Severe and bedbound with ME/CFS, improved after radical rest and TENS, then relapsed
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I have been bedbound for about 6 months.
In context ↗ - At worst: Very severe
I have been bedbound for about 6 months. My mom brings me all my meals and drinks, helps me bathe, does everything for me basically.
In context ↗ - Now: Relapsed
It's been about 2 weeks and I can get out of bed on my own again ... No my symptoms have stayed the same
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
An r/cfs user who was severe and bedbound, with their mother doing everything for them, by January 2025. In August 2024 they could get out of bed on their own again after two weeks of radical rest and a TENS machine for vagus nerve stimulation, but later spent six hours in emergency for dehydration and was held in a psychiatric ward. Low-dose naltrexone at 0.5 mg raised their HRV; at 1 mg stress readings rose and symptoms stayed the same.
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What they tried
Also tried
Their words about each treatment
- That Stuff For Pain (menthol spray) · Helped
I have never used any other product relieve pain the way this stuff does. It can even tackle my 10/10 back pain.
In context ↗ - Pregnancy pillow · Helped
I find it's very helpful to not only make sure there is something between my thighs to support the hip
In context ↗ - Radical rest · Helped
Along with a whole lot of radical rest, I've been seeing some improvement using a tens machine for vagus nerve stimulation.
In context ↗ - TENS machine for vagus nerve stimulation · Helped
It's been about 2 weeks and I can get out of bed on my own again. You have to be careful and go slow.
In context ↗ - Cymbalta · Not said
I'm on Cymbalta and getting brain zaps now.
In context ↗ - LDN · No change
No my symptoms have stayed the same
In context ↗
Approaches: Radical rest · Vagus nerve stimulation
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 |
|---|---|---|---|
| 2024-08-18 | could get out of bed on their own after two weeks of radical rest and TENS for vagus nerve stimulationIt's been about 2 weeks and I can get out of bed on my own again.In context ↗ | Severe | Vagus nerve stimulation |
| 2024-09-06 | six hours in emergency for dehydration, which messed them upI spent 6 hours in Emerg just on Sunday because of dehydration.In context ↗ | Severe | |
| 2025-01-03 | bedbound about six months; mother brings meals and helps them batheI have been bedbound for about 6 months. My mom brings me all my meals and drinks, helps me bathe, does everything for me basically.In context ↗ | Very severe | |
| 2025-12-29 | low-dose naltrexone started; 0.5 mg raised HRV, 1 mg lowered it, symptoms unchangedNo my symptoms have stayed the sameIn context ↗ | Severe | Low-dose naltrexone |
Adverse events
- Duloxetine (Cymbalta)“I'm on Cymbalta and getting brain zaps now.” In context ↗ Side effects
- Low-dose naltrexone“since increasing my dose I've noticed my stress reading on my watch has increased and its lowered my hrv” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I also get the exact same pain but in my left hip.
In context ↗ - Post-exertional malaise
Predictably this did not go well for me and I feel atrocious this morning.
In context ↗ - Sleep problems
I have not slept all night
In context ↗ - Anxiety & low mood
I am waking up on my second full day of being in psych ward cuz I was going to harm myself.
In context ↗
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