Severe long COVID breathlessness, now somewhat better with breathing exercises

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 4.5 years
Last post: May 2025

In their words

Condition: Long COVIDI got Covid in August of 2020, and I am slowly, very slowly getting better. In context ↗
At worst: SevereAt my worst, I was spending 2 hours a day on nebulizer treatments ... I was coping with the fact that I had a terminal illness.
Now: Somewhat betterIt has gotten better with time. I haven't had a re-infection since 2022, but my long-haul definitely came from that infection in 2020. In context ↗
Began after: COVIDI got long-Covid from when I got Covid in 2020

Read from 369 of their posts and comments; links to the 107 this page draws on

Summary

A US retail worker got Covid in August 2020 and developed long Covid with pneumonia and lung fibrosis; December 2020 through 2021 was her worst period, with severe breathlessness. Steroids, nebulised bronchodilators and daily breathing exercises improved her lungs, and emoxypine helped some brain fog. She worked part-time in retail, but remained easily breathless.

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What they tried

What they credit

Oral prednisone / corticosteroids· Helped · main Mildronate· Helped Fluticasone nasal spray· Helped Hypertonic saline nebulizer· Helped Budesonide nebulized / inhaled· Helped Creon pancreatic enzymes· Helped Fatty fish / omega-3 rich diet· Helped Pacing· Helped Graded exercise / physical activity· Helped

Also tried

Emgality· Helped a lotCBD vape juice / full-spectrum CBD· HelpedSalt, fluids and electrolytes· Helped Potassium supplement· Helped Hydroxychloroquine / Plaquenil· Helped Sinus and tonsil surgery· Helped · wore off Iron supplements and Feraheme infusions· Helped Sublingual methylcobalamin and methylfolate· Helped Sublingual methylcobalamin and methylfolate· HelpedEmoxypine / Mexidol· HelpedKefir, kimchi and probiotics· Helped Azithromycin and other antibiotics· Helped D-Mannose· HelpedBreathing exercises and incentive spirometer· HelpedXanax· Helped Omeprazole· HelpedNSAIDs (Celebrex, naproxen, Advil, Aleve)· HelpedAmbien· HelpedCannabis edibles and smoked cannabis· HelpedMontelukast / Singulair· Helped Zyrtec and Benadryl· Helped Zyrtec and Benadryl· Helped Acupuncture· Helped Chinese herbal pills· Helped Paxlovid· Helped Breztri inhaler· HelpedAlbuterol inhaler / nebulizer· HelpedPerforomist / formoterol· HelpedZofran and promethazine· HelpedPsilocybin· Helped · wore off Ketogenic diet· Helped · wore off Low FODMAP diet· Helped Smaller more frequent meals· Helped Cold exposure / ice packs· Helped Vagus nerve maneuver / hard coughing· Helped Rest· Helped CBT· Helped Lymphatic massage· Helped Sinus rinses· HelpedNose cauterization· Helped · wore offZoloft· No change Buspar· No change Vitamin D· No change Iodine supplement· No change Propranolol· Worse Amitriptyline· Worse Trintellix / Brintellix· Worse Seroquel· WorseIpratropium / albuterol· WorseHydroxyzine· Not said Biocidin· Not said Klonopin· Not said Tylenol / paracetamol· Not said Metformin· Not said Immunoglobulin replacement therapy· Not said Trelegy inhaler· Not said Cytomel· Not saidMultivitamin and zinc· Not saidCOVID vaccination as treatment· Not said

