Heavy fatigue and PEM, now somewhat better with low-dose stimulant and pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
As it progressed, I experienced all the MECFS hallmark/classic symptoms. And now 2 years later I got my diagnosis at Stanford.
In context ↗ - At worst: Moderate
I quickly deteriorated to a point where I couldn't workout anymore ... I was feeling exhausted in the mornings -- missing my uni classes
In context ↗ - Now: Somewhat better
Fortunately, I’ve stabilized since then, but it required some major changes.
In context ↗ - Began after: nothing they could name
At 22 I started to feel exhausted for know no decreeable reason.
In context ↗ - Says they never had: POTS & dysautonomia
I don't have POTS.
Read from 39 of their posts and comments; links to the 19 this page draws on
Summary
Gradual onset at age 22 around 2023 with heavy fatigue; exercising five days a week caused a quick deterioration and taught them what PEM felt like, and they were diagnosed at Stanford two years later. LDN, LDA, cromolyn, antihistamines and steroid nasal sprays gave no relief, though phenylephrine spray helped short-term, and CPAP was hard to tolerate. A low-dose stimulant with pacing, less screen time and better sleep gave the biggest quality-of-life gain; screens still wipe them out.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Flonase · No change
I’ve tried Flonase without any benefit.
In context ↗ - Phenylephrine HCl 1% nasal spray · Helped
It’s the only treatment I’ve tried since getting sick that produces an immediate, noticeable effect on my ME symptoms.
In context ↗ - LDN · No change
After 6–8 months on LDN with no noticeable improvement, I’ve decided to discontinue it.
In context ↗ - CPAP · Helped
was diagnosed with sleep apnea ... Cleaning that up has helped.
In context ↗ - nasal rinses · No change
Other treatments like steroid sprays, antihistamines, and rinses haven’t helped at all.
In context ↗ - strong sleeping meds · Helped
the only remedy I've found -- which aren't even close to perfect -- are strong sleeping meds.
In context ↗ - Adderall · Helped
I am giving it one more try since they make me feel slightly more human.
In context ↗ - exercise (5 days a week) · Much worse
I tried to foolishly combat my exhaustion with exercise (5 days a week). And I quickly deteriorated
In context ↗ - LDA · No change
I’m now starting LDA ... I’ve already tried LDA and LDN with absolutely no benefit.
- Zyrtec · No change
I have tried Zyrtec and didn't see any positive changes.
In context ↗ - oral cromolyn · No change
I also tried a mast cell stabilizer (oral cromolyn) with no relief.
In context ↗ - turbinectomy and septoplasty · No change
I had a turbinectomy and septoplasty ... with no relief
In context ↗ - NasalCrom · No change
I've tried antihistamines & nasalcrom with 0 benefit
In context ↗ - cold plunge · Not said
The only thing I can think of that might’ve made it worse is that I took a quick cold plunge last night (like 20 seconds)
In context ↗ - gentle daily walks · No change
I’ve been going on gentle daily walks and haven’t had any negative effects from that.
In context ↗ - Vyvanse · Helped
I’m currently on a low dose of Vyvanse, which has probably had the biggest positive effect on my quality of life so far.
In context ↗ - rest and pacing · Helped
it required some major changes. I had to cut out workouts, reduce screen time significantly, and prioritize rest much more.
In context ↗ - sleep hygiene · Helped
I also focused on improving my sleep hygiene and was diagnosed with sleep apnea
In context ↗ - dietary improvements · Helped
I’ve also made some dietary improvements. Though, for me, the impact there has been relatively minor.
In context ↗ - ice hats · Helped
I also use ice hats, having two so I can rotate them has been really helpful.
In context ↗
Approaches: Pacing · Radical rest · Stimulants
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 |
|---|---|---|
| 2023 | gradual onset of heavy fatigue at age 22At 22 I started to feel exhausted for know no decreeable reason.In context ↗ | Mild |
| 2023 | deteriorated after exercising five days a weekI quickly deteriorated to a point where I couldn't workout anymore.In context ↗ | Moderate |
| 2026-04-16 | low-dose Vyvanse gave the biggest quality-of-life gainI’m currently on a low dose of Vyvanse, which has probably had the biggest positive effect on my quality of life so far.In context ↗ | Mild |
| 2026-09-16 | stabilised, still crashed by screen useboth being productive on a computer and enjoying recreational activities like gaming have become very difficultIn context ↗ | Mild |
Adverse events
- Low-dose naltrexone“But at 6mg I have noticed my fatigue and fever-like symptoms worsening.” In context ↗ Made symptoms worse
- Everyday exercise and activity“I tried to foolishly combat my exhaustion with exercise (5 days a week). And I quickly deteriorated to a point where I couldn't workout anymore.” In context ↗ Made symptoms worse
- “However, the rebounds sucked and I felt more congested with long-term use.” In context ↗ Side effects
- CPAP and sleep apnoea treatment“And even if I do manage to sleep I wake up 1-2 hours later with my mask off. And I feel even groggier in the morning.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
This is when I learned what PEM felt like
In context ↗ - Sleep problems
I almost forget what it's like to feel refreshed in the morning.
In context ↗ - Brain fog
This particularly helps me with information retention and memory retrieval -- two things I struggle with a lot.
In context ↗ - Neuropathy & tingling
The sides of my face also develop an aching, sometimes numb or pins-and-needles sensation.
In context ↗ - Temperature regulation
My face feels like it’s on fire.
In context ↗ - Flu-like symptoms
at 6mg I have noticed my fatigue and fever-like symptoms worsening
In context ↗
Ask Miruvor AI
Similar stories
-
Mild ME/CFS with weeks-long crashes, now somewhat better after CPAP and light management
Crest 34637 had mild ME/CFS, at about 70-80% of normal, for about five to six years before being diagnosed, working eight-hour shifts and crashing for weeks after overexertion. CPAP for moderate sleep apnoea was the first thing that helped, and vitamin D,…
-
Long COVID at 10% of normal function, now much better with rest and less stress
Beacon 40078 got long COVID after a COVID infection and worsened after taking a part-time accounting job, falling to about 10% of normal function at four months. They left the job and slowly improved to about 30% by ten months, later working 5-10 hours a…
-
Unable to work and mostly unable to leave home with ME/CFS, now somewhat better with pacing
After pushing through school and work for about a decade, they became unable to work and could not leave the house most days. They credited strict boundaries around housework, rest and pacing for gradual gains, and said venlafaxine helped depression, sleep…
-
Crushing fatigue and brain fog, now 85% with post-COVID clinic and low-dose naltrexone
A man in his thirties fell ill with COVID-19 in March 2020 and was left with crushing fatigue, brain fog, dysautonomia and exercise intolerance while continuing to work full time. From May 2021 a Mount Sinai post-COVID clinic programme, with low-dose…