Housebound with ME/CFS, now somewhat better after years of pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Mar 2022
In their words
- Condition: ME/CFS
which often just doesn't work with my ME
In context ↗ - At worst: Moderate
I'm also housebound and moderate-severe.
In context ↗ - Now: Somewhat better
I'm still not able to do a whole lot, but I do feel much better- still sick, still limited
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Fell ill as a teenager while still in school and became depressed and suicidal; three months of rest after graduating lifted the depression. They credit years of pacing, begun after withdrawing from university, for feeling much better than at their worst. In 2021 they were housebound, describing themselves as 'more like a really bad flu constantly'; by 2022 they were still sick after nearly ten years, and a couple months of injections did nothing.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest · Helped
I did nothing but rest for 3 solid months. The depression lifted immediately
In context ↗ - B12 shots · No change
I was deficient, got the shots for a couple months, noticed no change or improvement though.
In context ↗ - pacing · Helped
Now that I've been pacing for years, I'm still not able to do a whole lot, but I do feel much better
In context ↗ - sleep hygiene and a fixed sleep schedule · Worse
trying to force myself to stick to a schedule that leaves me exhausted and frustrated
In context ↗ - cold showers · No change
I always take cold showers in the summer when it's hot outside, still sick for nearly 10 years though.
In context ↗
Approaches: Pacing · Radical rest
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | fell ill as a teenager; kept going to school full time and became depressed and suicidalI got sick as a teen; I was still going to school full timeIn context ↗ | Mild | |
| after graduating | rested for three solid months; depression lifted and felt physically betterAfter I graduated, I did nothing but rest for 3 solid months. The depression lifted immediatelyIn context ↗ | Mild | Radical rest |
| — | pushed past limits daily until badly depleted and suicidaluntil I was in such a bad place physically that the pain and anguish and fatigue caused me to become suicidal as wellIn context ↗ | Moderate | |
| 2021-08-18 | years of pacing left them better but still sick and limitedNow that I've been pacing for years, I'm still not able to do a whole lot, but I do feel much better- still sick, still limitedIn context ↗ | Moderate | Pacing and the energy envelope |
| 2021-08-18 | crashed for about three weeks after a tilt table testThe resulting crash: about a week of worst symptoms, another week of less severe symptoms, the week after that was still some lingering but after that I was okay.In context ↗ | Severe | |
| 2022-03-15 | still sick nearly ten years inI always take cold showers in the summer when it's hot outside, still sick for nearly 10 years though.In context ↗ | Moderate |
Adverse events
- Vitamin B12“And they hurt like hell for me, which is apparently uncommon.” In context ↗ Side effects
- Sleep hygiene and regular sleep schedule“trying to force myself to stick to a schedule that leaves me exhausted and frustrated.” In context ↗ Made symptoms worse
- “The resulting crash: about a week of worst symptoms, another week of less severe symptoms, the week after that was still some lingering but after that I was okay.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
and was so goddamn depressed I was suicidal
In context ↗ - Sleep problems
I also have a diagnosed sleep disorder, my body makes melatonin from 7am to 4pm and nothing at night.
In context ↗ - Post-exertional malaise
It was only a couple of hours, but when I got home I was completely drained.
In context ↗ - POTS & dysautonomia
while I had tachycardia every time I was upright
In context ↗ - Heart symptoms & palpitations
the rare premature ventricular complexes, and T wave inversion at higher heart rates
In context ↗ - Pain & fibromyalgia
the pain and anguish and fatigue
In context ↗ - Flu-like symptoms
more like a really bad flu constantly
In context ↗
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