Long COVID
Severe → much betterIll 3 years before improving or writingNeeds ongoing treatment
Bedridden with long COVID, now much better after propranolol and infusions
- 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
8 months into long haul, it was supposed to get better by now.
In context ↗ - At worst: Severe
I’ve been completely in bed and I get up just to use the bathroom or do very basic self care like eat or bathe now and then.
In context ↗ - Now: Much better
After being homebound for years, I’m quite okay with wearing a mask to a concert if it means I can enjoy being out there
In context ↗ - Began after: COVID
Long Covid batch of ‘22 :(
In context ↗
Read from 66 of their posts and comments; links to the 30 this page draws on
Summary
They caught COVID in 2022 and were later diagnosed with POTS; by January 2023 they were bedridden, unable to sit up, walk or use the bathroom. Propranolol helped control the heart-rate spikes, and by mid-2025 they could do chores and short walks after being bedbound. A cold in autumn 2025 set them back, but infusions in 2026 lifted some fatigue and fog; by September 2026 they described themselves as very well managed, though flare-ups still threw them off.
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What they tried
What they credit
Also tried
propranolol (Inderal)· HelpedDiamox· Helpedantidepressants (SSRIs, SNRIs, mirtazapine)· Helpedgentle exercises by Jeanne de Bon· HelpedCBT and exposure therapy· Helpedmeditation and breathing techniques· Helpedlying down / lying in darkness· Helpedmuscle relaxants· Worsemulti vitamins / supplements· Not saidvestibular rehab· Not saidhydration, salt loading, electrolytes, compression leggings· Not saidhydration, salt loading, electrolytes, compression leggings· Not saidmagnesium· Not saidcoq10· Not saidIV· Not saidice dips· Not saidnervous system retraining stuff found online· Not said
Their words about each treatment
- muscle relaxants · Worse
even some muscle relaxants push my BP down to 80/50
In context ↗ - propranolol (Inderal) · Helped
It was helping with my HR spikes and palpitations a lot.
In context ↗ - Diamox · Helped
Lying down all day or Diamox.
In context ↗ - multi vitamins / supplements · Not said
Started on beta blockers for POTS, multi vitamins, SSRIs.
In context ↗ - antidepressants (SSRIs, SNRIs, mirtazapine) · Helped
anti depressants are among the stuff that made a small difference
In context ↗ - gentle exercises by Jeanne de Bon · Helped
Try gentle exercises by Jeanne de Bon on YouTube, they helped me a bit.
In context ↗ - vestibular rehab · Not said
Have tried vestibular rehab, CBT, anti depressants, beta blockers, electrolytes and fluid upping, vitamins.
In context ↗ - CBT and exposure therapy · Helped
Exposure therapy, CBT, beta blockers, supplements, breathing techniques, anti depressants are among the stuff that made a small difference.
In context ↗ - hydration, salt loading, electrolytes, compression leggings · Not said
I do the POTS basics - compression leggings, salt, upping fluid, electrolytes.
In context ↗ - magnesium · Not said
Still on beta blockers and magnesium
In context ↗ - coq10 · Not said
I take magnesium, coq10.
In context ↗ - IV · Not said
I got an IV, 10 days back and since then I’ve had a lump on my hand a little away from the IV site.
In context ↗ - pacing around energy levels · Helped
I plan everything based on energy levels and if I have a crash then I just rest it out. Sucks but works.
In context ↗ - ice dips · Not said
Have tried ice dips, meditation, CBT and some nervous system retraining stuff I found online.
In context ↗ - lying down / lying in darkness · Helped
Somehow returning to lie in darkness is the only thing that has helped till date
In context ↗ - iron infusions · Helped
I had them with good results. Definitely felt an increase in stamina.
