ME/CFS
Moderate → no benefitIll for 2 yearsNeeds ongoing treatment
ME/CFS after shingles and trauma, no improvement; graded exercise may have caused a crash
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I developed my ME/CFS from shingles two years ago
In context ↗ - At worst: Moderate
I went downhill and have only plateaud occasionally ... I'm currently on week 6 of a crash
- Now: No benefit
I went downhill and have only plateaud occasionally
In context ↗ - Began after: another virus
I developed my ME/CFS from shingles two years ago
In context ↗
Read from 11 of their posts and comments; links to the 11 this page draws on
Summary
Heron 10983 traces their illness to EBV at age 5, when recurring fevers kept them out of school for months; they eased by their mid-20s. Dysautonomia then left them bedbound, and salt, fluids, compression and slow reconditioning got them back to driving and walks. Shingles and a traumatic period two years ago brought ME/CFS; graded exercise in May 2026 may have triggered a six-week crash. Migraines are now mostly menstrual.
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What they tried
Also tried
salt tablets, electrolytes, fluids and compression· Helpedsalt tablets, electrolytes, fluids and compression· Helpedlow histamine/migraine-friendly diet· Helpedmagnesium· HelpedB2· Helpedgraded exercise / very slow incremental reconditioning· Helpedpizotifen· Helpedvestibular rehab· Helpedmigraine elimination diet· Helpedavoiding triggers and keeping regular sleep hours· Helpedpacing and resting· Not said
Their words about each treatment
- salt tablets, electrolytes, fluids and compression · Helped
I typically have electrolytes right when I wake up and then aim for 2-3L of liquid throughout the day and space my salt tablets in where I need them
In context ↗ - low histamine/migraine-friendly diet · Helped
I have food intolerances and feel much better at baseline/with other conditions if I'm not eating food I react to
In context ↗ - magnesium · Helped
I also take 400mg of B2 and 400mg of magnesium a day for overall migraine.
In context ↗ - graded exercise / very slow incremental reconditioning · Helped
It was the very slow, incremental reconditioning, or graded exercise, that *is* recommended for POTS/dysautonomia.
In context ↗ - pizotifen · Helped
a combination of medication (pizotifen, not available in US unfortunately), vestibular rehab, and the migraine elimination diet helped
In context ↗ - avoiding triggers and keeping regular sleep hours · Helped
Avoiding triggers and keeping regular sleep hours also helps.
In context ↗ - pacing and resting · Not said
What keeps me going with pacing and resting right now, regardless of my deconditioning
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| age 5 | caught EBV; recurring fevers, months out of schoolWhen I was 5 I caught EBV and was out of elementary school for months.In context ↗ |
| mid-20s | fevers eased to a few times a year; part-time work, full-time study, hikesOnce I hit my mid-20s they wore off to only a couple times a year, and I could work part time while studying fulltime, go for hikesIn context ↗ |
| 2020 | dysautonomia onset: bedbound for months, near-constant passing out, heart rate 175 sitting up, no driving for a yearI was mostly bedbound and unable to shower or climb stairs etc without rebound symptoms early in my POTS journey before I had CFSIn context ↗ |
| 18 months after onset | slow reconditioning; back to driving, singing, leaving the house, walksI did get back to being able to drive, sing, leave the house, go for walksIn context ↗ |
| 2 years ago | shingles plus traumatic period; ME/CFS onset, downhill since2 years ago, after a shingles infection and an incredibly stressful/traumatic period of time, I went downhill and have only plateaud occasionallyIn context ↗ |
| May 2026 | restarted graded exercise; crash lasting six or more weeksI tried it again in May of this year, and it may have encouraged this crashIn context ↗ |
| 2026-10-29 | migraines mostly controlled; down to menstrual migraines, ME/CFS limits continueI'm down to mostly menstrual migraines now (triggered by hormones).In context ↗ |
Adverse events
- Graded exercise therapy (GET)“I tried it again in May of this year, and it may have encouraged this crash, since it's *not* good for ME.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
If I overdid it, I would have a delayed 2-4 day flu-fever with severe fatigue
In context ↗ - Flu-like symptoms
a delayed 2-4 day flu-fever with severe fatigue and feeling like my bones were on fire
In context ↗ - POTS & dysautonomia
I developed my version of POTS 4 or 5 years before ME
In context ↗ - Headaches & migraine
chronic migraine - vestibular and classic
In context ↗ - Brain fog
my brain can go for longer with familiar text/story!
In context ↗ - Breathlessness
that left me gasping for breath at rest
In context ↗ - Heart symptoms & palpitations
I'd have a HR of 175 sitting up talking
In context ↗ - Gut problems
I did have undiagnosed POTS and bowel disease
In context ↗