ME/CFS with POTS and gastroparesis, unable to attend school, somewhat better with pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2019
In their words
- Condition: ME/CFS
due to CFS, gastroparesis and other issues
In context ↗ - At worst: Moderate
my feed is flooded with party pictures, school events and get together s I just can't make it too
In context ↗ - Now: Somewhat better
I am not getting any repercussions atm, and I fell as if my POTS/OI symptoms are a little better
In context ↗
Read from 14 of their posts and comments; links to the 5 this page draws on
Summary
A high-school student with CFS, POTS/OI and gastroparesis, they could not attend school in person and relied on sugar for short bursts of energy. Six months of trainer-led exercise worsened their fatigue though their POTS improved; stopping in June 2019 eased their naps and thinking. Strict pacing from October 2019 helped them do more, and they restarted gentle exercise, walking six minutes on a treadmill without repercussions.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- personal trainer gym program · Worse
Now the PEM was horrendous. I would come home after a workout and nap for 8+ hours ... I did this for 6 months.
In context ↗ - intermittent fasting · No change
I have sort of tried intermittent fasting, I did the 8-16 block method for about 2 months. I didn't notice much weigh loss
In context ↗ - rest · Worse
With all this rest, my POTS/OI symptoms went down hill rapidly, making is hard to move around and concentrate along with other symptoms.
In context ↗ - strictly pacing · Helped
In October this year (4 months after stopping), I tried strictly pacing. This made me feel a bit better and I was able to do more things!
In context ↗ - gradual exercise, increasing up to the point of no PEM · Helped
So far, I am able to walk on a treadmill for 6 minutes at 4km/hour. It took me 3 weeks to increase from 5 minutes to 6. ... I am not getting any repercussions atm, and I fell as if my POTS/OI symptoms are a little better.
In context ↗
Approaches: Pacing
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | became ill and had to stop dramaI use to love doing drama before I go sick.In context ↗ | Not stated | |
| first half of 2019 | fatigue worsened over 6 months of trainer-led exerciseMy fatigue was getting worse, however my POTS/OI symptoms had never been better!In context ↗ | Moderate | Graded rehab and self-made programmes |
| June 2019 | stopped gym exercise; less tired, shorter napsFor the first three months after stopping, I actually started to fell less tired. My naps had reduced to 5+ hours a day and my cognitive symptoms got a little better.In context ↗ | Moderate | |
| October 2019 | strict pacing helped them do moreIn October this year (4 months after stopping), I tried strictly pacing. This made me feel a bit better and I was able to do more things!In context ↗ | Moderate | Pacing and the energy envelope |
| December 2019 | restarted very gentle exercise; POTS a little betterSo far, I am able to walk on a treadmill for 6 minutes at 4km/hour.In context ↗ | Moderate | Graded rehab and self-made programmes |
Adverse events
- Graded rehab and self-made programmes“Now the PEM was horrendous. I would come home after a workout and nap for 8+ hours ... My fatigue was getting worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the PEM was horrendous
In context ↗ - Brain fog
my cognitive symptoms got a little better
In context ↗ - POTS & dysautonomia
the POTS/OI stuff still continued
In context ↗ - Sleep problems
I would come home after a workout and nap for 8+ hours
In context ↗ - Gut problems
due to CFS, gastroparesis and other issues that I struggle to eat a lot
In context ↗ - Anxiety & low mood
I can't do caffeine because it induces anxiety symptoms for me
In context ↗
Ask Miruvor AI
Similar stories
-
Unable to walk around house with long COVID, much better after pacing and antihistamines
A Canadian man with long COVID for about three years was unable to walk around the house for the first two years, with constant migraines, brain fog and PEM. From year three, pacing, rest, stress reduction, H1/H2 antihistamines, hydroxyzine for sleep,…
-
Mostly bedbound and housebound with ME/CFS, pacing and rest helped before a relapse
Valley 16092 has had ME/CFS and fibromyalgia for about 25 years; stress and lifelong health problems led to a crash from 60-hour workweeks. They never became severe but have been mostly bedbound and housebound, and pacing, rest and comorbidity medication…
-
Mostly housebound with ME/CFS, now a little better on Klonopin and low-dose naltrexone
Joseph, 47, in Los Angeles, developed ME/CFS in January 2024, about 18 days after a second COVID infection. He declined from mild to the bad end of moderate over six months, becoming mostly housebound. Klonopin, low-dose naltrexone, midodrine and propranolol…
-
Long COVID brain fog, somewhat better with nicotine patch and naltrexone
Pebble 25278 developed long COVID with brain fog, distorted smell, headaches, nerve pain and trouble sleeping. A quarter of a 10 mg nicotine patch restored much of their speech and thinking, and low-dose naltrexone further raised their cognitive and physical…