and muscle and joint pain. Ibuprofen helps only headaches; doctors call it depression, which a therapist ruled out.
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What they tried
Also tried
cannabis (vaped weed)· Helpedibuprofen· HelpedNovalgin· Worsetop surgery and hysterectomy· Not saidT· Not saidpacing· Not said
Their words about each treatment
- top surgery and hysterectomy · Not said
Top surgery was a 1 week stay here in Germany back then (it was combined surgery with the hysterectomy done as well).
In context ↗ - T · Not said
I feel no different the days I forget to take my T
In context ↗ - Novalgin · Worse
suddenly started to be allergic to Novalgin, ended up in the ER for half a day
In context ↗ - cannabis (vaped weed) · Helped
It helps with the ADHD symptoms a bit after the initial high is over and kind of puts me into a fairly calm and comfy mood.
In context ↗ - pacing · Not said
in the begining without pacing- I barely could walk him around the block anymore
In context ↗ - ibuprofen · Helped
I use ibuprofen usually, but it just helps with the headaches but has ZERO effect on the muscle/ joint pain etc.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 4 years ago (about July 2022) | Illness began after a bladder infection, a catheter with a resistant germ and six months of antibiotics; could barely walk the dog around the blockWent from walking my dog for 20km/ day to considering to rehome him because -in the begining without pacing- I barely could walk him around the block anymore.In context ↗ |
| 2026-07-19 | crashed two days after playing a video game for a couple of hoursToday I'm lying in bed with a hot water bottle feeling like my brain is on fire, ice cold feet, etc.In context ↗ |
| 2026-08-21 | still limited by headaches and muscle and joint pain; ibuprofen only helps the headachesI use ibuprofen usually, but it just helps with the headaches but has ZERO effect on the muscle/ joint pain etc.In context ↗ |
Adverse events
- Metamizole (Novalgin)“suddenly started to be allergic to Novalgin, ended up in the ER for half a day...had prior experience with the medication and never had any issues with it.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Headaches & migraineMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Sometimes I overdo it and then have to pay the price
In context ↗ - Headaches & migraine
it just helps with the headaches
In context ↗ - Pain & fibromyalgia
has ZERO effect on the muscle/ joint pain etc.
In context ↗ - Mast cell (MCAS) & allergies
suddenly started to be allergic to Novalgin, ended up in the ER for half a day
In context ↗