Long COVID
Severe → near normalIll 1 year before improving or writing
Long COVID: unable to walk five minutes or wash unaided, now nearly normal thanks to time
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I was infected in Jan 2023 and symptoms persisted (never went away)
In context ↗ - At worst: Severe
I could not work for months, I couldn’t even wash myself without assistance for a month or two.
In context ↗ - Now: Near normal
On most days I am 100% better. ... I now only really get dizzy when I’m on screens too much
In context ↗ - Began after: COVID
This was my second infection and I never recovered from it, went straight into long haul.
- Says they never had: Post-exertional malaise
I have neuro-focused LC, never had fatigue or PEM in the physical activity sense.
Read from 64 of their posts and comments; links to the 22 this page draws on
Summary
A 25-year-old woman developed long COVID after a second COVID infection in January 2023. Early on she could not walk five minutes or wash without help, with headaches, dizziness, brain fog, cardiac and gut symptoms. Rest, yoga, walking, supplements, CBT, diet, acupuncture and physiotherapy brought gradual improvement to about 90% by June and 95-100% by December, apart from a one-week relapse after two non-COVID viruses. She credits time most and still has occasional screen-related dizziness.
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What they tried
What they credit
NAC· Helpedomega 3 fish oil· HelpedVit D· HelpedB complex· HelpedMagnesium glycinate· HelpedCBT· Helpedwalks and staying active· Helped · mainyoga, breathing and meditation· Helpedrest and pacing· Helpedcold showers / Wim Hof· Helpedvagus nerve stimulation exercises· Helpedeating lots of salt· HelpedVisible app· Helpedacupuncture· Helpedphysiotherapy· Helped
Also tried
ibuprofen (high-dose NSAID)· Helped a lotomeprazole (PPI)· Helpedanti-inflammatory and gastritis diet· Helpedexposure therapy· HelpedSSRIs· WorseClaritin· Worseeye drops· Worsevitamin C· Not saidzinc· Not saidImmunage· Not saidfermented papaya powder· Not saidiron supplements· Not saidEsomeprazole (Nexium)· Not said
Their words about each treatment
- ibuprofen (high-dose NSAID) · Helped a lot
It definitely helped. The fluid around my heart went away, my chest pain went away for the most part, and my heart rate went down while I was on it
In context ↗ - omeprazole (PPI) · Helped
I had a bad taste after eating and omeprazole helped a lot.
In context ↗ - SSRIs · Worse
I took half a dose of one a month ago that really exacerbated all my neurological symptoms and gave me negative thoughts.
In context ↗ - NAC · Helped
I have been taking NAC, Omega 3, B complex and Vitamin D consistently for 3.5 months and feel like those did help me.
In context ↗ - omega 3 fish oil · Helped
I genuinely feel like supplements helped me, especially omega 3 fish oil 3x/day
In context ↗ - Vit D · Helped
Vit D for mood and heart health
In context ↗ - Magnesium glycinate · Helped
Magnesium glycinate for pain
In context ↗ - vitamin C · Not said
took a bunch of different vitamins (omega 3, NAC, Vitamins C, D, B, and zinc)
In context ↗ - CBT · Helped
I was actively doing cognitive behavioural therapy (CBT) on my own which I believe helped a lot with every mental symptom
In context ↗ - walks and staying active · Helped
going for walks regularly, but especially in the morning helps reduce dizziness and headaches for the rest of the day
In context ↗ - yoga, breathing and meditation · Helped
I’ve been doing yoga for over 10 years so took it slow and did gentle yoga and breathing which helped my dizziness.
In context ↗ - rest and pacing · Helped
Resting on days that symptoms are worse. ... Paced, rested, tried to be patient
- cold showers / Wim Hof · Helped
I have personally found relief with the cold showers/baths. It has helped calm my nervous system down so much.
In context ↗ - vagus nerve stimulation exercises · Helped
doing vagus nerve stimulation exercises and yoga and don’t have this issue anymore
In context ↗ - eating lots of salt · Helped
I tried cold showers, supplementing many different vitamins, eating lots of salt, doing vagus nerve stimulation exercises and yoga and don’t have this issue anymore.
In context ↗ - anti-inflammatory and gastritis diet · Helped
I stuck to a non-inflammatory, gastritis-friendly diet because of my gastritis symptoms
In context ↗ - exposure therapy · Helped
Honestly, what has helped me is exposure therapy.