Their words about each treatment

CBD vape juice / full-spectrum CBD · HelpedI use CBD vape juice ... It takes the edge off of the pain a bit In context ↗
Hydroxyzine · Not saidI've taken it before, it was a mild sleepy feeling In context ↗
Salt, fluids and electrolytes · HelpedWhen I'm having dizzy spells, I drink a mug of full sodium chicken broth, and that usually helps. In context ↗
Potassium supplement · HelpedMagnesium and potassium supplements (also to balance out the increased sodium) helped my leg cramps and spasms. In context ↗
Propranolol · WorseI couldn't handle propranolol. I wasn't able to get off of the couch without everything going black. In context ↗
Oral prednisone / corticosteroids · HelpedI have been on low dose oral prednisone since December of 2020. 10mg/day. In context ↗
Hydroxychloroquine / Plaquenil · HelpedI took it for lyme disease ... It helped my arthritis a bit, but not enough for the side effects. In context ↗
Sinus and tonsil surgery · HelpedOnce I recovered from the surgery, my sense of taste and smell were very much improved. Unfortunately, it didn't last. In context ↗
Iron supplements and Feraheme infusions · HelpedI actually needed iron (Feraheme) infusions last fall. The anemia was definitely contributing to my fatigue. In context ↗
Emgality · Helped a lotEmgality helped immensely In context ↗
Sublingual methylcobalamin and methylfolate · HelpedI do have much better absorption with sublingual methylcobalamin In context ↗
Emoxypine / Mexidol · Helpedemoxypine (Russian Mexidol 125mg once in the morning with breakfast) has been helpful In context ↗
Kefir, kimchi and probiotics · HelpedKefir ... helped my gut issues better In context ↗
Biocidin · Not saidIdk if the Biocidin helped or not In context ↗
Azithromycin and other antibiotics · HelpedI took azithromycin for its anti-inflammatory properties on respiratory tissue. 250mg every other day was the maintenance dose. In context ↗
D-Mannose · HelpedI use D-Mannose ... this helps my symptoms In context ↗
Breathing exercises and incentive spirometer · HelpedI bought an incentive spirometer ... It took about a year, but it helped my shortness of breath
Mildronate · HelpedI took Mildronate for 6 weeks starting in February of this year. 250mg one time in the morning. In context ↗
Amitriptyline · WorseIt made me very irritable ... I couldn't tolerate it in the end. In context ↗
Trintellix / Brintellix · Worsethis one made me sicker than any other antidepressant ever In context ↗
Xanax · HelpedI take Xanax ... allowing me to live a life resembling normal
Klonopin · Not saidThey insisted on "flush out periods" every 6 months to "reset my tolerance". It was pure hell In context ↗
Omeprazole · HelpedI use 40mg of omeprazole a day In context ↗
NSAIDs (Celebrex, naproxen, Advil, Aleve) · HelpedI used prescription Naproxen ... or Celebrex In context ↗
Tylenol / paracetamol · Not saidTylenol and Advil don't touch it. In context ↗
Ambien · HelpedI took it for about 5 years ... it did not leave me groggy feeling the next day In context ↗
Seroquel · WorseSeroquel and I did not agree, as in I fell asleep almost anywhere In context ↗
Zoloft · No changeMy anxiety did not respond to Zoloft or Buspar. In context ↗
Cannabis edibles and smoked cannabis · HelpedWith the lung issues, I switched to edibles. It does help my inflammation and joint/muscle pain. In context ↗
Fluticasone nasal spray · HelpedI used fluticasone nose spray, Zyrtec, and montelukast. I know it's helping because I feel worse if I miss a dose. In context ↗
Montelukast / Singulair · HelpedI notice my allergies and shortness of breath are worse if I miss a dose, so it must be helping. In context ↗
Zyrtec and Benadryl · HelpedI take 1/2 a Benedryl, Zyrtec, and Singular at night. I sleep through the night. In context ↗
Acupuncture · HelpedI saw an acupuncturist about 15 years ago ... It did help my joint pain, with relaxation, and sleep. In context ↗
