Mild to moderate ME/CFS with PEM, somewhat better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 10 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
Seven years later still got ME/CFS
In context ↗ - At worst: Mild
I still struggle to identify as disabled since I am more mild/moderate.
In context ↗ - Now: Somewhat better
I am not cured but I can do so much more physically.
In context ↗ - Began after: stress or burnout
I actually ended up with CFS due to an extreme diet and exercise regime
Read from 12 of their posts and comments; links to the 9 this page draws on
Summary
Their ME/CFS began around 2015, after an extreme diet and heavy exercise regime followed on medical advice; by 2025 it had lasted about ten years. They rated themselves mild to moderate, with orthostatic symptoms and PEM triggered by physical activity, and could not exercise for a decade. Low-dose naltrexone was transformative; not a cure, but by 2025 they could do reformer pilates twice a week, wrecked the next day.
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What they tried
Also tried
Their words about each treatment
- Zoely (birth control pill) · Helped
I have found Zoely works for me ... birth control has actually helped smooth that out
In context ↗ - hydolyte dissolvable tablets · Helped
I always have hydolyte dissolvable tablets with me when I travel and it does help
In context ↗ - sleep apnoa treatment · Helped
I had sleep apnoa and CFS -- sleep apnoa treatment helped a bit but I still have PEM
In context ↗ - Reducing physical activity · Helped
For me, physical activity is the big trigger ... Reducing that has reduced my fatigue (but also messed me up in other ways unfortunately)
In context ↗ - low dose naltrexone · Helped a lot
LDN was transformative for me. I am not cured but I can do so much more physically.
In context ↗ - reformer pilates · Not said
I've been able to go to reformer pilates twice a week this year. I am wrecked the day after
In context ↗ - Hormonal birth control (unspecified) · Not said
try a few as some made me depressed abd affected my mental health badly
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| onset | ME/CFS began during an extreme low-carb diet and heavy exercise on medical adviceI actually ended up with CFS due to an extreme diet and exercise regime and keeping on going based on medical adviceIn context ↗ | Mild | |
| 2025-03-30 | low-dose naltrexone let them do much more physicallyLDN was transformative for me. I am not cured but I can do so much more physically.In context ↗ | Mild | Low-dose naltrexone |
| 2025-11-30 | after ten years unable to exercise, doing reformer pilates twice a weekwith LDN my illness level has stabilised enough that I've been able to go to reformer pilates twice a week this yearIn context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Hormonal birth control (unspecified)“try a few as some made me depressed abd affected my mental health badly” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have PEM
In context ↗ - POTS & dysautonomia
When I started to get bad orthostatic symptoms and extreme fatigue
In context ↗
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