ME/CFS
Moderate → no benefit
Largely housebound with ME/CFS and chronic pain, with no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
I have chronic pain along with me/cfs.
In context ↗ - At worst: Moderate
Now I have a hard time even leaving the house ... I’ll rest on the couch
- Now: No benefit
Now I have a hard time even leaving the house ... I do one small thing and then am in bed for a week.
Read from 19 of their posts and comments; links to the 16 this page draws on
Summary
They have ME/CFS with chronic pain and are largely housebound, sleeping until early afternoon and needing rest in bed until mid-afternoon. They cut their library job to a couple of afternoons a week and then quit in July 2025 as leaving the house became hard. One small task could leave them in bed for a week, and physical therapy and pushing past their limits made them worse. They described no recovery; a chewable supplement gave only slight help.
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What they tried
Also tried
medication for anxiety· HelpedB12 chewables· Helpedbreathing exercises· Helpedpacing and resting· HelpedTENS· Helpedwriting gratitudes· Helpedquitting caffeine· No changehrt· No changephysical therapy· Worsetherapist· Not saidmigraine hat· Not said
Their words about each treatment
- medication for anxiety · Helped
I have terrible anxiety and take medication for it but that doesn’t completely solve it
In context ↗ - physical therapy · Worse
And then it makes us worse until we can barely do anything. That’s my story as well
In context ↗ - B12 chewables · Helped
It helps a little. I want to bump it to 1000mcg and see if it helps more
In context ↗ - therapist · Not said
I see a therapist for the mental side of this
In context ↗ - migraine hat · Not said
I have one of those migraine hats. I had a different one that was better
In context ↗ - quitting caffeine · No change
I stopped it as I became more sensitive and it was hurting night time sleep
In context ↗ - hrt · No change
I thought it was perimenopause. But I’m on some hrt and it hasn’t changed.
In context ↗ - breathing exercises · Helped
I do a little bit of breathing exercises daily and they help but haven’t solved it.
In context ↗ - pacing and resting · Helped
if I accept and don’t try to change I’m happier. I’ll get depressed and more PEM when I try to change
In context ↗ - TENS · Helped
Tens helps me sometimes. I often use it in the evening and it can distract from the pain.
In context ↗ - writing gratitudes · Helped
I write gratitudes in my phone. It helps to just say three things I’m grateful for that day.
In context ↗
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 |
|---|---|---|
| — | onset during her library careerI was a librarian before my illness forced me to quitIn context ↗ | Mild |
| 2025 (before July) | cut to a couple of afternoons a week and struggled to manage even thatI reduced hours to afternoons and only a couple a week but I struggled to make it even to that.In context ↗ | Moderate |
| July 2025 | left her job, with added depressionI left my job in July. It was hard and left me with some added depressionIn context ↗ | Moderate |
| 2025-12-13 | one small task left her in bed for a weekSo I do one small thing and then am in bed for a week.In context ↗ | Moderate |
| 2026-05-02 | nocturnal schedule, in bed until mid-afternoon, up in the eveningOften stay in bed resting and scrolling until around 4.In context ↗ | Moderate |
Adverse events
- “I stopped it as I became more sensitive and it was hurting night time sleep” In context ↗ Insomnia from treatment
- Physical therapy / physiotherapy“we follow along with PT and doing things doctors think will make us better. And then it makes us worse until we can barely do anything.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodHeadaches & migraineNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I’ll get depressed and more PEM when I try to change
In context ↗ - Anxiety & low mood
I have terrible anxiety and take medication for it
In context ↗ - Pain & fibromyalgia
I have chronic pain along with me/cfs
In context ↗ - Sleep problems
it was hurting night time sleep (already enough of a problem!)
In context ↗ - Temperature regulation
I used to always be cold. Now sometimes I’m even colder than usual and sometimes sweating.
In context ↗ - Neuropathy & tingling
Mainly joint pain but I also have some nerve pain.
In context ↗ - Headaches & migraine
I have one of those migraine hats.
In context ↗