Long COVID
Severe → somewhat betterIll 3 years before improving or writingNeeds ongoing treatment
Largely housebound with long COVID brain fog and POTS, now somewhat better with pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I got long covid immediately after my first infection, April 6, 2022.
In context ↗ - At worst: Severe
I've been basically housebound since, except when I have to attend a medical appointment can't be arranged virtually.
In context ↗ - Now: Somewhat better
My health is better, mostly because I'm better at pacing and have scaled my activity way back. And am on more effective medications. But any time I push it, things flare up again.
In context ↗ - Began after: COVID
I got long covid immediately after my first infection, April 6, 2022.
In context ↗
Read from 75 of their posts and comments; links to the 37 this page draws on
Summary
Creek 72346 got long COVID in April 2022; a February 2023 reinfection left them largely housebound with brain fog, POTS, pain and PEM. Acupuncture, antihistamines and gabapentin helped individual symptoms, while a beta-blocker with midodrine and pacing improved their quality of life most. Cymbalta eased pain but withdrawal was brutal. Over four years on they remain mostly homebound, crashing when they overdo it.
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What they tried
What they credit
Also tried
ADHD meds / Vyvanse· Helped a lotpress needles (round stickers on temples)· Helpedmusician's earplugs, soft earplugs and sleep mask with speakers· Helpedrehab therapy through a long covid clinic (PT, OT, speech, psych)· Helpedincreased water and salt, compression stockings· Helpedincreased water and salt, compression stockings· Helpedmeditation and deep breathing· Helpedgabapentin· HelpedMidodrine· HelpedTrintellix (vortioxetine) trial· No changeantidepressant (prescribed for anxiety)· WorsePaxlovid· WorseCymbalta (duloxetine)· Worseexercise and physiotherapy exercise programme· Worseiron supplement· Not saidvitamin D supplement· Not saidvitamin B12 supplement· Not saidmetformin· Not saidnaturopath (Dr. Jen Vidmar, Rebalance Naturopath clinic)· Not said
Their words about each treatment
- antidepressant (prescribed for anxiety) · Worse
told me to take an antidepressant that made my brain fog even worse
In context ↗ - press needles (round stickers on temples) · Helped
My physical therapist puts these little round stickers on my temples. ... It's the only thing so far that has helped my headaches.
In context ↗ - acupuncture · Helped a lot
Acupuncture has been a game changer for me. It's the only thing that has made a difference with my vertigo and brain fog.
In context ↗ - musician's earplugs, soft earplugs and sleep mask with speakers · Helped
have made it so I can be around other people or go to a restaurant without being completely overwhelmed by the noise.
In context ↗ - desloratadine, then cetirizine · Helped
I have had some minor improvement with acupuncture and antihistamines.
In context ↗ - symptom log in a day planner · Helped
It helps me pace my activities and see overall patterns.
In context ↗ - rehab therapy through a long covid clinic (PT, OT, speech, psych) · Helped
Physical therapy has been helpful for me in finding ways to breathe, move, stretch that can at least stop the deconditioning.
In context ↗ - pacing and rest · Helped a lot
Pacing and rest is so far the only thing that has helped.
In context ↗ - Trintellix (vortioxetine) trial · No change
I was also part of the trintellix trial, but it did nothing for me, so maybe I was taking the placebo.
In context ↗ - iron supplement · Not said
I take my iron supplement at night so I sleep through the stomach upset.
In context ↗ - Paxlovid · Worse
I tried to take Paxlovid after my reinfection, but the side effects were so bad that I stopped after one dose.
In context ↗ - Cymbalta (duloxetine) · Worse
I went on Cymbalta and then needed to stop due to side effects. ... it definitely did more harm than good for me.
In context ↗ - vitamin D supplement · Not said
I for sure have a vitamin D deficiency. ... she bumped the dosage back up.
In context ↗ - increased water and salt, compression stockings · Helped
I was starting to make some improvements with increased water/salt and compression stockings
In context ↗ - meditation and deep breathing · Helped
Acupuncture and meditation have really helped with my stress and health anxiety, and to help manage my physical symptoms.
In context ↗ - psychotherapist and CBT · Helped
I also found an amazing therapist who specializes in treating people with chronic illnesses. She has probably made the biggest difference.
In context ↗ - gabapentin · Helped
I recently started gabapentin for neuropathy, and my tinnitus has gotten significantly better.
In context ↗ - exercise and physiotherapy exercise programme · Worse
Exercise is actually harmful for me
In context ↗ - vitamin B12 supplement · Not said
My D, B12, and ferritin were all low and was told to take supplements.
In context ↗ - metformin · Not said
I don't know it it is helping my long covid, but now that I am acclimated to it, I'm going to try it for a while and see.
In context ↗ - bisoprolol (beta blocker) · Helped
I'm finally on a combination of beta blocker and blood pressure meds that help tone down the POTS a little.
In context ↗ - Midodrine · Helped
Bisoprolol and Midodrine for POTS-like dysautonomia.
In context ↗ - ADHD meds / Vyvanse · Helped a lot
Vyvanse is the only reason I'm not still sleeping 16 to 18 hours a day.
