ME/CFS
Severe → no benefit
Housebound with severe ME/CFS, no improvement; antihistamines eased some symptoms
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
GI issues are a major aspect of my ME symptoms
In context ↗ - At worst: Severe
currently I am unable to get adequate calories ... currently severe and housebound
In context ↗ - Now: No benefit
when i was the mild side of moderate/moderate side of mild i had to do a 1 day CPET ... too severe to leave the house for it now
Read from 16 of their posts and comments; links to the 12 this page draws on
Summary
The user's ME/CFS began with GI symptoms, weight loss, flushing and night-time adrenaline dumps. When they were mild-to-moderate, a one-day CPET crashed them, and an infection brought home by family plus a spell of trying to work pushed them to severe. By late 2025 they were housebound, too ill for in-person appointments and struggling to get enough calories. Antihistamines eased night-time wiredness and diarrhoea; they also mention an H2 blocker plus second-gen antihistamines.
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What they tried
Also tried
elemental formulas and meal replacement drinks· Helped · wore offmedical diet· Helped · wore offalprazolam· HelpedVisible armband/subscription· Helpedheat· Helpedantihistamines· Helpedh2 blocker· Helpedsleeping whenever my body wanted· HelpedSSRI + SNRI· No changeBC· Much worse
Their words about each treatment
- BC · Much worse
pre ME i trialed 3 different BC and unfortunately they all made me suicidal. hesitant to try again
In context ↗ - SSRI + SNRI · No change
took them years before I developed ME. SSRI + SNRI did nothing for my anxiety but everyone is different.
In context ↗ - elemental formulas and meal replacement drinks · Helped
elemental formulas and meal replacement drinks help reduce the physical load of eating thankfully. ... my RD has me trialing and failing all these elemental formulas
- medical diet · Helped
in the past they have been well managed enough through meds + oral supplemental drinks + medical diet. ... my previous treatment are not helping
In context ↗ - alprazolam · Helped
only as needed in crashes (because benzos are wonderful until theyre not) alprazolam
In context ↗ - Visible armband/subscription · Helped
i liked it i think having a subscription at least for a short period gives u a good idea of what your typical HR is with certain activities
In context ↗ - heat · Helped
i love heat for the pain i have a lot of gadgets that take it from agonizing to just awful
In context ↗ - antihistamines · Helped
antihistamines reduced a lot of what I assumed were unrelated symptoms (the wired feeling at night and diarrhea)
In context ↗ - h2 blocker · Helped
h2 blocker + second gen antihistamines (NOT benadryl)
In context ↗ - sleeping whenever my body wanted · Helped
once those symptoms improved letting myself just sleep whenever my body wanted to really helped. ... my sleep schedule eventually shifted from 7am-4pm to now 12-10am
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. 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 |
|---|---|---|
| onset | ME/CFS began with GI symptoms, weight loss, flushing and diarrhoeayour story sounds a LOT like how my me/cfs started, GI issues, huge weight loss, night time adrenaline dumps, flushing, diarrheaIn context ↗ | Not stated |
| — | one-day CPET crashed them with slurring, stuttering and worse thinkingwhen i was the mild side of moderate/moderate side of mild i had to do a 1 day CPET ... it crashed me pretty good (so much slurring and stuttering and worsened cognitive functioning)In context ↗ | Mild |
| — | rebounded after the CPET crashi did rebound thankfullyIn context ↗ | Mild |
| — | overextended by trying to work while doing bettertrying to work a little when i had been doing better and overextending myselfIn context ↗ | Severe |
| holiday season 2024 | kicked back to severe after a family member infected thema family member getting me sick last holiday season despite my herculean efforts of near 24/7 masking kicked me back to severeIn context ↗ | Severe |
| October 2025 | severely ill and housebound, unable to get enough caloriescurrently severe and houseboundIn context ↗ | Severe |
Adverse events
- “fasting is a PEM trigger for me” In context ↗ Made symptoms worse
- “it crashed me pretty good (so much slurring and stuttering and worsened cognitive functioning)” In context ↗ Made symptoms worse
- Hormonal birth control (unspecified)“pre ME i trialed 3 different BC and unfortunately they all made me suicidal” In context ↗ Suicidal thoughts or attempt
Symptoms mentioned
Brain fogGut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- Brain fog
so much slurring and stuttering and worsened cognitive functioning
In context ↗ - Gut problems
GI issues are a major aspect of my ME symptoms
In context ↗ - Sleep problems
my sleep schedule eventually shifted from 7am-4pm to now 12-10am by slowly letting my body tell me what it needed
In context ↗ - Pain & fibromyalgia
i love heat for the pain i have a lot of gadgets that take it from agonizing to just awful
In context ↗ - POTS & dysautonomia
night time adrenaline dumps
In context ↗ - Mast cell (MCAS) & allergies
GI issues, huge weight loss, night time adrenaline dumps, flushing, diarrhea
In context ↗