Long COVID
Severe → much betterIll 3 years before improving or writingNeeds ongoing treatment
Bedbound early in long COVID, now much better with rest and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
Got Long Covid around Jan 2022.
In context ↗ - At worst: Severe
At my worst, I was bedbound for a while.
In context ↗ - Now: Much better
Everything is definitely a bit better, but I still have very bad days.
In context ↗ - Began after: COVID
Also got covid in late Dec 2021.
Read from 59 of their posts and comments; links to the 33 this page draws on
Summary
A man caught COVID in December 2021 and was bedbound for the first five to six months of long COVID. He slowly improved to about 60–80%, crediting time, rest, pacing and low-dose naltrexone, but PEM and relapses remained. By late 2024 he worked from home with breaks, had good days near normal and bad weeks, and still felt far from fully recovered.
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What they tried
What they credit
Also tried
Inhaler· Helped a lotSteroid eye drops· HelpedRefresh Mega-3 eye drops· HelpedHeated eye mask· HelpedHydroxyzine (Atarax)· HelpedPrescribed anti-anxiety meds· HelpedMagnesium· HelpedWellbutrin· HelpedFasting 16/8· Helped · wore offMeditation· HelpedPedialyte packets· HelpedAntihistamines· HelpedXiidra· HelpedWhite noise and reducing stimuli· HelpedBeing outside near nature· HelpedHealthy vegan/pescatarian diet with smaller portions· HelpedMultivitamins with vitamin C, D and B12· HelpedTherapy· Not said
Their words about each treatment
- Inhaler · Helped a lot
they will most likely give you an inhaler. I’ve had it for a few weeks now and it’s helped out tremendously
In context ↗ - Steroid eye drops · Helped
the steroid drops plus Refresh Mega-3 eye drops are working wonders at the moment
In context ↗ - Heated eye mask · Helped
Heated eye mask is like a reset button for the eyes as well.
In context ↗ - Hydroxyzine (Atarax) · Helped
I also use atarax/hydroxynine. It’s the only thing that helps me sleep at the moment.
In context ↗ - Prescribed anti-anxiety meds · Helped
It’s also a little better with my anti anxiety meds.
In context ↗ - Magnesium · Helped
Magnesium also helps too.
In context ↗ - Wellbutrin · Helped
Wellbutrin has worked pretty good for my brain fog so far even though the fatigue is still there.
In context ↗ - Fasting 16/8 · Helped
Fasting 16/8 helped some of my symptoms during month 2 and 3. During month 4 and 5, it started affecting my overall energy so I stopped around that time.
In context ↗ - Meditation · Helped
Meditation or laying in bed in a dark, quiet room helps.
In context ↗ - Pedialyte packets · Helped
getting one of those Pedialyte packets and mixing it in a bottle to drink. It actually helps me a bit to be somewhat mentally productive in the morning
In context ↗ - Antihistamines · Helped
taking antihistamines to make the brain fog a bit easier to deal with
In context ↗ - Kombucha · Helped
Kombucha has helped.
In context ↗ - Xiidra · Helped
I’ve been using Xiidra prescribed by my doctor and it has been working wonders for my dry eye for months.
In context ↗ - White noise and reducing stimuli · Helped
that manages the brain fog and derealization
In context ↗ - Bivalent booster · Helped
most of my neurological symptoms are gone ... my motivation and overall brain function have brought me back to maybe 80%
In context ↗ - Modafinil · Helped
This is why my doctor let me try Modafinil and it has been working, especially for working full-time and socializing.
In context ↗ - Pacing · Helped
The best ways to manage everything so far in my opinion are: pacing, multiple breaks, and a lot of rest.
In context ↗ - Walking · Helped
Walking even if it’s a little bit.
In context ↗ - Being outside near nature · Helped
Being outside especially near nature.
In context ↗ - Healthy vegan/pescatarian diet with smaller portions · Helped
Vegan diet has helped !
In context ↗ - Multivitamins with vitamin C, D and B12 · Helped
Multivitamins with an emphasis on Vitamin C, D and B12.
In context ↗ - LDN · Helped a lot
LDN has helped me with pretty much all of my fatigue, anxiety, depression, PEM, and overstimulation. It seems like it helped my brain the most.
In context ↗ - Eastern medicine · Helped
I’m around 60-75% with medication and eastern medicine
In context ↗ - Therapy · Not said
Therapy and medication can only do so much.
In context ↗
Approaches: Alternative therapies · Exercise and activity · Pacing · Stimulants · Supplements · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021-12-23 | COVID-19 infection and start of long COVIDSince December 23 for me.In context ↗ | Severe | |
| early 2022 | bedbound early in illnessI was bedbound the first 5-6 months of LC.In context ↗ | Severe | |
| 2022-03-07 | brain fog and fatigue slowly improvingThe brain fog and fatigue is veryyy slowly getting betterIn context ↗ | Severe | Pacing and the energy envelope |
| 2022-05-12 | about 60% recoveredAbout 6 months into longhauling, 60% recovered.In context ↗ | Mild | |
| 2022-11-09 | working full-time again but resting after workI’m working full-time again, but I go straight to bed or resting a bunchIn context ↗ | Mild | |
| 2022-12-02 | symptoms worsened in autumnall of my symptoms have gotten worse including fatigue, PEM, brain fogIn context ↗ | Moderate | |
| 2023-01-12 | better overall after more than a yearAnd it has been better overall.In context ↗ | Mild | |
| 2023-08-12 | 80% recovery with relapses to 50%I’m at 80% recovery with relapses that get me to 50%.In context ↗ | Mild | |
| 2023-12-04 | 75% recovered with medication and supplements23 months in. 75% recovered with medication and supplements.In context ↗ | Mild | Low-dose naltrexone |
| 2024-04-18 | bad PEM after shopping and changing car batteryI’m experiencing bad PEM after shopping and changing my car battery two days agoIn context ↗ | Moderate | |
| 2024-09-06 | good days near normal and bad weeksI have good days and bad weeks now. I feel 90% normal when I have good days, but when I feel bad, it usually lasts for weeksIn context ↗ | Mild |
Adverse events
- Bupropion (Wellbutrin)“I only experienced small side effects during those two weeks: just a little bit of dizziness and mood swings.” In context ↗ Side effects
- Intermittent fasting“During month 4 and 5, it started affecting my overall energy so I stopped around that time.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“I just can’t take it every single day though or I’ll get dizzy.” In context ↗ Side effects
- COVID vaccination as treatment“The Bivalent Booster (Pfizer) definitey made my whole arm sore and made my whole body achy and weak for a few days.” In context ↗ Side effects
- Low-dose naltrexone“my sleeping problems get much worse on a higher dose because of how late it makes me stay up and stay focused.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“A higher dosage makes me push way harder through work and through the day ... I feel way worse the next day.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I can’t nap or take breaks sometimes while I’m on it because I get too focused and it gets me so tired at night.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
PEM (Post-Exertional Malaise)
In context ↗ - Brain fog
brain fog (all sorts like concentration and cognitive troubles)
In context ↗ - POTS & dysautonomia
dizziness, vertigo
In context ↗ - Pain & fibromyalgia
random all-over body soreness
In context ↗ - Light & noise sensitivity
overstimulation to light and sounds
In context ↗ - Breathlessness
trouble breathing especially after exertion
In context ↗ - Heart symptoms & palpitations
some racing heart tendencies
In context ↗ - Neuropathy & tingling
finger and toes tingling
In context ↗ - Anxiety & low mood
depression, anxiety, fatigue
In context ↗ - Temperature regulation
body temperature irregularities
In context ↗ - Vision problems
some vision troubles
In context ↗
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