ME/CFS
Moderate → no benefitIll for 5 years
ME/CFS: extreme fatigue and pain, now 30-40% of old activity, no benefit from B vitamins
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 5 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
My therapist recently suggested to me that I look into ME/CFS.
In context ↗ - At worst: Moderate
I can do 30-40% of what I used to on a good day.
In context ↗ - Now: No benefit
I can do 30-40% of what I used to on a good day.
In context ↗ - Began after: stress or burnout
Immediately after completing an event in 2021 ... I woke up with numbness and pain in my arms and legs, muscle weakness, problems urinating, weight gain, and extreme, life-changing fatigue.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A trans man who competed in extreme endurance winter sport woke in 2021, right after an event, with numbness, pain, muscle weakness, urinary problems, weight gain and extreme fatigue; since then on a good day he can do 30-40% of his old activity. Five years of specialist tests found no explanation, and treating mild sleep apnoea with a device and six months of B vitamins changed no symptoms. Still undiagnosed, he planned to ask his new doctor about ME/CFS.
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What they tried
Also tried
Their words about each treatment
- a sleep aid device · No change
I was diagnosed with mild sleep apnea and treated (I use a sleep aid device and it works!), but that didn't change any of my existing symptoms.
In context ↗ - a B vitamin mix · No change
I have tried, per doctor's advice, some vitamins and supplements- the main one I recall is a B vitamin mix for about 6 months, with again no change.
In context ↗ - my therapist · Not said
My therapist recently suggested to me that I look into ME/CFS.
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 |
|---|---|---|
| 2021 | woke after an extreme endurance winter sport event with numbness, pain, weakness, urinary problems, weight gain and extreme fatigueImmediately after completing an event in 2021 ... I woke up with numbness and pain in my arms and legs, muscle weakness, problems urinating, weight gain, and extreme, life-changing fatigue.In context ↗ | Moderate |
| February 2026 | still undiagnosed after five years of tests, able to do 30-40% of previous activityI can do 30-40% of what I used to on a good day.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my major crashes after any kind of exertion, mental or physical
In context ↗ - Sleep problems
I will tend to sleep at least 20 hrs the day / days after
In context ↗ - Neuropathy & tingling
I woke up with numbness and pain in my arms and legs
In context ↗ - Muscle weakness
muscle weakness, problems urinating, weight gain, and extreme, life-changing fatigue
In context ↗