ME/CFS with daily tripping and diarrhoea, somewhat better on trazodone or amitriptyline
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
viral infection that left me with ME
In context ↗ - Now: Somewhat better
It passed. Now I trip when I'm tired.
In context ↗ - Began after: another virus
muscle twitches that I developed after the virus that caused ME
In context ↗
Read from 15 of their posts and comments; links to the 14 this page draws on
Summary
Tide 50204 developed ME after a viral infection, with daily tripping at their worst (now only when tired), muscle twitches, years of hunger pain and ongoing diarrhoea, and later MCAS, sinus infections, SIBO, IBS and IBD. A 30-second cold shower left them in bed for the rest of the day. Ketotifen helped their gut until it irritated their stomach, trazodone or amitriptyline really helped, and clonazepam stopped painful head jerking. Covid reinfections left them with more severe PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- cold shower · Worse
I had to spend the rest of the day in bed. I think the stress of the cold water on my body for so long resulted in my crash.
In context ↗ - SSRIs · No change
SSRIs were suggested as a treatment for M. E. I tried a couple they made no difference.
In context ↗ - Baclofen · Helped
I'm on Baclofen for muscle twitches that I developed after the virus that caused ME. Without it I would be awake all night due to twitching.
In context ↗ - Ketotifen · Helped
Ketotifen helped my gut no end. Then inflammation from another source stopped me from being able to take it without causing stomach pain.
In context ↗ - Cyproheptadine · Not said
Cyproheptadine is an antihistamine. It is also used fir those underweight. I tried it. I couldn't stop eating.
In context ↗ - osmotic laxatives · Worse
Osmotic laxatives seem to release histamine giving me urgency.
In context ↗ - Lactulose · Worse
Lactulose isnt recommended and gives me wet f@rts.
In context ↗ - aloe vera · Worse
I know in the past it gave me diarrhoea but so did everthing else.
In context ↗ - all the injections · Not said
i took all the injections and still caught covid 3 times.
In context ↗ - drug that was meant to reduce the infection · Not said
I also had the drug that was meant to reduce the infection.
In context ↗ - tricyclics · Not said
Now I'm on tricyclics and have pelvic pain my stools have to be soft.
In context ↗ - Trazodone or amitriptyline · Helped
Trazodone or amitriptyline really helped.
In context ↗ - clonazepam · Helped
0.25mg clonazepam every 2nd night has stopped this.
In context ↗
Approaches: Other antidepressants · Tricyclic antidepressants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME after a viral infectionmuscle twitches that I developed after the virus that caused MEIn context ↗ | Not stated | |
| — | at worst tripped every day; in bed the rest of the day after a cold showerAt my worst I tripped every day.In context ↗ | Moderate | |
| 2023-07-11 | crashed after a 30-second cold showerI had to spend the rest of the day in bed.In context ↗ | Moderate | Cryotherapy and cold exposure |
| 2024-03-06 | tripping mostly passed, only when tiredIt passed. Now I trip when I'm tired.In context ↗ | Mild | |
| 2025-03-11 | painful head jerking now rare on clonazepamI still get this but rarely now.In context ↗ | Mild | Clonazepam (Klonopin) |
Adverse events
- Cryotherapy and cold exposure“I had to spend the rest of the day in bed. I think the stress of the cold water on my body for so long resulted in my crash.” In context ↗ Made symptoms worse
- Ketotifen (Zaditen)“It worked well then it started to irritate my gut so i had to stop.” In context ↗ Gut side effects
- Cyproheptadine (Periactin)“Cyproheptadine is an antihistamine. It is also used fir those underweight. I tried it. I couldn't stop eating.” In context ↗ Side effects
- “Osmotic laxatives seem to release histamine giving me urgency.” In context ↗ Gut side effects
- Lactulose“Lactulose isnt recommended and gives me wet f@rts.” In context ↗ Gut side effects
- Aloe vera“I know in the past it gave me diarrhoea but so did everthing else.” In context ↗ Gut side effects
- Clonazepam (Klonopin)“Sadly both give me diarrhoea. I have IBS and IBD.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The last infecions leaving me with a much severer PEM.
In context ↗ - Muscle weakness
I cannot wear heavy boots as my legs tire.
In context ↗ - Gut problems
I was also having lots of diarrhoea
In context ↗ - Mast cell (MCAS) & allergies
I know I have MCAS
In context ↗ - Sleep problems
Without it I would be awake all night due to twitching.
In context ↗ - Pain & fibromyalgia
Now I'm on tricyclics and have pelvic pain
In context ↗ - Headaches & migraine
an increasing pain somewhere in my head
In context ↗
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