ME/CFS
Very severe → no benefitIll for 8 years
Housebound then very severe with ME/CFS, no lasting benefit from treatments tried
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 8 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I’m diagnosed since last year with CFS after seeing 20+ specialists and doing plenty analyses.
In context ↗ - At worst: Very severe
I’m VERY severe and this is my one time using my phone in 2 months.
In context ↗ - Now: No benefit
I have gone from moderate to almost very severe because of a plane. It took me 8 months to improve to just severe.
In context ↗ - Began after: nothing they could name
I had signs of illness from before I could remember, but only started researching at 18 years old.
Read from 34 of their posts and comments; links to the 19 this page draws on
Summary
He was a fit student in the US whose fatigue, brain fog and slow cognition worsened from age 16 until he was housebound at 20 and later very severe. Thyroid treatment, tonsillectomy and septoplasty, caffeine and stress reduction gave only partial relief. A plane flight left him almost very severe before he improved to severe; by 2026 he crashed from foods, smells and nearly every medication, while LDN caused adrenaline and low-dose Abilify caused cognitive decline.
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What they tried
Also tried
Their words about each treatment
- Caffeine · Helped
Caffeine is the only thing saving me.
In context ↗ - Tonsillectomy + septoplasty · Helped
Got tonsils removed last year ... no more sore throats. Progression of illness slowed.
In context ↗ - Levo (levothyroxine) · Helped
after being on Levo for for the past 3 months I’ve gotten rid of many symptoms (dry face, dry skin, thirst, chills/flu, etc.)
In context ↗ - Wellbutrin · Helped
It gives me a headache, but I feel more alert and able to think.
In context ↗ - Hot showers · Not said
I take hot showers up to 3x a day when it’s bad
In context ↗ - Xyzal · Helped
I take Xyzal, my doc recommended it. I think it helps, especially good on my eye symptoms.
In context ↗ - Flonase spray · Helped
For allergies Flonaise spray worked best for nose
In context ↗ - Reducing stress and self-care · Helped
embracing that I need to care for myself before impressing others has been helpful. I stopped deteriorating because of it.
In context ↗ - LDN · Worse
Taking micrograms of LDN for a week and was hoping it would make me more feverish. Instead, adrenaline showed up from day 1.
In context ↗ - Salt / sodium · Worse
I’m very severe and as of now cannot tolerate any sodium.
In context ↗ - Pepcid · Worse
I seem somewhat sensitive to Pepcid (dizziness and borderline/possible crashing), but it’s the most tolerable thing I’ve tried.
In context ↗ - Acupuncture · Worse
The first 8 days I felt pain relief. ... On day 9, I woke up on my side, and I felt like my T4-T12 couldn’t hold in their normal alignment.
In context ↗ - LDA · Much worse
I’ve only been taking it for 8 days at a dose so low you guys have never heard of. It’s like my brain doesn’t think the same anymore.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 16 | Overworked for two years in high school; fatigue and brain fog worsenedFast forward to 16, I started working on myself. I was severely overworked for 2 years to catch up to my peers.In context ↗ | Mild | |
| age 18 | Edged on mild: unrefreshing sleep, PEM, dry skin, headachesAt 18, I edged on mild. Unrefreshing sleep, long/random periods of recovery (PEM), dry skin, pain behind eyes, tension headaches, etc.In context ↗ | Mild | |
| age 20 | Deteriorated to housebound while overworking in collegeI deteriorated until I turned 20, and became housebound.In context ↗ | Moderate | |
| 2023-08 | Stabilised after learning about ME/CFS, reducing stress and controlling stimulantsI’m 21 now. I’ve stabilized my health more or less now that I know about this condition. Reducing stress and controlling stimulants put me on the right track.In context ↗ | Moderate | |
| 2025-01 | Crashed after a cross-country plane flightI have gone from moderate to almost very severe because of a plane. It took me 8 months to improve to just severe.In context ↗ | Severe | |
| 2026-02 | Very severe, crashing from foods, smells and meds; one phone use in two monthsFolks, I’m VERY severe and this is my one time using my phone in 2 months.In context ↗ | Very severe | |
| 2026-08 | Acupuncture gave pain relief, then spinal instability; could no longer lie on his backIt’s day 14 and I still have pain relief. But now it feels like the constant muscle spasm my back was in, was actually holding my back together.In context ↗ | Very severe | |
| 2026-10 | Adverse reaction to low-dose Abilify: cognitive decline, panic, feeling poisoned; stoppedI feel beyond poisoned and I’m afraid of permanent side effects.In context ↗ | Very severe | Low-dose Abilify / aripiprazole |
Adverse events
- Bupropion (Wellbutrin)“but gave me tension headaches so I came off” In context ↗ Side effects
- Low-dose naltrexone“Instead, adrenaline showed up from day 1.” In context ↗ Side effects
- Salt, electrolytes and fluids“I’m very severe and as of now cannot tolerate any sodium.” In context ↗ Made symptoms worse
- Famotidine (Pepcid)“I seem somewhat sensitive to Pepcid (dizziness and borderline/possible crashing)” In context ↗ Side effects
- Acupuncture“I could no longer lie on my back.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“It is associated with headaches, nausea, panic, and a general sensation of being poisoned.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
long/random periods of recovery (PEM)
In context ↗ - Brain fog
I’ve had brain fog and slowness my entire life.
In context ↗ - Sleep problems
I’m now severely fatigued, unrefreshing sleep
In context ↗ - Headaches & migraine
headaches, especially behind the eye pressure
In context ↗ - Light & noise sensitivity
Light sensitivity in the sun 7/10 severity
In context ↗ - Temperature regulation
I have shivering with other symptoms, and general heat/cold intolerance.
In context ↗ - Flu-like symptoms
Caught sore throats almost every other month leaving me bedridden for a week each.
In context ↗ - Mast cell (MCAS) & allergies
I crash from almost everything — medications, supplements, smells, and many foods.
In context ↗ - Neuropathy & tingling
On day 11, my legs started tingling
In context ↗ - Gut problems
It is associated with headaches, nausea, panic
In context ↗ - Anxiety & low mood
It is associated with headaches, nausea, panic, and a general sensation of being poisoned.
In context ↗ - Pain & fibromyalgia
The first 8 days I felt pain relief.
In context ↗ - POTS & dysautonomia
lightheadedness during workout
In context ↗