Housebound with ME/CFS after COVID, stable and somewhat better with pacing and POTS meds
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 7 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had CFS for 6 years and I got COVID last year.
In context ↗ - Now: Somewhat better
I'm mod-severe now, got really good at pacing. Pretty stable now with medications for pots
In context ↗
Read from 24 of their posts and comments; links to the 15 this page draws on
Summary
Pericat had CFS from about 2017 and was mild until a COVID infection in 2022 left them housebound and couchbound. A second infection treated with Paxlovid raised them to moderate for a few weeks. Better pacing and POTS medication later kept them stable at a self-described mod-severe level; they remained housebound, going out about once a month.
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What they tried
Also tried
Their words about each treatment
- wellbutrin · Not said
I got a two week prescription of wellbutrin to see if it works for me personally
In context ↗ - cannabis · Helped
Cannabis is the only thing that helps with my pain. I take a tiny hit when I hurt and need to get stuff done
In context ↗ - melatonin · Not said
set an alarm for taking melatonin and a muscle relaxer at 9:30pm
In context ↗ - mestinon · Helped
I've been getting ever so slightly stronger since starting the mestinon
In context ↗ - physical therapy exercises · Helped
I can do very basic physical therapy exercises once every few weeks. I was surprised that low frequency still helps but it is
In context ↗ - LDN · Worse
it turns out the LDN is more likely to be causing my twitching
In context ↗ - paxlovid · Helped a lot
Immediately got put on paxlovid and I had way more energy for about a week
In context ↗ - pacing · Helped
I take multiple 20 minute naps a day but I don't usually fall all the way asleep. I actually think it's the best possible tool for pacing
In context ↗ - stopped eating snacks after dinner · Helped
I stopped eating snacks after dinner. First two nights, significantly less sweating. Then, no night sweats!!
In context ↗ - magnesium · Helped
Had to up my magnesium too or I get twitchy
In context ↗ - medications for pots · Helped
Pretty stable now with medications for pots
In context ↗
Approaches: POTS medication · Pacing · Physiotherapy and rehab
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2017 | CFS began, mild for yearsI've had CFS for 6 years and I got COVID last year.In context ↗ | Mild | |
| 2022 | COVID infection left them housebound and couchboundI was mild before covid, then became housebound/couchbound.In context ↗ | Severe | |
| 2022 | slightly stronger on MestinonI've been getting ever so slightly stronger since starting the mestinon.In context ↗ | Severe | Mestinon / pyridostigmine |
| 2023 | Paxlovid during a COVID infection gave a few weeks at moderate2nd infection I got pax and went up to moderate for a few weeks.In context ↗ | Moderate | Paxlovid / nirmatrelvir |
| 2023 | gain from Paxlovid faded after a few weekswent up to moderate for a few weeksIn context ↗ | Severe | |
| 2024-08 | stable at mod-severe with pacing and POTS medicationI'm mod-severe now, got really good at pacing. Pretty stable now with medications for potsIn context ↗ | Moderate | Pacing and the energy envelope |
| 2026-10-07 | accepted their current level, still working on recoveryI've just accepted the level I'm at, and yes I'm still doing everything I can to recoverIn context ↗ | Moderate |
Adverse events
- Mestinon / pyridostigmine“my eyes are so fucking tired, everything is so blurry ... I'm on mestinon and they were really twitchy earlier” In context ↗ Side effects
- Mestinon / pyridostigmine“Yes blurry vision and it got better. Didn't cause me TMJ pain though ... Had to up my magnesium too or I get twitchy” In context ↗ Side effects
- Low-dose naltrexone“I staggered my meds today on accident, and it turns out the LDN is more likely to be causing my twitching.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It's not wasting time, it's a way to let time pass without triggering pem.
In context ↗ - Pain & fibromyalgia
Cannabis is the only thing that helps with my pain.
In context ↗ - Sleep problems
No, I sleep 11-12 hrs a day.
In context ↗ - POTS & dysautonomia
Pretty stable now with medications for pots
In context ↗ - Temperature regulation
First two nights, significantly less sweating. Then, no night sweats!!
In context ↗ - Vision problems
Yes blurry vision and it got better.
In context ↗
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