ME/CFS
No benefit
Doing terribly with ME/CFS and struggling to pace, no help from B12 injections
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
agreed to refer me to a fatigue clinic for some help with management
In context ↗ - Now: No benefit
I've been doing pretty terribly lately and have been avoiding doctor's appointments since April.
In context ↗
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
A UK Reddit user in r/cfs described doing terribly in August 2025 and struggling to pace. B12 injections for over a year brought no change, though the injections became more painful. They were on amitriptyline 30 mg and echoed another commenter's experience. A Visible wearable helped them track resting heart rate and HRV. Sun gave them headaches/migraines and made their whole body hurt, while hot weather made them very tired; by 2026 they had thumb and wrist pain that x-rays and nerve tests did not explain.
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What they tried
Also tried
Their words about each treatment
- Visible · Helped a lot
I've been using Visible and it has been working incredibly well, I don't know how I managed without it.
In context ↗ - B12 injections · No change
I've been getting them for over a year (first every other day for 2 weeks, and now every 12 weeks) and didn't notice any difference to be honest
In context ↗ - sun · Worse
The sun gives me headaches/migraines and makes my whole body hurt. Hot weather makes me suuuuuuper tired.
In context ↗ - amitriptyline · Helped
I'm on 30mg at the moment, but the exact same experience otherwise!
In context ↗ - pacing · Not said
I am very disconnected from my body as a whole, so pacing is not really going well lol
In context ↗ - compression gloves and wrist braces · Helped
I found compression gloves and wrist braces mildly helpful
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2025-08-26 | doing terribly, avoided doctors since April, pacing not going wellI've been doing pretty terribly lately and have been avoiding doctor's appointments since April.In context ↗ |
| 2026-09-22 | ongoing thumb and wrist pain, imaging and nerve tests normalI do get lots of pain in my thumbs especially, and hand/wrists in general.In context ↗ |
Adverse events
- Vitamin B12“all I get is arm pain for week afterwards” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
The sun gives me headaches/migraines and makes my whole body hurt.
In context ↗ - Pain & fibromyalgia
I do get lots of pain in my thumbs especially, and hand/wrists in general.
In context ↗ - Neuropathy & tingling
other times I get a very sharp nerve pain when moving my wrist
In context ↗ - Temperature regulation
Hot weather makes me suuuuuuper tired.
In context ↗