ME/CFS relapse with cognitive PEM, somewhat better; propranolol helped POTS-like symptoms
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 18 months
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
Then 20 years later had a relapse that put me more moderate, and I discovered what me/cfs was.
In context ↗ - At worst: Moderate
Then 20 years later had a relapse that put me more moderate
In context ↗ - Now: Somewhat better
I've slowly improved. I got to the point where I could go from walking a couple minutes to ten minutes.
In context ↗
Read from 25 of their posts and comments; links to the 12 this page draws on
Summary
Starling 19270 had ME/CFS as a child from age six and recovered after about two years. Twenty years later a relapse left them more moderate, with cognitive PEM, POTS-like symptoms and mild gastroparesis. Without changing treatments they slowly improved from about 1.5 years into that round, walking ten to fifteen minutes and crashing for a day rather than a week; low-dose propranolol later helped the POTS-like symptoms.
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What they tried
What they credit
Also tried
Their words about each treatment
- CoQ10 · Helped a lot
CoQ10 has been magical for my cognitive PEM — went from only being able to think for thirty minutes to three whole hours without any crashing
In context ↗ - Adderall · Helped
Adderall also helped but caused crashing
In context ↗ - electric bike · Helped
it really has allowed for so much more independence for me it’s been transformational
In context ↗ - compression socks and increasing salt intake · No change
don’t feel any different with the standard first line approaches of compression socks or increasing salt intake
In context ↗ - LDN · Worse
I personally gave up on it after a month because it was too hard on me
In context ↗ - kefir · Helped
I found that it’s helped my gastroparesis
In context ↗ - normal yogurt drinks · No change
I’ve tried normal yogurt drinks as I prefer the taste but it doesn’t do anything
In context ↗ - zero gravity chair · Helped
I get a lot of pain in my legs, and with my zero gravity chair it just completely disappears
In context ↗ - Alpha lipoic acid · Helped
Alpha lipoic acid , which is used for neuropathy, has helped reduce mine a bit
In context ↗ - abdominal binder · Helped
I got an abdominal binder as it helps me not get so fatigued from sitting up
In context ↗ - time · Helped
I've not changed anything the past few months, and I've slowly improved
In context ↗ - propranolol · Helped a lot
I was sub threshold for POTS but given low dose propranolol (5mg) and that’s been huge for me
In context ↗
Approaches: Beta-blockers · Supplements
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 6 (~2003) | childhood ME/CFS, mostly mildpediatric symptoms at age six that I "grew out of"In context ↗ | Mild | |
| around age 8 | grew out of childhood ME/CFS after about two yearsI had me/cfs when I was younger that got better with time too (about 2 years then)In context ↗ | Recovered | Time and spontaneous remission |
| ~2023, 20 years later | relapse that left them more moderateThen 20 years later had a relapse that put me more moderateIn context ↗ | Moderate | |
| March 2025 | slowly improved without changing anything; crashes now last a dayI got to the point where I could go from walking a couple minutes to ten minutesIn context ↗ | Mild | Time and spontaneous remission |
| April 2026 | low-dose propranolol has been huge for POTS-like symptomsI was sub threshold for POTS but given low dose propranolol (5mg) and that's been huge for meIn context ↗ | Mild | Propranolol (Inderal) |
Adverse events
- Amphetamine salts (Adderall)“Adderall also helped but caused crashing ... I crash after for sure since it's hard to pace on it” Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still crash, but it's for a day, not a week
In context ↗ - Brain fog
it works like magic to cut through the fog for me
In context ↗ - POTS & dysautonomia
my pots like symptoms are 30+ heart rate when standing for long periods of time or walking
In context ↗ - Gut problems
I've been having mild gastroparesis (feeling full quickly, food feeling like sitting in stomach, pooping twice a week instead of daily, etc)
In context ↗ - Pain & fibromyalgia
I get a lot of pain in my legs
In context ↗
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