ME/CFS
Moderate → no benefitIll for 12 years
ME/CFS crashes and near-constant fried feeling; exercise and elimination diet no help
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 12 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
Honestly I'm worried. My PEM seemingly has evolved into feeling "fried" alongside many new issues in the past months.
In context ↗ - At worst: Moderate
PEM going out to stores, even short activities leave me extremely drained, brain foggy, and feeling awful
In context ↗ - Now: No benefit
it's like the fried feeling just almost never goes away, it just radically worsens sometime
In context ↗ - Began after: nothing they could name
I'm pretty sure this has been happening since my teens
In context ↗
Summary
Hill 12393 has had low energy and fatigue since their teens. In their twenties short outings left them crashing for the rest of the day, and exercising consistently plus an elimination diet brought no improvement. By 2025 the post-exertional crashes had worsened into a near-constant 'fried' feeling with low-grade fevers, headaches, severe brain fog, burning muscles, pain and incontinence, and they were at a loss about what to do.
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What they tried
Also tried
Their words about each treatment
- eye drops · No change
gritty-feeling eyes that don't feel better after using eye drops
In context ↗ - elimination diet · No change
At the moment I'm doing an elimination diet ... I've seen 0 improvements
In context ↗ - working out more · No change
trying to workout more ... I've seen 0 improvements
In context ↗ - antihistamines · No change
my nose feels very strained like I've just been punched in it but antihistamines don't help
In context ↗ - inhalers · No change
Poor lung capacity and other breathing issues, inhalers don't help
In context ↗ - IV fluids · Helped a lot
IV fluids once made me feel much better, mind actually felt alive
In context ↗ - B1 · Helped
Recently taking B1 + magnesium seems to help slightly with nighttime episodes but not 100% sure
In context ↗ - eating less · Helped
What Has Helped (Even Briefly) ... Eating less
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 |
|---|---|---|
| teens | Low energy and fatigue from childhood/teensI'm pretty sure this has been happening since my teensIn context ↗ | Mild |
| 2023-2024 (past 1-2 years) | PEM turned into a constant fried feeling with new fevers, headaches, pain, burning muscles and severe brain fogMy PEM seemingly has evolved into feeling "fried" alongside many new issues in the past months.In context ↗ | Moderate |
| 2025-11-27 | Still worsening; at a loss, plans to force a doctor visit for blood testsSevere brain fog - can barely think or follow conversations in real-timeIn context ↗ | Moderate |
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
PEM going out to stores, even short activities leave me extremely drained, brain foggy, and feeling awful
In context ↗ - Brain fog
Severe brain fog - can barely think or follow conversations in real-time
In context ↗ - Sleep problems
Poor sleep quality - almost never wake up feeling refreshed
In context ↗ - Gut problems
Digestive issues - constipation (only go about 3x/week), poor motility, lifelong gut problems
In context ↗ - Headaches & migraine
Headache most days, most hours, and they feel much nastier than before
In context ↗ - Flu-like symptoms
Episodes where I feel extremely sick/unwell with flu-like malaise
In context ↗ - Temperature regulation
Weird temperature regulation - cold hands/warm palms, cold toes/burning feet
In context ↗ - Muscle weakness
I felt like I'm struggling to lift stuff or on the verge of collapsing
In context ↗ - Pain & fibromyalgia
now my body most of the time feels fried and in a lot of pain
In context ↗ - Breathlessness
Poor lung capacity and other breathing issues, inhalers don't help
In context ↗