ME/CFS with PEM and horrific nightmares, somewhat better with Zyrtec and Pepcid
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I get exhausted and then get PEM
In context ↗ - At worst: Moderate
every time I try to go out and do anything beyond a single errand I get exhausted and then get PEM
In context ↗ - Now: Somewhat better
I know I should be grateful because I’m so much better than I used to be
In context ↗
Summary
Pelican 40884 had ME/CFS with PEM for several years, plus mast cell activation that drove horrific nightmares. By late 2025 they were much better than their worst but still got exhausted and crashed after more than one errand, and felt trapped, lonely and sad. Zyrtec and Pepcid before bed calmed the nightmares, and a second attempt at low-dose naltrexone helped after the first had made them worse.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
I tried LDN when I was still quite sick with MCAS, and it amplified my symptoms and made me worse. ... Now it’s really helping me.
In context ↗ - Zyrtec · Helped
I finally calmed my horrific nightmares by taking 5mg of Zyrtec and 10 mg Pepcid before bed. It turns out MAST cell activation was causing the nightmares.
In context ↗ - Pepcid · Helped
I finally calmed my horrific nightmares by taking 5mg of Zyrtec and 10 mg Pepcid before bed. ... I still have some bad dreams but it is SO much better.
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 6 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| — | still quite sick with MCAS; LDN made them worseI tried LDN when I was still quite sick with MCAS, and it amplified my symptoms and made me worse.In context ↗ | Not stated | |
| 2025-12-17 | much better than their worst, but PEM after more than one errandI’m so much better than I used to be ... every time I try to go out and do anything beyond a single errand I get exhausted and then get PEMIn context ↗ | Moderate | |
| 2025-12-30 | second LDN trial now really helping after MCAS brought under controlNow it’s really helping me.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Low-dose naltrexone“I tried LDN when I was still quite sick with MCAS, and it amplified my symptoms and made me worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
every time I try to go out and do anything beyond a single errand I get exhausted and then get PEM
In context ↗ - Mast cell (MCAS) & allergies
It turns out MAST cell activation was causing the nightmares
In context ↗ - Sleep problems
I still have some bad dreams but it is SO much better.
In context ↗ - Anxiety & low mood
I feel so trapped. And lonely. And sad.
In context ↗
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