Condition not stated
No benefitIll for 17.5 years
15-20 years of pain, gut, dysautonomia and brain fog, no better off medication
- Condition
- Condition not stated
- At worst
- Not stated
- Ill for
- 17.5 years
- Last post
- Aug 2025
In their words
- Condition: Condition not stated
I think I may have been mistaken about his conclusion being cfs and his exclusion diagnosis was actually fibromyalgia
In context ↗ - Now: No benefit
I've not been on any medications for about 18 months and the dry mouth, eyes, skin etc persist
In context ↗ - Began after: nothing they could name
I've had 15-20 years of symptoms (41m)
In context ↗
Summary
A 41-year-old man has had 15-20 years of chronic neck pain, an inflammatory skin condition, IBS-like gut symptoms, dysautonomia, temperature dysregulation, headaches, brain fog, gland soreness and dry eyes and mouth. A rheumatologist landed on ME/CFS or fibromyalgia by exclusion. Ketotifen and famotidine were stopped because he believes they triggered bladder symptoms that never fully resolved; he has taken no medication for about 18 months.
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What they tried
Also tried
Their words about each treatment
- regular maintenance steroids · Helped
The steroid ointment has for the most part prevented this but the chronic soreness has continued unrelenting.
In context ↗ - ketotifen · Worse
I was started on ketotifen + famotidine but had to stop as I think this is what led to my bladder involvement which has never fully recovered
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| onset | onset of long-standing symptomsI've had 15-20 years of symptoms (41m)In context ↗ |
| — | bladder symptoms after ketotifen and famotidine that never recoveredI was started on ketotifen + famotidine but had to stop as I think this is what led to my bladder involvement which has never fully recoveredIn context ↗ |
| 2025-08-03 | off all medication, still symptomatic, seeking private rheumatologyI've not been on any medications for about 18 months and the dry mouth, eyes, skin etc persistIn context ↗ |
Adverse events
- Ketotifen (Zaditen)“I was started on ketotifen + famotidine but had to stop as I think this is what led to my bladder involvement which has never fully recovered” In context ↗ Side effects
- Famotidine (Pepcid)“I was started on ketotifen + famotidine but had to stop as I think this is what led to my bladder involvement which has never fully recovered” In context ↗ Side effects
- “the cystoscopy to find the cause found nothing but gave me another UTI!” In context ↗ Other
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaTemperature regulation
Their words about their symptoms
- Brain fog
Chronic fatigue and brain fog.
In context ↗ - POTS & dysautonomia
light headedness / tachycardia on standing, dizzy spells
In context ↗ - Gut problems
I also have IBS-like symptoms (colonoscopy clear)
In context ↗ - Pain & fibromyalgia
Chronic neck pain/strain
In context ↗ - Headaches & migraine
get tmj and headaches that can last days
In context ↗ - Temperature regulation
General temperature dysregulation
In context ↗ - Mast cell (MCAS) & allergies
heat and exercise triggering cholinergic urticaria
In context ↗ - Breathlessness
sometimes making a full breath more difficult
In context ↗ - Flu-like symptoms
Glands behind my jaw and ears are very often hard and sore to the touch
In context ↗