ME/CFS
Severe → no benefit
Severe ME/CFS, now mostly resting and crashing; Mirena IUD and therapy, symptoms unchanged
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
This year I've been having a relapse and a difficult period with cfs
In context ↗ - At worst: Severe
When I was severe I made the decision to cut it.
In context ↗ - Now: No benefit
My ME symptoms are the same, but now I'm able to cope with them better and have a better quality of life.
In context ↗
Read from 12 of their posts and comments; links to the 7 this page draws on
Summary
Gull 35074 describes a past severe period of ME/CFS when she was too weak to climb stairs or wash her hair, and a severe flare-up from March 2026 that she has suffered from since, with a relapse this year. She now lives alone, mostly resting, and crashes after outings such as food shopping. A Mirena IUD stopped her periods and greatly reduced hormonal anxiety and depression, and therapy helped her pace and cope, though her ME symptoms were unchanged.
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What they tried
Also tried
Their words about each treatment
- caffeine · Helped
For years caffeine had been my way of regulating my energy levels
In context ↗ - Mirena IUD · Helped
Most of the old symptoms like anxiety, depression, crying, emotional outbursts, irritability and (hormonal) fatigue have reduced significantly.
In context ↗ - full time resting · Helped
I've not had a crash, but I think it's because I've been full time resting, doing absolutely nothing demanding.
In context ↗ - Ibuprofen · Not said
I've been having to take a lot of Ibuprofen for inflammation regularly and it causes me to bruise easily.
In context ↗ - pain killers · Not said
I had to take pain killers today, so even though I felt relatively okay in the afternoon, I knew it was just the medication masking.
In context ↗ - therapy · No change
My ME symptoms are the same, but now I'm able to cope with them better and have a better quality of life.
In context ↗ - pacing · Helped
I learned to organize my life in a way that doesn't push me over my limits.
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 |
|---|---|---|
| — | past severe period: too weak for stairs, could not wash or brush her hairWhen I was severe I made the decision to cut it. It takes way too much energy to keep my hands up for that long to wash or brush it.In context ↗ | Severe |
| March 2026 | severe flare-up of ME/CFS lasting monthsI got into a severe flare up in March 2026 and have been suffering from it ever since.In context ↗ | Severe |
| 2026-09-03 | one day without a crash after food shopping and eating, then back to bedI went food shopping and when I got back home, I didn't crash!In context ↗ | Moderate |
| 2026-10-18 | crashed after food shopping the previous dayNow in the evening I've been crashing hard from yesterday's shoppingIn context ↗ | Moderate |
| 2026-10-21 | ME symptoms unchanged but coping better and better quality of life after therapyMy ME symptoms are the same, but now I'm able to cope with them better and have a better quality of life.In context ↗ | Moderate |
Adverse events
- Caffeine and coffee“I had nausea, anxiety, head aches, pains, dizziness and all sorts of symptoms” In context ↗ Withdrawal problems
- Caffeine and coffee“At times I went to a really dark place and had thoughs of not wanting to continue life anymore.” In context ↗ Suicidal thoughts or attempt
- Ibuprofen (Advil, Nurofen, Motrin)“I've been having to take a lot of Ibuprofen for inflammation regularly and it causes me to bruise easily.” In context ↗ Blood count problems
- IUD (hormonal or copper)“The past 20 I avoided using any hormonal products because they had such a big and negative effect on my physical and mental health.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Now in the evening I've been crashing hard from yesterday's shopping
In context ↗ - Anxiety & low mood
Most of the old symptoms like anxiety, depression, crying, emotional outbursts, irritability and (hormonal) fatigue have reduced significantly.
In context ↗ - Headaches & migraine
I had nausea, anxiety, head aches, pains, dizziness
In context ↗ - Pain & fibromyalgia
I had to take pain killers today
In context ↗