ME/CFS managing at home with rest, now a bit better with Mestinon and B12 injections
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I still suffer from CFS, but after having extensive testing for B12 I'm doing a bit better.
In context ↗ - Now: Somewhat better
I still suffer from CFS, but after having extensive testing for B12 I'm doing a bit better.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Birch 59604 had undiagnosed ME/CFS when her children were born and still has CFS, managing at home with rest and small tasks. Mestinon gave more energy and improved gastric motility, though the benefit faded and returned after a two-week break. An iron infusion for low ferritin coincided with recovery from restless legs, and B12 testing found pernicious anaemia, with daily injections leaving her a bit better.
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What they tried
What they credit
Also tried
Their words about each treatment
- Mestinon · Helped
Mestinon has been helpful for me too. It stopped working for a while. I stopped taking it for about 2 weeks and when I started back up it works again.
In context ↗ - B12 injections · Helped
I was diagnosed with Pernicious Anemia and have been doing better with daily injections.
In context ↗ - sleep when the baby sleeps · Helped
The two things that got me through the beginning were strictly following the "sleep when the baby sleeps" standard advice
In context ↗ - drinking more water · Helped
Drinking more water than I ever thought I needed.
In context ↗ - simple meals with lots of greens · Helped
Eating simple meals with lots of greens. (No more than 5 ingredients.)
In context ↗ - long-term sleep course · Not said
I've been taking a long-term sleep course and learning some amazing things about sleep.
In context ↗ - small 3-5 minute increments · Helped
I try to do one thing on days I can in small 3-5 minute increments.
In context ↗
Approaches: POTS medication · Radical rest · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| when my kids were born | undiagnosed ME/CFSI had undiagnosed ME/CSF when my kids were bornIn context ↗ | Not stated | |
| — | recovery from restless legs after iron infusionnever attached my recovery to the iron infusion I had when my ferritin was lowIn context ↗ | Not stated | |
| 2025-09-26 | more energy and better gastric motility on MestinonBesides giving me more energy (no long walks for me, just around the house stuff.) it has also improved my gastric motility.In context ↗ | Moderate | Mestinon / pyridostigmine |
| 2026-09-07 | doing better after pernicious anaemia diagnosis and B12 injectionsI was diagnosed with Pernicious Anemia and have been doing better with daily injectionsIn context ↗ | Moderate | Vitamin B12 |
| 2026-10-02 | still has CFS, a bit better after B12 testingI still suffer from CFS, but after having extensive testing for B12 I'm doing a bit better.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I try to be nice to myself about having a crash over something that others would judge.
In context ↗ - Gut problems
it has also improved my gastric motility. It's nice to lessen that discomfort.
In context ↗ - Pain & fibromyalgia
low iron can cause leg pain and be part of the restless leg issue. ... I used to have this
In context ↗
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