Chinese herbal pills · HelpedI took specialty herbal pills ... It did help my joint pain ... Seemed to heal my gut lining. In context ↗
Metformin · Not saidI'm prescribed it for polycystic ovaries, I've taken it about 15 years now. I still got Covid and long Covid. In context ↗
Immunoglobulin replacement therapy · Not saidI started immunoglobulin replacement therapy in April of this year, and it's too soon to tell if it'll help. In context ↗
Paxlovid · HelpedPaxlovid was a real game changer ... my brain fog is better
Hypertonic saline nebulizer · HelpedI nebulize an ampule of hypertonic saline if I am noticing mucus in my cough In context ↗
Ipratropium / albuterol · WorseI tried ipratropium-bromide/albuterol ... it made my heart race, so I switched back to the Perforomist. In context ↗
Breztri inhaler · HelpedI use a Breztri inhaler instead of the nebulizer In context ↗
Trelegy inhaler · Not saidI was on Trelegy, then Breztri, along with albuterol for shortness of breath. In context ↗
Albuterol inhaler / nebulizer · HelpedI also use the albuterol whenever I am feeling extra short of breath. In context ↗
Perforomist / formoterol · HelpedFor my lungs healing from Covid pneumonia: oral prednisone, nebulized budesonide, perforomist, albuterol and doing my breathing exercises very often In context ↗
Budesonide nebulized / inhaled · HelpedThe inhaled steroids helped over time. In context ↗
Creon pancreatic enzymes · HelpedI took Creon (pancreatic enzymes) for a year to let my pancreas "rest" and my gut "heal" In context ↗
Zofran and promethazine · HelpedI also have promethazine suppositories on hand, that's a really good anti-emetic In context ↗
Cytomel · Not saidI'm also on Cytomel for my thyroid. In context ↗
Psilocybin · HelpedMy depression and anxiety were cured for about a week. In context ↗
Ketogenic diet · HelpedI also couldn't stay on it long term, but it helped my shortness of breath a bit once I got over the "keto flu" phase. In context ↗
Low FODMAP diet · Helpedlow FODMAP helped quite a bit. In context ↗
Fatty fish / omega-3 rich diet · HelpedI added more fatty fish into my diet ... my lung function has been improving In context ↗
Smaller more frequent meals · HelpedI eat 5-6 small meals/snacks a day instead of 2-3 big meals. In context ↗
Cold exposure / ice packs · HelpedTaking cold showers or baths ... Popsicles and putting ice packs on my pressure points. In context ↗
Vagus nerve maneuver / hard coughing · Helpeda few hard coughs helps the chest pain and slows my heart down. In context ↗
Pacing · HelpedI think learning to pace yourself with physical activity ... is important. In context ↗
Graded exercise / physical activity · HelpedExercise helped me, but I had to build up, extremely slowly In context ↗
Rest · HelpedI took a proper work leave, rested, ate very healthy, and it did not add on to my existing long haul. In context ↗
CBT · HelpedI've done CBT, and it helped immensely In context ↗
Lymphatic massage · HelpedI just got the lymphatic massage, but it helped bloodflow ... which sped up healing. In context ↗
Sinus rinses · HelpedI did those both times post-op, and they help me get my sense of smell back. In context ↗
Nose cauterization · HelpedWhen she'd cauterize my nose with silver nitrate, my taste and smell would be better for a few days In context ↗
Vitamin D · No changeI started with 3000IU and was still low on my bloodwork, so I went up to 5000IU. In context ↗
Iodine supplement · No changeI've been taking an iodine supplement ... I don't notice any difference in my symptoms. In context ↗
Multivitamin and zinc · Not saidAside from a multivitamin, I also take extra vitamin D, b-complex ... and zinc. In context ↗
COVID vaccination as treatment · Not saidMy lyme disease flares up when I get the vaccine or boosters. In context ↗

