ME/CFS
Mild → no benefitNeeds ongoing treatment
ME/CFS pain, fatigue and month-long flares; not housebound, pacing keeps life manageable
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- many years
- Last post
- May 2023
In their words
- Condition: ME/CFS
I still haven't really accepted my CFS diagnosis
In context ↗ - At worst: Mild
up until recently I helped take care of my elder mother, we've got a house I have to work on fairly often because we can't afford professionals for everything
In context ↗ - Now: No benefit
I've lived this way for a long time now, so I've had time to make my peace with that I'll likely never get "all better."
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Canyon 81633 was diagnosed with ME/CFS many years before 2022, with waxing pain and fatigue, occasional month-long flares, and short crashes after overdoing things. About two years before writing she had a stroke-like episode, spent days in hospital and used a cane until at-home physiotherapy helped; one leg stayed weaker. By September 2022 she said pacing kept life manageable and she was not housebound.
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What they tried
Also tried
Their words about each treatment
- Stoicism · Helped
getting turned on to Stoicism helped me *enormously* with letting go of what I call The Shoulds
In context ↗ - pacing myself · Helped
Usually if I pace myself it's not too terribly bad.
In context ↗ - at-home PT · Helped
had at-home PT to get some strength back so I don't need a cane fulltime
In context ↗ - HRT · Helped
HRT curbed most of the hot flashes and night sweats.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| — | diagnosed with CFS many years before 2022I was lucky and was dxd with CFS many years ago without searching for a dxIn context ↗ |
| about 2 years before Feb 2022 | stroke-like attack, days in hospital, needed a caneAbout 2 years ago I had what acted exactly like a stroke, but imaging and tests showed it wasn't a stroke.In context ↗ |
| 2022-02 | back to her normal after at-home physiotherapyI'm back to my normal, with pain and fatigue waxing and waningIn context ↗ |
| 2022-09 | pacing keeps flares manageable, few bad month-long flare upsUsually if I pace myself it's not too terribly bad.In context ↗ |
Symptoms mentioned
Flu-like symptomsHeadaches & migraineMuscle weaknessPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Like I made an involved meal yesterday because I really love cooking, so of course gravity will be too strong for a few days
In context ↗ - Flu-like symptoms
if I do too much, the lymphs in my neck swell up and I feel like I'm coming down with something for a day or two
In context ↗ - Pain & fibromyalgia
pain and fatigue waxing and waning
In context ↗ - Headaches & migraine
hobbies I can do while resting (or getting over a migraine)
In context ↗ - Muscle weakness
my leg that didn't work at all for a few days is still weaker than the other leg
In context ↗ - Temperature regulation
HRT curbed most of the hot flashes and night sweats
In context ↗