Bedridden with long COVID three years; somewhat better after resting and cutting meds
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Aug 2023
In their words
- At worst: Severe
i was pretty much bed ridden til this year.
In context ↗ - Now: Somewhat better
i'm still house bound. everything takes turns. if i can breath ok then my feet hurt to much to walk.
In context ↗ - Began after: COVID
i got covid at the beginning of the pandemic. april 2020.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Dusk 78042 got COVID in April 2020 and was largely bedridden for three years; a May 2021 reinfection left chronic cough and severe breathlessness. After cutting all but her rescue inhaler and resting, she improved from early 2023, staying out of bed all day and doing light housework on good days. By August 2023 she was still housebound with nerve pain, poor taste and smell, and breathing trouble.
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What they tried
What they credit
Also tried
Their words about each treatment
- Latuda · Not said
My fun times began with stopping the use of Latuda. I was 2 years into that withdrawal process
In context ↗ - patch on the good eye · Helped
A patch on the good eye for 5-10 minutes a day help with the lazy eye.
In context ↗ - sea sickness medicine · Helped
They gave me sea sickness medicine for the dizziness. That worked within an hour.
In context ↗ - Benadryl · Not said
I also take a Benadryl everyday in case there’s any inner ear fluid going on. I don’t know if it’s helping but I’m dizzy a lot less now.
In context ↗ - steroids · Worse
the more meds they gave me the worse i felt. i finally decided to try not taking all the steroids and asthma meds.i finally started to feel better.
In context ↗ - asthma meds · Worse
the more meds they gave me for my lungs the worse they got so i took a chance and cut out all but my rescue inhaler. i felt better (over all) immediately.
In context ↗ - rescue inhaler · Not said
i took a chance and cut out all but my rescue inhaler.
In context ↗ - expectrant · Not said
inhaler, expectrant and allergy pills. and rest. lots of it.
In context ↗ - rest · Helped
i started getting better when i just left myself alone. just resting, staying not stressed.
In context ↗ - COVID vaccination as treatment · Worse
1 week after he 2nd one i woke up and couldn t breath. went to the hospital3 times that week each time theycouldnt find anything wrong.
In context ↗
Approaches: Radical rest
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 13 months after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| April 2020 | COVID-19 onseti got covid at the beginning of the pandemic. april 2020.In context ↗ | Not stated | |
| 2020-2022 | bedridden for yearsi was pretty much bed ridden til this year.In context ↗ | Severe | |
| mid-2021 | reinfection left chronic cough and breathlessnessthe second bout of covid took out my lungs. chronic cough and pretty severe shortness of breath.In context ↗ | Severe | |
| early 2023 | able to stay out of bed all daythe first 2 months of this year i was finally able to stay out of bed the whole day.In context ↗ | Moderate | Radical rest |
Adverse events
- Lurasidone (Latuda)“My fun times began with stopping the use of Latuda. I was 2 years into that withdrawal process” In context ↗ Withdrawal problems
- COVID vaccination as treatment“1 week after he 2nd one i woke up and couldn t breath. went to the hospital3 times that week each time theycouldnt find anything wrong.” In context ↗ ER visit
- Corticosteroid pulses“the more meds they gave me for my lungs the worse they got so i took a chance and cut out all but my rescue inhaler. i felt better (over all) immediately.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Vision problems
my eyes started doing that shaking back and forth
In context ↗ - Loss of smell or taste
my taste and smell still come and go
In context ↗ - Breathlessness
chronic cough and pretty severe shortness of breath
In context ↗ - Neuropathy & tingling
the nerve pain is a joke in its self. its really bad in my feet.
In context ↗ - Sleep problems
i go through bouts of dozing off anytime i hold still
In context ↗ - Brain fog
like my IQ went down by half
In context ↗ - Pain & fibromyalgia
some of the stupidest pain i've ever had
In context ↗ - POTS & dysautonomia
I began feeling dizzy if I played very long
In context ↗ - Anxiety & low mood
i have always had a depression issue
In context ↗
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