ME/CFS relapse with head rush, headaches, now nearly back to normal after moving country
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 years
- Last post
- Jul 2024
In their words
- At worst: Severe
I couldn't sit up in bed without getting a head rush, nevermind having to have a wall to grab when I stood up
In context ↗ - Now: Near normal
I'm at a point where no one who just met me would guess I'm sick, and maybe I will never be normal, but I definitely have a life I never dreamed possible
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Sparrow 40664 wrote they had had CFS for 20 years, with a 2022 relapse that left them unable to sit up in bed without a head rush and constant headaches. They got a little better, then moved to another country and got a lot better, reaching a life they never dreamed possible though they may never be normal. A severe respiratory illness in May 2024 lasted six weeks; doxycycline eased their fatigue within a day.
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What they tried
What they credit
Their words about each treatment
- L Carnitine · Not said
love the L Carnitine and ALA and Resveratrol
In context ↗ - moved to another country · Helped a lot
I got a little better, moved to another country, got a lot better
In context ↗ - giving it time · Helped
I was there a few times, and then I got a little better
In context ↗ - Doxycycline · Helped
Went back after a week of getting worse and the fatigue unrelenting, and got Doxycycline
In context ↗
Approaches: Mould avoidance
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. The chart starts 18.1 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2004 | CFS began | Not stated | |
| 2022-07-19 | relapse after a stomach bug; too dizzy to sit up in bed, constant headachesI couldn't sit up in bed without getting a head rush, nevermind having to have a wall to grab when I stood upIn context ↗ | Severe | |
| 2024 | got a little better, moved to another country, got a lot betterI got a little better, moved to another country, got a lot betterIn context ↗ | Near normal | Relocation and environmental change |
| May 2024 | severe respiratory illness with unrelenting fatigueI got super sick in May and they said it wasn't Covid ... the fatigue unrelentingIn context ↗ | Not stated | |
| 2024-07-08 | recovered from six-week illness after doxycyclineWithin 1 day fatigue eased up and started feeling betterIn context ↗ | Near normal | Doxycycline (Vibramycin) |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I couldn't sit up in bed without getting a head rush
In context ↗ - Headaches & migraine
constant headaches from my blood vessels struggling to keep blood in my head
In context ↗ - Brain fog
long time CFS patient, brain fog and I just woke up
In context ↗ - Pain & fibromyalgia
Fibromyalgia Survivor
In context ↗ - Anxiety & low mood
Depression, IC, Anxiety
In context ↗
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