Long COVID with brain fog and pain, now nearly back to normal after rest and pacing
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
I’ve been long hauling since Feb 2021 (first infection Oct 2020)
In context ↗ - At worst: Moderate
I had to quit regular work. I cannot muster the energy to do things. I need like 12-15 hrs sleep.
In context ↗ - Now: Near normal
CFS / post exertional malaise was one of my biggest symptoms. I am almost fully recovered.
In context ↗ - Began after: COVID
I actually contracted COVID in 2020 from him
Read from 30 of their posts and comments; links to the 19 this page draws on
Summary
They caught COVID-19 in October 2020 and long hauled from February 2021 with post-exertional malaise, back and muscle pain, brain fog, parosmia and weight loss; their worst period began in summer 2022. They named no single remedy, crediting rest after quitting their job, pacing, therapy, antidepressants and electrolytes with gradual gains, and also got acupuncture. By October 2024 they were almost fully recovered, though working out had caused a relapse.
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What they tried
What they credit
Also tried
Their words about each treatment
- Benadryl · Helped
I take Benadryl at night and by miracle I’m in less pain the next day.
In context ↗ - low histamine diet · No change
I did all the diet stuff and nothing was a sure fix.
In context ↗ - acupuncture · Not said
Spending all my business loan money on acupuncture, chiropractor, massage, anything to try and help me
In context ↗ - chiropractor · Not said
I’ve gone to a chiropractor twice
In context ↗ - deep tissue massage · No change
just had a deep tissue massage too. When I still felt so much discomfort and pain after the massage I realized it was more than just sore muscles from cleaning.
In context ↗ - heating pad · Helped
I use a heating pad, it helps.
In context ↗ - Magic wand back massager · Helped
Magic wand back massager too.
In context ↗ - tennis ball · Worse
When I take a tennis ball and wall to them the pain makes me cry, and nauseous.
In context ↗ - personal trainer and lifting · Worse
later that night after meeting with the trainer (I lifted, stressed my muscles) I was having insane back spasms and chest pain
In context ↗ - Visible armband · Worse
I used the armband to track my heart rate but it gave me anxiety & doom.
In context ↗ - LDN · Worse
I tried LDN but messed w my sleep so u stopped.
In context ↗ - pacing / physical therapy for pacing · Helped
I go to a physical therapist thru the long covid clinic that is helping build my capacity for exercise.
In context ↗ - quitting job to rest · Helped a lot
I quit my job & took out a loan to rest.
In context ↗ - electrolytes powder · Helped
Also drinking electrolytes powder in my water daily and I swear that’s helping so much!!
In context ↗ - probiotics & kefir · Helped
I did start to improve after taking probiotics & drinking kefir
In context ↗ - anti depressants · Helped
I do recommend taking anti depressants tho. Helped get me outta the funk.
In context ↗ - ADHD medication · Worse
now I don’t even take it bc it just makes me feel worse
In context ↗ - protein shakes · Helped
with protein shakes from the grocery store.
In context ↗ - Pilates · Helped
Start going to Pilates. Lots of guys in my classes. Way easier on the body
In context ↗ - therapist · Not said
I see a therapist & get acupuncture.
In context ↗ - changing diet and no alcohol · No change
New thing I’m gonna try is actually changing my diet and no alcohol.
In context ↗ - time · Helped a lot
It just took time, I didn’t try any magic cures.
In context ↗
Approaches: POTS medication · Other drugs and medicines · Pacing · Radical rest · Supplements
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 chart starts 18 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| February 2021 | Long COVID began after a COVID-19 infection in October 2020I’ve been long hauling since Feb 2021 (first infection Oct 2020)In context ↗ | Not stated |
| summer 2022 | worst symptomsI’ll say my worst symptoms started summer of 2022In context ↗ | Moderate |
| April 2023 | crashed after a session with a personal trainerlater that night after meeting with the trainer (I lifted, stressed my muscles) I was having insane back spasms and chest painIn context ↗ | Moderate |
| May 2023 | danced for four hours without crashingI danced for 4 hours straight recently (two step). Didn’t crash.In context ↗ | Mild |
| October 2023 | no crash for over a month, finally improvingI haven’t had a crash in over a month or more, and feel I’m finally improving in a lot of waysIn context ↗ | Mild |
| October 2024 | relapse after being too active and working outBeing too active/ working out made me relapseIn context ↗ | Mild |
| October 2024 | almost fully recoveredI am almost fully recovered. There is hope.In context ↗ | Near normal |
Adverse events
- Stimulants (unspecified)“I have adhd and it always helped me, now I don’t even take it bc it just makes me feel worse” In context ↗ Made symptoms worse
- Low-dose naltrexone“I tried LDN but messed w my sleep so u stopped.” In context ↗ Insomnia from treatment
- Symptom-tracking apps and wearables (Visible)“I used the armband to track my heart rate but it gave me anxiety & doom.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
CFS / post exertional malaise was one of my biggest symptoms
In context ↗ - Pain & fibromyalgia
I’ve had bad back pain and the antihistamine really helps some days with general muscle pain
In context ↗ - Brain fog
I can’t find the words half the time.
In context ↗ - Sleep problems
I need like 12-15 hrs sleep.
In context ↗ - Loss of smell or taste
I suffered from parosmia for over a year but I recovered.
In context ↗ - Breathlessness
Most days I can’t get a deep breath.
In context ↗ - Heart symptoms & palpitations
chest pain I honestly thought I was having a heart attack
In context ↗ - Anxiety & low mood
I felt suicidal awhile back.
In context ↗ - Mast cell (MCAS) & allergies
I discovered my histamine intolerance by accident
In context ↗ - Temperature regulation
A year ago I could barely keep any weight on, was having night sweats and constantly crashing.
In context ↗
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