Long COVID
Severe → no benefitIll for 6 months
Mostly housebound and severe with long COVID, pacing and rest brought no benefit
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 months
- Last post
- Feb 2022
In their words
- Condition: Long COVID
I'll be coming up on 3 months mid November since I tested positive for C-19
In context ↗ - At worst: Severe
I'm mostly house/bedbound ... I'd say I'm severe at this point
In context ↗ - Now: No benefit
I'm in the middle of a crash right now but hanging in there
In context ↗ - Began after: COVID
Got COVID in August
Read from 30 of their posts and comments; links to the 17 this page draws on
Summary
Otter 23013 caught COVID in August 2021 and was left with long COVID: brain fog, insomnia, GI problems and later POTS/dysautonomia. A double vaccination in September cleared the brain fog, anosmia and burning hands and feet but brought on lightheadedness and vertigo. By January 2022 they described themselves as mostly house- or bedbound and severe. Pacing and rest brought only slow, partial improvement.
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What they tried
Also tried
double vaxxed· Helpedmelatonin· Helped · wore offCBD with some THC· Helped · wore offGatorade, salt intake and electrolytes· HelpedBenadryl· Helpedwedge pillow· Helpedpacing and resting· Helpedwatching what I eat after a certain time in the evening· Helpedsunglasses / blue light shades· HelpedXanax· Helpedvalerian· No changeworking out with weights· Worseapp to monitor symptoms· Not said
Their words about each treatment
- double vaxxed · Helped
Took away some symptoms like crazy brain fog, anosmia and burning feet/hands, brought on new ones like constant lightheadedness/vertigo episodes.
In context ↗ - working out with weights · Worse
I tried going back to working out in the beginning and started experiencing the same. I'd cut back on the workouts
In context ↗ - melatonin · Helped
I think I've become immune to the melatonin unfortunately. Might start it up again.
In context ↗ - CBD with some THC · Helped
CBD with some THC was working for a while and then stopped too unfortunately.
In context ↗ - Gatorade, salt intake and electrolytes · Helped
the salt intake and have been trying that out. It DOES alleviate my headaches and dizziness sometimes but not completely.
In context ↗ - Benadryl · Helped
I've been taking Benadryl to help me get some sleep and while it has been helping some
In context ↗ - wedge pillow · Helped
My wedge pillow helps tons with this
In context ↗ - pacing and resting · Helped
Once I tried pacing and resting I think some things are starting to improve, although very slowly.
In context ↗ - watching what I eat after a certain time in the evening · Helped
I gotta watch the food intake. Usually helps.
In context ↗ - sunglasses / blue light shades · Helped
sunglasses/blue light shades have helped
In context ↗ - app to monitor symptoms · Not said
I'm working on monitoring them more and more with an app.
In context ↗ - valerian · No change
Valerian didn't work for me either.
In context ↗ - Xanax · Helped
I finally gave in and had to take a xanax to finally calm me down enough to at least rest for 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| August 2021 | mild COVID infectionI also had "mild" covid. No hospitalization, was still able to work from home but had a mean brain fog for a bit.In context ↗ | Mild | |
| September 2021 | double vaccination: some symptoms cleared, lightheadedness and vertigo beganTook away some symptoms like crazy brain fog, anosmia and burning feet/hands, brought on new ones like constant lightheadedness/vertigo episodes.In context ↗ | Mild | |
| late November 2021 | crash after Thanksgiving and a long weekend of activityEventually I get through it but yes most of the day is spent in bed.In context ↗ | Moderate | |
| December 2021 | some things starting to improve with pacing and restOnce I tried pacing and resting I think some things are starting to improve, although very slowly.In context ↗ | Mild | Pacing and the energy envelope |
| 2022-01-29 | mostly house- or bedbound and self-rated severeunfortunately I'm mostly house/bedbound ... I'd say I'm severe at this pointIn context ↗ | Severe | |
| 2022-02-03 | still having flares of stinging, manual breathing, twitches and tremorsI get stinging but only in hands and feet from neuropathy or blood pooling. I have manual breathing sometimes at night, muscle twitches and even internal body tremorsIn context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“Any trouble with sleep at all? I feel like mine got worse after the 2nd dose...” In context ↗ Insomnia from treatment
- Diphenhydramine (Benadryl)“I've been taking Benadryl to help me get some sleep and while it has been helping some, last night was weird because it was the first time the "spins" like that has happened in a while.” In context ↗ Side effects
- COVID vaccination as treatment“Took away some symptoms like crazy brain fog, anosmia and burning feet/hands, brought on new ones like constant lightheadedness/vertigo episodes.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I've definitely experienced PEM and when that happens I immediately rest.
In context ↗ - Brain fog
had a mean brain fog for a bit
In context ↗ - POTS & dysautonomia
Recently diagnosed POTS/Dysautonomia in general.
In context ↗ - Sleep problems
my sleep is shit right now
In context ↗ - Headaches & migraine
my PEM presents itself in the form of migraines, headaches, dizziness and general malaise after doing too much
In context ↗ - Gut problems
I have some pretty gnarly GI issues that act up at night like reflux
In context ↗ - Heart symptoms & palpitations
I occasionally get the chest pains/jolts, even when just relaxing doing nothing.
In context ↗ - Muscle weakness
The noodle limbs are still kinda there especially in the morning
In context ↗ - Neuropathy & tingling
neuropathy stuff in the beginning of infection (burning extremities, pins/needles) that have subsided luckily after vaccination
In context ↗ - Flu-like symptoms
I sometimes get a fever like feeling in my body when I've done too much
In context ↗ - Loss of smell or taste
Took away some symptoms like crazy brain fog, anosmia
In context ↗ - Temperature regulation
I dread the heat as well, especially at night.
In context ↗