Condition not stated
Mild → no benefitIll for 5 years
Five years of muscle fatigue and heaviness, steady with walking and sulbutiamine
- Condition
- Condition not stated
- At worst
- Mild (working or studying, with limits)
- Ill for
- 5 years
- Last post
- Sep 2026
In their words
- Condition: Condition not stated
I haven’t been officially diagnosed with ME/CFS.
In context ↗ - At worst: Mild
My symptoms aren’t severe enough to leave me bedridden, and I can still work and live a relatively normal life, but they definitely restrict me.
In context ↗ - Now: No benefit
In my case, it has stayed more or less at the same level, with better and worse days.
In context ↗ - Began after: nothing they could name
I’ve been dealing with unexplained fatigue and muscle symptoms for the past few years.
In context ↗ - Says they never had: Post-exertional malaise
I don’t clearly notice that I’m worse the next day after exercise
Summary
Woman in Europe, 33, described five years of unexplained muscle fatigue and heaviness with small efforts, tiredness and tension pain. ME/CFS was never diagnosed; chronic fatigue and fibromyalgia had been considered. She worked from home and kept a relatively normal but restricted life, with symptoms steady over time. Regular walking made walks slightly easier and sulbutiamine helped a little; IV iron eased only breathlessness.
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What they tried
Also tried
Their words about each treatment
- sulbutiamine · Helped
I’ve also been taking sulbutiamine, which seems to give me a little more energy, but it definitely doesn’t solve the underlying problem.
In context ↗ - Mestinon · No change
I didn’t notice any difference at all, I stopped it.
In context ↗ - IV iron · Helped
I stopped getting as out of breath as easily. But unfortunately, it didn’t seem to make any difference to the muscle symptoms at all.
In context ↗ - low-dose escitalopram · Worse
I also tried low-dose escitalopram, around 5–10 mg (for 1 year), but I didn’t notice any improvement in the muscle symptoms. If anything, I just felt sleepier and more tired.
In context ↗ - regular walking / treadmill · Helped
if I manage to walk regularly during the week ... those same walks can become slightly easier ... maybe 10–20% easier
In context ↗ - diet · Not said
With diet I managed to bring my HbA1c down
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 | After |
|---|---|---|---|
| 2021 | unexplained fatigue and muscle symptoms beganI’ve been dealing with unexplained fatigue and muscle symptoms for the past few years.In context ↗ | Mild | |
| 2026-09-18 | regular walking made walks somewhat easierwalking to pick up my son may feel maybe 10–20% easier after I’ve been more consistent with walking for a whileIn context ↗ | Mild | Everyday exercise and activity |
| 2026-09-22 | still working from home, symptoms steady with better and worse daysit has stayed more or less at the same level, with better and worse daysIn context ↗ | Mild |
Adverse events
- Escitalopram (Lexapro)“I also tried low-dose escitalopram, around 5–10 mg (for 1 year), but I didn’t notice any improvement in the muscle symptoms. If anything, I just felt sleepier and more tired.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
a strange muscle fatigue/heaviness that appears while I’m actually using my muscles
In context ↗ - Pain & fibromyalgia
it can start to feel tight and develop that kind of tension pain
In context ↗ - Sleep problems
I know I don’t get enough sleep because of work
In context ↗ - Breathlessness
I stopped getting as out of breath as easily
In context ↗ - Temperature regulation
During colder months my muscles can feel more rigid
In context ↗