ME/CFS with daytime sleeping, much better after stressor removal and somatic therapy
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 21 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I’ve had CFS for 21 years.
In context ↗ - At worst: Severe
When not taking it I get brain & what I call body fog. I sleep more hours than I’m awake & I’m for the most part bedridden.
In context ↗ - Now: Much better
I’ve experienced a gradual improvement ever since I divorced my very malicious narcissistic spouse 8 years ago.
In context ↗ - Began after: injury or surgery
It came on after I was treated for cancer.
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
She has had CFS for 21 years, coming on after cancer treatment, and has taken a prescribed stimulant for about 15 years to stop her sleeping through the day. She improved gradually after a divorce removed a major stressor, with stress now her main crash trigger. Her dog's death brought a two-month crash; she still crashes if too active but recovers within days, not weeks. Somatic Experience Therapy techniques gave some success.
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What they tried
Also tried
Their words about each treatment
- pouring cool water over my head · Helped
I’ve also found that I can be outside in the heat longer when I pour cool water over my head.
In context ↗ - generic Adderal · Helped
It’s not the answer to CFS I want but it prevents me from sleeping during the day. ... One does tend to acclimate to the dosage and it’s been necessary for me to increase the dose twice to get the same results.
In context ↗ - lifestyle change / stress reduction (divorce) · Helped a lot
Stress reduction has given me the best improvements. ... I’ve experienced a gradual improvement ever since I divorced my very malicious narcissistic spouse 8 years ago.
- alcohol · Helped
There was a period of time that alcohol worked for me.
In context ↗ - Somatic Experience Therapy techniques · Helped
I’ve been trying some Somatic Experience Therapy techniques, trying to regulate the nervous system with some success. It’s difficult for me to stick with a routine.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The first step with a time is 13 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 2 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 |
|---|---|---|
| ~2005 | CFS began after cancer treatmentI’ve had CFS for 21 years. It came on after I was treated for cancer.In context ↗ | Not stated |
| before she started a stimulant | unmedicated: fog, sleeping more than awake, mostly bedriddenI sleep more hours than I’m awake & I’m for the most part bedridden.In context ↗ | Severe |
| ~2018 (8 years before 2026) | gradual improvement after divorce removed a major stressorI’ve experienced a gradual improvement ever since I divorced my very malicious narcissistic spouse 8 years ago.In context ↗ | Mild |
| 2026 | two-month crash after her dog of 18 years diedI’ve just come out of a 2 month episode after my beloved dog of 18 yrs died.In context ↗ | Not stated |
| 2026-06-03 | still crashes if too active but recovers in daysI’m still affected if I’m too active, but I now recover within days, not weeks.In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“I did start out using the extended release but found it made it more difficult for me to get to sleep at night.” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Temperature regulation
I also get too hot but don’t have that burning sensation.
In context ↗ - Post-exertional malaise
I’m still affected if I’m too active, but I now recover within days, not weeks.
In context ↗ - Brain fog
When not taking it I get brain & what I call body fog.
In context ↗ - Sleep problems
I sleep more hours than I’m awake
In context ↗