Bedbound with ME/CFS, now much better after lymphatic drainage and craniosacral therapy
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
when people finally start getting their lives back from ME/CFS
In context ↗ - At worst: Very severe
10 months ago, I was completely bedbound. Light hurt, noise hurt, breathing felt heavy.
In context ↗ - Now: Much better
I’ve been working remotely 4-5 hours a day, taking my dog on actual long walks ... I'm still pacing myself and I'm super careful about exercise, but the progress is real.
In context ↗ - Began after: glandular fever or EBV
so many of us got triggered by a nasty virus (mononucleosis/EBV in my case)
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Bedbound with light and noise sensitivity and PEM lasting weeks after chores, the poster traces their ME/CFS to EBV. After being bedbound ten months ago, they began daily lymphatic drainage in bed, weekly craniosacral therapy, low-dose naltrexone, CoQ10 and high-dose magnesium, gaining slowly over a couple of months. They now work remotely 4-5 hours a day, walk their dog and camped at a music festival without crashing, though they still pace.
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What they tried
What they credit
Also tried
Their words about each treatment
- Lymph detox / lymphatic drainage · Helped
I started doing gentle gua sha/lymphatic drainage techniques in bed, manual neck releases.
In context ↗ - Craniosacral therapy · Helped
I’ve been doing craniosacral therapy once a week
In context ↗ - low-dose naltrexone (LDN) · Helped
taking low-dose naltrexone (LDN), CoQ10, and high-dose magnesium
In context ↗ - pacing · Not said
I'm still pacing myself and I'm super careful about exercise
In context ↗
Approaches: Alternative therapies · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 10 months ago | completely bedbound, light and noise hurt10 months ago, I was completely bedbound. Light hurt, noise hurt, breathing felt heavy.In context ↗ | Very severe | |
| this past year | brain fog lifted and baseline began crawling upwardThe first couple of months were incredibly slow ... slowly, the brain fog began to lift, and my baseline started crawling upwardIn context ↗ | Severe | Manual lymphatic drainage |
| this past month | working remotely, long dog walks, camped at a music festival without crashingI’ve been working remotely 4-5 hours a day, taking my dog on actual long walks, and last weekend I literally drove three hours to a music festival, camped out, and didn’t crash.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM used to destroy me for weeks after minor chores
In context ↗ - Brain fog
slowly, the brain fog began to lift
In context ↗ - Light & noise sensitivity
Light hurt, noise hurt
In context ↗ - Breathlessness
breathing felt heavy
In context ↗
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