In context ↗ - naturopath (Dr. Jen Vidmar, Rebalance Naturopath clinic) · Not said
I've also had good experiences with Dr. Jen Vidmar at the Rebalance Naturopath clinic in London.
In context ↗
Approaches: CBT & mindset · H1 antihistamines · Alternative therapies · Beta-blockers · Pacing
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 6 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 | After |
|---|---|---|---|
| April 6, 2022 | long COVID began immediately after first infectionI got long covid immediately after my first infection, April 6, 2022.In context ↗ | Not stated | |
| October 2022 | hit a wall after trying to work from home 12 hours a week; symptoms worsenedI tried to work from home at reduced hours (12 hours a week), but I hit a wall and then my symptoms started getting worse.In context ↗ | Moderate | |
| December 2022 | at their worst: getting lost on the way home, could not dress or readmy symptoms were at their worst and I was getting lost on the way home, couldn't figure out which order to put my clothes on, couldn't understand when people spoke to me, couldn't readIn context ↗ | Severe | |
| February 2023 | COVID reinfection turned all symptoms up; housebound sinceI was reinfected in February 2023. Whatever symptoms I thought I had, the 2nd infection turned the volume all the way up.In context ↗ | Severe | |
| August 2023 | some symptoms improved with medication and rehab therapiesSome symptoms have improved with medication and rehab therapies. Some have not.In context ↗ | Moderate | |
| March 2024 | recovery stalled, cognitive symptoms worseningI'm 2 years in, recovery has stalled out. Cognitive symptoms are actually worsening.In context ↗ | Severe | |
| July 2024 | first moments of the day not feeling like drowningfor the first time, I noticed that there were parts of my day where I didn't feel like I was drowningIn context ↗ | Severe | |
| January 2025 | beta blocker and BP meds toned down POTS; pacing and kitchen equipment helpedI'm finally on a combination of beta blocker and blood pressure meds that help tone down the POTS a little.In context ↗ | Moderate | Bisoprolol (Concor) |
| February 2026 | better with pacing, scaled-back activity and more effective medications; still flares on overdoing itMy health is better, mostly because I'm better at pacing and have scaled my activity way back. And am on more effective medications. But any time I push it, things flare up again.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Antidepressants (unspecified), Vortioxetine (Trintellix), Duloxetine (Cymbalta)“told me to take an antidepressant that made my brain fog even worse” In context ↗ Made symptoms worse
- Desloratadine (Clarinex, Aerius), Cetirizine (Zyrtec)“I take it at night so it doesn't make me more dizzy” In context ↗ Side effects
- Iron infusion / ferritin repletion“I take my iron supplement at night so I sleep through the stomach upset” In context ↗ Gut side effects
- “the medication made me feel awful and it took me several days to rebound because of the PEM” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“the side effects were so bad that I stopped after one dose ... the metallic taste side effect made it intolerable” Side effects
- Duloxetine (Cymbalta)“Withdrawal was NOT a good time, and my pain is back full force.” In context ↗ Withdrawal problems
- Duloxetine (Cymbalta)“was also contributing to the fogginess and hypersomnia” In context ↗ Side effects
- Everyday exercise and activity“interventions, including exercise (also documented) that have been tried without much positive impact, but have led to significant PEM crashes” In context ↗ Made symptoms worse
- Cetirizine (Zyrtec)“I immediately developed hives and horrendous itching.” In context ↗ Withdrawal problems
- Metformin“I stuck with it, and my gi system finally calmed down after about a month.” In context ↗ Gut side effects
- Everyday exercise and activity“I had to stop because it was causing increasingly severe PEM” In context ↗ Made symptoms worse
- Antidepressants (unspecified), Vortioxetine (Trintellix), Duloxetine (Cymbalta)“was then angry when I complained side effects were making things worse and wanted to discontinue them” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
any cognitive strain or stress sends me into a crash
In context ↗ - Brain fog
It sounds exactly like the brain fog I have been dealing with for about a year.
In context ↗ - POTS & dysautonomia
my autonomic nervous system is dysregulated because of long covid (cardiac dysautonomia, not anxiety)
In context ↗ - Mast cell (MCAS) & allergies
I immediately developed hives and horrendous itching.
In context ↗ - Sleep problems
Vyvanse is the only reason I'm not still sleeping 16 to 18 hours a day.
In context ↗ - Pain & fibromyalgia
my pain is back full force
In context ↗ - Gut problems
Now I have fever aches and my gut doesn't feel so hot.
In context ↗ - Light & noise sensitivity
I'm very sensitive to sensory input, especially auditory and visual.
In context ↗ - Heart symptoms & palpitations
I have episodes of tachycardia triggered by any exertion
In context ↗ - Muscle weakness
severe tachycardia, dizziness, vertigo, chest pain, blood pooling in feet and legs, weakness, and almost fainting when standing up
In context ↗ - Neuropathy & tingling
I recently started gabapentin for neuropathy
In context ↗ - Anxiety & low mood
Acupuncture and meditation have really helped with my stress and health anxiety
In context ↗ - Tinnitus
my tinnitus has gotten significantly better
In context ↗ - Temperature regulation
The heat really triggers my symptoms.
In context ↗ - Flu-like symptoms
Now I have fever aches
In context ↗
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