In context ↗ - Visible app · Helped
what has helped me, is download the app “visible”
In context ↗ - acupuncture · Helped
acupuncture and physiotherapy: helped a lot with neck pain/back pain/neuro symptoms
In context ↗ - Claritin · Worse
Tried a claritin today - is it supposed to make you feel worse? I’m dizzier and more flu-like than other days and have been since taking it
In context ↗ - Immunage · Not said
I’ve been taking that every day almost. Might have helped shorten my LC term but who knows!
In context ↗ - fermented papaya powder · Not said
Something that might have helped, but depends on if you have histamine related issues or not, is fermented papaya powder.
In context ↗ - eye drops · Worse
the ophthalmologist found nothing except minor dry eye. Eye drops make the pain worse though.
In context ↗ - iron supplements · Not said
Never took vitamins consistently before this besides iron supplements for anaemia.
In context ↗ - Esomeprazole (Nexium) · Not said
Headache (side effect from the esomeprazole)
In context ↗
Approaches: CBT & mindset · POTS medication · Alternative therapies · Exercise and activity · Mind-body practices · Pacing · Physiotherapy and rehab · Supplements · Vagus nerve stimulation
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 |
|---|---|---|
| January 2023 | COVID infection; long COVID beganI was infected in Jan 2023 and symptoms persisted (never went away).In context ↗ | Severe |
| March 2023 | weekly improvements; could go to supermarkets and do an hour-long interviewI’ve seen improvements each week and have some days now when I feel normal aside from occasional dizzinessIn context ↗ | Mild |
| May 2023 | baseline up to 80-85%, started a remote jobmy baseline has actually come up a lot and I'm at around 80-85% recoveredIn context ↗ | Mild |
| June 2023 | 90% better and started a new jobI started a new job this week and have been feeling good for approx 2-3 weeks now.In context ↗ | Near normal |
| July 2023 | working full time and super activevisited Copenhagen over the weekend, have been super active recently and am working full time!In context ↗ | Near normal |
| December 2023 | relapsed for 1 week after two non-COVID virusesI recently relapsed for 1 week and then bounced back to normal after getting 2 back to back viruses (non-covid)In context ↗ | Mild |
| December 2023 | back to normal, 95-100% recovered; occasional screen-related dizzinessI consider myself recovered to 95-100% as it usually fluctuates a little as described above.In context ↗ | Near normal |
Adverse events
- Antidepressants (unspecified)“I took half a dose of one a month ago that really exacerbated all my neurological symptoms and gave me negative thoughts. ... I was bed bound for 3 days waiting for it to get out of my system.” In context ↗ Made symptoms worse
- Loratadine (Claritin)“Tried a claritin today - is it supposed to make you feel worse? I’m dizzier and more flu-like than other days and have been since taking it” In context ↗ Made symptoms worse
- Loratadine (Claritin)“I don’t take antihistamines, didn’t tolerate them well as they amplified my dizziness.” In context ↗ Made symptoms worse
- “mine were just headaches by the end of it but it went away as soon as I stopped” In context ↗ Side effects
- Eye drops“Eye drops make the pain worse though.” In context ↗ Made symptoms worse
- Esomeprazole (Nexium)“Headache (side effect from the esomeprazole)” In context ↗ Side effects
- Antidepressants (unspecified)“Antidepressants/SSRIs/meds only exacerbated the rest of my symptoms (like dizziness)” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaTinnitusVision problems
Their words about their symptoms
- Brain fog
I had such bad brain fog that I could barely hold a conversation without spacing out or forgetting words.
In context ↗ - POTS & dysautonomia
I now only really get dizzy when I’m on screens too much
In context ↗ - Headaches & migraine
I also had insanely bad headaches and tingling sensations all over my head.
In context ↗ - Gut problems
I also wake up nauseous sometimes but this passes when I eat something
In context ↗ - Light & noise sensitivity
Light sensitivity (only some days) ... Noise sensitivity (only some days)
In context ↗ - Heart symptoms & palpitations
Had cardiac inflammation as a post-viral effect.
In context ↗ - Muscle weakness
Muscle weakness
In context ↗ - Neuropathy & tingling
tingling sensations all over my head
In context ↗ - Anxiety & low mood
I also developed such huge anxiety and depression in the first few months
In context ↗ - Flu-like symptoms
Low grade fever/feverish but no fever
In context ↗ - Tinnitus
my hearing loss, tinnitus, and brain fog have all resolved.
In context ↗ - Vision problems
difficulty focusing eyes
In context ↗
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