ME/CFS
Moderate → no benefit
Moderate ME/CFS with pain and fatigue, nightly antihistamine inconsistent, no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
since the onset of my chronic illnesses (moderate m.e, EDS, POTS and likely MCAS)
In context ↗ - Now: No benefit
all of my issues are just seemingly getting worse
In context ↗
Summary
A UK-based person with moderate ME/CFS, EDS, POTS and likely MCAS described never being comfortable in bed, with head and neck ache, body pain, fatigue and declining mobility that made rest distressing. Later they reported falling-asleep head pressure, tingling, air hunger and palpitations that doctors could not explain. A nightly antihistamine sometimes helped and sometimes worsened it. Symptoms were worsening, with no improvement reported.
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What they tried
Also tried
sedative medication· Not saidantihistamine· Not said
Their words about each treatment
- sedative medication · Not said
it worsens when im tired/in PEM or in certain hormonal phases or have taken sedative medication
In context ↗ - antihistamine · Not said
i've tried taking an antihistamine every night and that sometimes seems to make it better and sometimes seems to make it worse
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | onset of moderate ME/CFS with EDS, POTS and likely MCASsince the onset of my chronic illnesses (moderate m.e, EDS, POTS and likely MCAS)In context ↗ | Moderate |
| 2025-08-12 | body pain, fatigue and declining mobility; unable to get comfortable in bedall of my issues are just seemingly getting worse and i am so so tired and full of grief and overwhelm from my declining mobilityIn context ↗ | Moderate |
| 2026-01-06 | distressing falling-asleep symptoms; antihistamines inconsistentthe pain and fatigue on top of weird little symptoms like this that i can never seem to pinpoint or help are so dishearteningIn context ↗ | Moderate |
Adverse events
- H1 antihistamines (unspecified)“i’ve tried taking an antihistamine every night and that sometimes seems to make it better and sometimes seems to make it worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBreathlessnessHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
it worsens when im tired/in PEM
In context ↗ - POTS & dysautonomia
ive deducted that its probably dysautonomia / pots related
In context ↗ - Mast cell (MCAS) & allergies
i think i have histamine intolerance
In context ↗ - Sleep problems
i desperately want to rest my body and have a good nights sleep
In context ↗ - Pain & fibromyalgia
the pain, fatigue and irritability in my body
In context ↗ - Headaches & migraine
i feel a dizzy like pressure/compression in my head
In context ↗ - Breathlessness
i get air hungry, like my breathing becomes so fatiguing and strenuous
In context ↗ - Heart symptoms & palpitations
sometimes with heart palps too
In context ↗ - Neuropathy & tingling
my hands and sometimes legs go tingly
In context ↗ - Anxiety & low mood
i was convinced everytime that i was going to die
In context ↗