Long COVID
Severe → no benefitIll for 2.5 years
Housebound and declining with long COVID, PEM and migraine, no improvement
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 2.5 years
- Last post
- Nov 2024
In their words
- Condition: Long COVID
develop horrible Long Covid symptoms 4 months ago
In context ↗ - At worst: Severe
I’m housebound right now ... now I basically have to stay reclined most of the day
In context ↗ - Now: No benefit
now after reinfection I became much worse about 5 months ago and continuing to decline
In context ↗ - Began after: COVID
It was about a month after my infection (I never tested positive but I’m 90% sure it was Covid)
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Heron 75956, 24, was mildly ill with long COVID and POTS from a 2022 infection and almost fully recovered, then a 2024 reinfection and six days of exercise left them much worse. By November 2024 they were housebound and still declining, with PEM, migraine and suspected MCAS, able to do little beyond video games and TV. Zyrtec helped a bit; H2 blockers caused bad side effects.
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What they tried
Also tried
Their words about each treatment
- exercising · Helped
one of the things that actually helped my migraines a bit was exercising so I would skateboard and swim almost every day
In context ↗ - Heating pads · Helped
Heating pads help it a little bit
In context ↗ - H2 blockers · Worse
I tried H2 blockers but they gave me pretty bad side effects
In context ↗ - Zyrtec · Helped
I just take Zyrtec every morning which helps a bit
In context ↗
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 |
|---|---|---|
| 2022 | mild long COVID with POTS after first infectionMild in 2022, was almost fully recovered but got much worse in 2024 after reinfectionIn context ↗ | Mild |
| — | brief remission, migraines better controlled but life still limitedI finally got to experience a small glimpse of remission for a bitIn context ↗ | Mild |
| 2024 | crashed after reinfection and six days of daily exerciseAfter 6 days in a row of working out, I woke up dizzy, fatigued, heart palpitations, and all the rest of my LC symptomsIn context ↗ | Severe |
| 2024-11-24 | housebound, staying reclined most of the dayI’m housebound right now and if I don’t try to physically exert myself then I basically just don’t experience PEM at allIn context ↗ | Severe |
Adverse events
- H2 blockers (unspecified)“I tried H2 blockers but they gave me pretty bad side effects” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
even minor exertions like walking 10 minutes will cause horrible PEM for me which feels like I have the flu for a few days
In context ↗ - POTS & dysautonomia
I’ve had POTS symptoms for a few years now after my first infection
In context ↗ - Headaches & migraine
Now I am dealing with more migraines again
In context ↗ - Mast cell (MCAS) & allergies
I’ve also developed more random food allergies the past few years and it seems to be getting worse
In context ↗ - Heart symptoms & palpitations
I woke up dizzy, fatigued, heart palpitations
In context ↗ - Flu-like symptoms
I get a sore throat, feel feverish
In context ↗ - Sleep problems
feel feverish, insomnia, skin burning and neuropathy
In context ↗ - Neuropathy & tingling
skin burning and neuropathy
In context ↗ - Pain & fibromyalgia
My muscles gets super achey
In context ↗ - Anxiety & low mood
At this point I feel like I’m just waiting to die.
In context ↗