Long COVID with POTS and brain fog, unable to work, somewhat better with pacing
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2024
In their words
- Condition: Long COVID
LC destroyed my life as I knew it
In context ↗ - At worst: Moderate
I have moderate/severe PCC; I'm not wheelchair bound like some unfortunate folks, but I really cannot do anything physical without PEM kicking in, and HARD.
In context ↗ - Now: Somewhat better
LDN wasn't the game changer for me that's it's been for some people, but it did make a difference; I can now at least do well-planned "stuff", although maintaining it for an 8 hour day or even for 5 days per week is still impossible.
In context ↗ - Began after: COVID
I got COVID with two Vax shots in me.
Read from 37 of their posts and comments; links to the 20 this page draws on
Summary
A Canadian physical-rehab worker who trained three times daily caught COVID in December 2021 and developed long COVID with POTS, breathlessness, brain fog and gut problems. Nearly three years on, a flight of stairs or carrying laundry required rests and work was impossible. Low-dose naltrexone, electrolyte tablets, pacing and pool walking or light rowing eased symptoms and widened tolerance somewhat, without bringing recovery.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
It didn't help my PEM, but I feel better across the day, which means I'm not dragging unless I exert myself.
In context ↗ - Nuun hydration tablets · Helped a lot
I've been using Nuun Hydration tablets for a year now, and they've made a huge difference, especially when it comes to physical activity.
In context ↗ - pacing and planned rest · Helped
hydration packs- combined with pacing and planned rest- have given me considerable flexibility in what I'm capable of on a given day
In context ↗ - LC rowing program · Helped
I've had success- and by success I mean no flare ups- with this program
In context ↗ - pool walking and light swimming · Helped
water-based exercise doesn't activate it as badly- my energy stays higher for longer, and my capacity is significantly higher
In context ↗ - sled push · Helped
The actual push is fine for me personally
In context ↗ - very light yoga and core work · Not said
I do some very light yoga and core work a few times per week
In context ↗ - sauna · Helped
chillin' in the sauna (with an consistent supply of ice cold water) and floating in the pool helps me
In context ↗ - therapy · Helped
Therapy is your best friend. If you're able, find a good therapist, and go see them regularly. Mine has been a lifesaver.
In context ↗ - Quetiapine · Helped
Quetiapine helped me
In context ↗ - deep massage · Helped
the only thing that helps is a deep massage and sleeping on a hard floor
In context ↗ - Pfizer vaccinations · Helped
the vaccines have kept me from getting worse and re-aquiring acute COVID
In context ↗ - Omega3 · Helped
while they work a bit at tamping down a flare-up, they don't seem to do much as an everyday therapeutic
In context ↗ - NAH+ · Not said
I take some supplements- NAH+, OMEGA3, etc
In context ↗ - CBD · Not said
I'm only on LDN and CBD, because LDN is all that's been proven to help LC, and CBD is an anti-inflammatory
In context ↗ - meds for anxiety/depression · Not said
I take some meds for anxiety/depression, but I've been on relatively the same dose of those for more than a decade.
In context ↗
Approaches: CBT & mindset · POTS medication · Pacing · Physiotherapy and rehab · Vaccination
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. The first step with a time is 2.3 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| December 2021 | COVID infection, long COVID beginsDecember 2021, so 2.5 years and counting.In context ↗ | Not stated | |
| 2022-2023 | first two years unable to tolerate exerciseFor two years, I didn't feel that my body could tolerate exercise, and attempts at doing so reinforced that thought.In context ↗ | Moderate | |
| early 2024 | three weeks down with a bugI just spent three weeks down with some sort of bug.In context ↗ | Not stated | |
| 2024-04-27 | felt better across the day on LDNI've had improvements in how I felt, but I think I was almost 6 weeks at 4mg before I felt it.In context ↗ | Moderate | Low-dose naltrexone |
| 2024-07-10 | hydration tablets helped physical activityI've been using Nuun Hydration tablets for a year now, and they've made a huge difference, especially when it comes to physical activity.In context ↗ | Moderate | Salt, electrolytes and fluids |
| 2024-08-08 | still legally disabled, worst effects bluntedI've had pretty bad LC/PoTS- bad enough that I'm legally disabled from it- for (almost) three yearsIn context ↗ | Moderate |
Adverse events
- “I've tried to return to heavy sandbag hauling- 100lb sandbag for a single 40m on flat ground- but it caused my headaches to return.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
anything remotely vigorous puts me down for 3-5 days
In context ↗ - Brain fog
My brain has trouble focusing some days. I can't find the words that I want.
In context ↗ - POTS & dysautonomia
The POTS that came with LC means I can't even do yoga without falling over.
In context ↗ - Sleep problems
it comes back occasionally; makes it a bitch to sleep
In context ↗ - Neuropathy & tingling
I had tingling in my legs for the first few months of LC. I still get it occasionally
In context ↗ - Headaches & migraine
attempting to lift ANYTHING heavy from the ground causes headaches and flare-ups
In context ↗ - Breathlessness
have to stop for breath after a flight of stairs
In context ↗ - Heart symptoms & palpitations
I have tachycardia with basic movements
In context ↗ - Gut problems
Weird GI issues.
In context ↗ - Anxiety & low mood
I take some meds for anxiety/depression
In context ↗
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