ME/CFS relapse, now somewhat better at handling PEM with creatine and acupressure
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
with the CFS temperature regulation can be squiggly
In context ↗ - At worst: Moderate
I'm hiding in a dark room on a beautiful sunny day
In context ↗ - Now: Somewhat better
I realised that the way I handle PEM now is the best it's been in a couple of years ... I'm hiding in a dark room on a beautiful sunny day
In context ↗
Read from 21 of their posts and comments; links to the 17 this page draws on
Summary
Horizon 94999 was diagnosed with ME/CFS as a teenager and had a rough couple of years before around 14 years of normal life. A relapse later brought the illness back. They credit creatine with helping thinking, an acupressure mat and gels with aches, and a sleep book with their rest and attitude to pacing. They say they now handle PEM better than in a couple of years, though they still rest in a dark room.
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What they tried
What they credit
Also tried
Their words about each treatment
- sunglasses and blue light glasses · Helped
I use sunglasses and blue light glasses. I need one or the other for different situations
In context ↗ - The Sleep Book by Guy Meadows · Helped
it's helped with my attitude towards pacing and it's made a big difference
In context ↗ - Fighting Fatigue book · Helped
Some of the tasks it asks you to think about were helpful.
In context ↗ - Pace Yourself book · Not said
I have started reading pace yourself but haven't got further with it yet.
In context ↗ - weighted blanket · Helped
I love my weighted blanket! I don't sleep under it, rather just rest
In context ↗ - creatine · Helped
I did find creatine helped, along with decreasing mental load in lots of aspects of my life
In context ↗ - acupressure mat · Helped
It helps my mind and muscles relax. I feel a sense of refreshment after using it.
In context ↗ - hayfever tablets · Helped
as well as hayfever tablets and tiger balm.
In context ↗ - Tiger balm · Helped
Tiger balm can be good, but may be best used sparingly to prevent chills.
In context ↗ - eye mask kept in the freezer / ice pack · Helped
I've got an eye mask you can stick in the freezer and that helps.
In context ↗ - Arnica gel · Helped
Arnica gel is nice. ... Arnica is very soothing
- Jointace gel · Helped
Jointace is great
In context ↗ - aloe vera gel · Helped
aloe vera gel is cooling but gentle
In context ↗ - Deep Heat · Not said
I've tried deep heat but don't enjoy it personally.
In context ↗ - Lose It app · Helped
I use Lose It to log what I eat, because if I get enough fibre and protein I generally feel better
In context ↗ - eating fish a couple of times a week · Helped
I've noticed that eating fish a couple of times a week has helped, for example.
In context ↗ - enough fibre and protein · Helped
if I get enough fibre and protein I generally feel better
In context ↗ - visualising walking, climbing, swimming and running · Helped
My mind always feels better for visualizing these things.
In context ↗ - pacing, handling PEM and decreasing mental load · Helped
I realised that the way I handle PEM now is the best it's been in a couple of years, and I can see the difference it's making to me.
In context ↗ - Garmin fitness tracker / HR monitor · Worse
I stopped using mine because once I had enough data, I found I was just getting stressed about it.
In context ↗ - tooth removal · Helped
Short term it sucked for a couple of days, long term it's done me a world of good
In context ↗
Approaches: H1 antihistamines · Pacing · Supplements · Surgery & structural
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. 3 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 |
|---|---|---|
| onset | diagnosed with ME/CFS as a teenagerDiagnosed as a teen and had a rough couple of yearsIn context ↗ | Not stated |
| — | rough couple of years after diagnosishad a rough couple of yearsIn context ↗ | Not stated |
| — | around 14 years of normal lifethen around 14yrs of being able to have a normal lifeIn context ↗ | Recovered |
| 2026-01-09 | unexpected relapse after years of normal lifeand then unexpectedly walloped with a relapseIn context ↗ | Not stated |
| 2026-03-18 | handling PEM better than in years, still resting in a dark roomthe way I handle PEM now is the best it's been in a couple of years ... hiding in a dark room on a beautiful sunny dayIn context ↗ | Moderate |
Adverse events
- Symptom-tracking apps and wearables (Visible)“I stopped using mine because once I had enough data, I found I was just getting stressed about it.” In context ↗ Mood or psychiatric effects
- Tooth extraction“I had just one tooth removed. Short term it sucked for a couple of days” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the way I handle PEM now is the best it's been in a couple of years
In context ↗ - Light & noise sensitivity
I use sunglasses and blue light glasses. I need one or the other for different situations
In context ↗ - Pain & fibromyalgia
it takes the aches and pains away, even if it's just for a bit
In context ↗ - Temperature regulation
normally need a few blankets, hot drink, hot water bottle and a few hours before I start to feel a normal temperature again
In context ↗ - Sleep problems
I read it to help me sleep better
In context ↗ - Brain fog
I did find creatine helped, along with decreasing mental load in lots of aspects of my life
In context ↗
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