ME/CFS
Moderate → no benefitIll for 4 years
Mostly in bed with ME/CFS, no improvement from activity or medication
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 4 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
I am almost positive that I have me/cfs
In context ↗ - At worst: Moderate
I have spent most of those past months at home in bed and only leave the house about once or twice a week and can only handle small outings
In context ↗ - Now: No benefit
my fatigue has been progressively getting worse and has been starting to severely limit my function and quality of life
In context ↗ - Began after: a vaccination
in 2021 after getting the covid vaccine my symptoms got way more severe
In context ↗
Summary
A 17-year-old whose lifelong nervous-system problems worsened sharply after a covid vaccine in 2021 was diagnosed with central pain syndrome/fibromyalgia and POTS and suspected ME/CFS. Keeping active as her doctors advised, plus medication, made her pain and POTS heart rate more manageable, but fatigue kept worsening. By early 2025 she was mostly in bed at home, out only once or twice a week, and over a year behind at school.
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What they tried
Also tried
pacing· Helpedmeds for POTS tachycardia· Helpedlifestyle adjustments· Helpedprednisone· Helpedphysical activity / exercise· Worse
Their words about each treatment
- pacing · Helped
I find that rest doesn’t make me feel better, my baseline is always not great, but it prevents the severe flares
In context ↗ - physical activity / exercise · Worse
pushing through how they’ve been recommending has just been diminishing my quality of life and making me feel horrible
In context ↗ - meds for POTS tachycardia · Helped
I have also gotten my tachycardia from my POTS much more under control with meds and lifestyle adjustments
In context ↗ - prednisone · Helped
She prescribed prednisone for 3 days and it did help, but the headaches are still there
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 |
|---|---|
| — | long-standing nervous-system and autonomic dysfunctionFor as long as I can remember I’ve had central nervous system and autonomic nervous system dysfunctionIn context ↗ |
| 2021 | symptoms much more severe after covid vaccine, leading to diagnosesin 2021 after getting the covid vaccine my symptoms got way more severeIn context ↗ |
| late 2023 | took a full class schedule and crashed, bedbound for two monthsafter about 2 weeks I got so ill that I spent the next two months practically bedboundIn context ↗ |
| early 2025 | severe fatigue decline, mostly in bed at homethe past 3-4 months i have been declining severely in terms of fatigue and am exhausted all the timeIn context ↗ |
Symptoms mentioned
Anxiety & low moodGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
when I push myself even slightly too hard, my health gets really bad for the next while afterwords
In context ↗ - POTS & dysautonomia
I’ve also been diagnosed with POTS
In context ↗ - Pain & fibromyalgia
my pain has become much more manageable, not gone or less severe, but tolerable
In context ↗ - Headaches & migraine
the headaches are still there, but just about 50% less bad/ frequent
In context ↗ - Light & noise sensitivity
Lights and sounds have also been draining my energy and has started causing migraines and daily headaches.
In context ↗ - Anxiety & low mood
driven by mental illness like my anxiety and depression
In context ↗ - Temperature regulation
was shivering uncontrollably and felt freezing even though my temperature was normal
In context ↗ - Gut problems
and was incredibly nauseous
In context ↗