ME/CFS with relentless fatigue and headaches; LDN and testosterone gave little relief
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 20 months
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
This was the point where the diagnosis of ME/CFS was given.
In context ↗ - At worst: Mild
The fatigue is ALWAYS there, it never goes ... I don’t know how much longer I will be able to work
In context ↗ - Now: No benefit
This has pretty much destroyed my life, and the thought of never feeling ‘well’ again is really depressing.
In context ↗ - Began after: nothing they could name
It all started for me back in April 2024, I can remember it vividly.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Hare 34964 fell ill in April 2024 with a scratching pain in their left eye spreading to their ears and jaw, then relentless fatigue, dizziness and headaches. Tests showed high ferritin and low testosterone; testosterone gel did nothing and they were diagnosed with ME/CFS. Low-dose naltrexone went from 1.5 to 3 to 4.5 mg; they got most relief at 3 mg but are back on 3 mg with little benefit. They still work but fear they cannot keep going.
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What they tried
Their words about each treatment
- testosterone gel · No change
My testosterone came back low, so I was given gel for 6 weeks, this had no affect.
In context ↗ - LDN · Helped
Personally I found that 3 gave me the most relief, so in the last couple of weeks I have been moved from 4.5 back down to 3, but unfortunately as of now I am not really feeling much benefit.
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. The chart starts 5 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| April 2024 | scratching pain began in left eye while working in a datacenterIt all started for me back in April 2024, I can remember it vividly.In context ↗ | Not stated |
| September 2024 | fatigue became debilitating and relentless; saw a doctorOver the next few weeks and months the fatigue started to kick in, and it just got worse and worse and worse, debilitating and relentless.In context ↗ | Mild |
| 2025-12-25 | still working, little benefit from low-dose naltrexonebut unfortunately as of now I am not really feeling much benefitIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
The other constant is the eye pain, mostly my left eye, and it radiates into my ears and sometime my jaw.
In context ↗ - Headaches & migraine
along with headaches
In context ↗ - POTS & dysautonomia
that dizzy, light headed, sickly feeling
In context ↗ - Sleep problems
No amount of sleep would suppress it
In context ↗ - Flu-like symptoms
just a general feeling of being unwell
In context ↗ - Anxiety & low mood
the thought of never feeling ‘well’ again is really depressing
In context ↗