In context ↗
Approaches: Pacing · 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 8 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 |
|---|---|---|---|
| early 2022 | long COVID after a 2022 infectionLong Covid batch of ‘22 :(In context ↗ | Not stated | |
| 2022-12-12 | began to feel better on POTS medication for two weeksin general was beginning to feel better, had more energy and less heart rate spikesIn context ↗ | Moderate | Propranolol (Inderal) |
| 2022-12-12 | crash with chest pressure, derealization and feeling poisonedAnd yesterday the crash happened.In context ↗ | Moderate | |
| 2023-01-06 | bedridden after a flu-like illnessI can’t walk or even use the bathroom, I feel like I’m about to faint and my heart rate spikes up.In context ↗ | Severe | |
| 2023-03-19 | constant dizziness, unable to sit up or walkNow I’m not anxious as much anymore but I have constant dizziness and it’s very intolerable because I can’t sit up or walk.In context ↗ | Severe | |
| 2023-07-02 | POTS improving while PVCs worsenedmy POTS is getting better and the PVCs are progressively getting worseIn context ↗ | Moderate | Propranolol (Inderal) |
| 2023-07-30 | ongoing crash, bed boundI’ve been completely in bed and I get up just to use the bathroom or do very basic self care like eat or bathe now and then.In context ↗ | Severe | |
| 2024-01-19 | month-long unexplained crash, baseline back to onsetnow I’m in a month long crash suddenly and I have no idea whyIn context ↗ | Moderate | |
| 2024-05-02 | learned to plan around energy levels and rest out crashesIt’s just kinda gotten easier to work around. I plan everything based on energy levels and if I have a crash then I just rest it out.In context ↗ | Moderate | Pacing and the energy envelope |
| 2025-06-12 | from bedbound to chores and short walksWent from being bed bound to now being able to do chores on 3 out of 4 weeks a month.In context ↗ | Mild | |
| 2025-10-25 | backslide two weeks after a coldSuddenly things have taken a bad turn and I’m back horizontal with intense fatigue and dizziness.In context ↗ | Severe | |
| 2026-02-19 | still dizzy, only lying in darkness helpsreturning to lie in darkness is the only thing that has helped till date but that’s also stopped me from living normallyIn context ↗ | Moderate | |
| 2026-05-08 | able to go out to concerts againAfter being homebound for years, I’m quite okay with wearing a mask to a concert if it means I can enjoy being out thereIn context ↗ | Mild | |
| 2026-06-14 | POTS spikes lower than beforeThis used to be much higher. So I feel the POTS is getting better.In context ↗ | Mild | Propranolol (Inderal) |
| 2026-06-30 | stamina up and some fog and fatigue lifted after iron infusionssome amount of the fog and fatigue definitely lifted after the infusionsIn context ↗ | Mild | Iron infusion / ferritin repletion |
| 2026-09-06 | symptoms very well managed though night episodes still occurVery well managed as well.In context ↗ | Mild |
Adverse events
- “even some muscle relaxants push my BP down to 80/50” In context ↗ Low blood pressure or fainting
- Propranolol (Inderal)“I started propranolol for POTS one week ago ... I woke up this morning with really bad chest fatigue, SOB and internal tremors” In context ↗ Side effects
- Mirtazapine (Remeron)“Tried SSRIs and SNRIs but they didn’t go down well.” In context ↗ Side effects
- Mirtazapine (Remeron)“I also think the antidepressants are playing a part in the weight gain.” In context ↗ Side effects
- Propranolol (Inderal)“Been on propranolol for the last 6-7 months and the weight gain has been very rapid.” In context ↗ Side effects
- Propranolol (Inderal)“It’s meh. Hard to fall asleep but okay once I manage to. Had vivid dreams for the first one month but it settled after that.” In context ↗ Insomnia from treatment
- Iron infusion / ferritin repletion“I couldn’t tolerate oral medication because of GI side effects.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Major symptoms are fatigue and PEM.
In context ↗ - Brain fog
And I have head pressure/ brain fog too.
In context ↗ - POTS & dysautonomia
I’ve been diagnosed with POTS from the orthostatic intolerance
In context ↗ - Sleep problems
Hard to fall asleep but okay once I manage to.
In context ↗ - Headaches & migraine
Head feels heavy, ears plugged and feels like I have a concussion.
In context ↗ - Gut problems
stomach feels funny
In context ↗ - Light & noise sensitivity
light and sound sensitivity right now
In context ↗ - Breathlessness
really bad chest fatigue, SOB and internal tremors
In context ↗ - Heart symptoms & palpitations
Every time I stand up, I get crazy palpitations and HR spikes
In context ↗ - Muscle weakness
I’m back with the jelly legs and high heart rate.
In context ↗ - Anxiety & low mood
Really anxious today
In context ↗ - Flu-like symptoms
feeling poisoned inside
In context ↗ - Temperature regulation
Woke up sweating and with high heart rate.
In context ↗ - Vision problems
And my eyes start blurring if I push through.
In context ↗
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