Approaches: Other drugs and medicines · 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. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
August 21, 2020	Covid-19 infection with double pneumoniaI was so short of breath, I couldn't speak a full sentence in one breath In context ↗	Severe
December 2020	chest scans worse, long Covid began, out of workmy chest CT scan was much worse in December of 2020 In context ↗	Severe
spring to summer of 2021	worst period, two hours of nebuliser treatments a day, mostly houseboundMy worst time was spring to summer of 2021 In context ↗	Severe
November 2021	started part-time retail work again after a year offI was able to start working part time in November of 2021 In context ↗	Mild
January 2022	Omicron reinfection, six weeks unable to workIn January, I stayed quite sick/unable to work for 6 weeks. In context ↗	Moderate
July 2022	third infection (BA.5) treated with Paxlovid, brain fog liftedI actually feel better since the Paxlovid, my brain fog is better. In context ↗	Mild	Paxlovid / nirmatrelvir
January 2024	lung function outstanding, smell and taste returning, working part timemy PFTs are outstanding, no longer need to follow up with the transplant pulmonologist In context ↗	Mild
May 2025	slowly better, no reinfection since 2022It has gotten better with time. In context ↗	Mild

Adverse events

Hydroxyzine (Atarax, Vistaril)“it was a mild sleepy feeling, less than Benedryl or cold medicine.” In context ↗ Side effects
Hydroxychloroquine / Plaquenil“I stopped taking it because my GFR was down” In context ↗ Liver or kidney problems
Hydroxychloroquine / Plaquenil“I was always nauseous.” In context ↗ Gut side effects
Sinus, jaw and tonsil surgery“I missed a hydrocodone dose and ended up in the ER on Christmas for stronger pain meds” In context ↗ ER visit
COVID vaccination as treatment“My lyme disease flares up when I get the vaccine or boosters.” In context ↗ Autoimmune or inflammatory flare
Corticosteroid pulses“opportunistic infections” In context ↗ Side effects
Corticosteroid pulses“increased fatigue from tapering the dose down” In context ↗ Withdrawal problems
“it feels so huge, and I can't close my mouth over it, so I don't sleep as well with it.” In context ↗ Insomnia from treatment
“Some of the bronchodilators can definitely make your heart race.” In context ↗ Heart rhythm problems
Diphenhydramine (Benadryl)“A whole Benedryl made me too groggy to function the next morning.” In context ↗ Side effects
Azithromycin (Zithromax, Z-Pak)“The only gut issues I've had since Covid were from taking antibiotics.” In context ↗ Gut side effects
Meldonium (Mildronate)“The only side effects I noticed was a flushing feeling, and my face and chest would turn red like I was blushing.” In context ↗ Side effects
Iron infusion / ferritin repletion“The infusions (mine was called Feraheme) caused some headaches as a side effect.” In context ↗ Side effects
Amitriptyline (Elavil)“It made me very irritable... I couldn't tolerate it in the end.” In context ↗ Mood or psychiatric effects
Vortioxetine (Trintellix)“I was still violently projectile vomiting every single night.” In context ↗ Gut side effects
Propranolol (Inderal)“I was prescribed propranolol, but could not tolerate it. Ends up asthmatics should not take beta blockers, they can make shortness of breath worse.” In context ↗ Made symptoms worse
COVID vaccination as treatment“I got a booster vaccine dose today, and was waiting my 15 minutes, started getting that headache again” In context ↗ Side effects
Corticosteroid pulses“I have had more depression and mood swings” In context ↗ Mood or psychiatric effects
COVID vaccination as treatment“I got a fever the first night... My arm is a bit sore still.” In context ↗ Side effects
Amitriptyline (Elavil), Vortioxetine (Trintellix), Sertraline (Zoloft)“I do get the muscle rigidity and sweating.” In context ↗ Side effects
Amitriptyline (Elavil), Vortioxetine (Trintellix), Sertraline (Zoloft)“Plus extreme agitation that makes me want to crawl out of my skin.” In context ↗ Mood or psychiatric effects
Amitriptyline (Elavil), Vortioxetine (Trintellix), Sertraline (Zoloft)“they made me sleepy and lethargic.” In context ↗ Side effects
“the bronchodilator in them can make your heart race.” In context ↗ Heart rhythm problems
Quetiapine (Seroquel)“Seroquel and I did not agree, as in I fell asleep almost anywhere, even busy public places (scary).” In context ↗ Side effects
Diphenhydramine (Benadryl)“I was taking Benedryl to sleep, and now if I don't take it, I am still wide awake at 4am” In context ↗ Withdrawal problems
Corticosteroid pulses“also make me more prone to things like bronchitis and thrush” In context ↗ Side effects
Corticosteroid pulses“the treatment (long term prednisone and inhaled steroids) made me immunosuppressed.” In context ↗ Side effects
Corticosteroid pulses“My treatments and being inactive made me put on 40lbs... the prednisone made my face round” In context ↗ Side effects
Paxlovid / nirmatrelvir“That Paxlovid taste was so gross.” In context ↗ Side effects
“It hurt and made me cough” In context ↗ Side effects
“Does the ipratropium make your heart race? It did mine.” In context ↗ Heart rhythm problems
Corticosteroid pulses“I got oral thrush even though I rinsed my mouth after using it.” In context ↗ Side effects
Paxlovid / nirmatrelvir“It caused some nausea” In context ↗ Gut side effects
Corticosteroid pulses“I was on prednisone for a year and a half... and maintenance prophylactic antibiotics for a year, so my stomach/GI tract was torn up.” In context ↗ Gut side effects
“the washes with alcohol burned my irritated mouth too much.” In context ↗ Side effects
Propranolol (Inderal)“I wasn't able to get off of the couch without everything going black... I needed to stop the propranolol, stay in bed and rest, and drink lots of salty broth to reverse its effects.” Low blood pressure or fainting
Corticosteroid pulses“being on prednisone indefinitely started to do some damage, like wounds would not heal properly, and I was getting opportunistic infections.” In context ↗ Side effects
Azithromycin (Zithromax, Z-Pak)“I was also on azithromycin and prednisone for a year and a half after my first time with Covid. I think that tore up my stomach even worse.” In context ↗ Gut side effects
Radical rest“Bed rest gave me a lot of opportunistic infections like UTIs and made my muscle pain worse. Plus the muscle atrophy and blood clots.” In context ↗ Side effects
Sinus, jaw and tonsil surgery“Intense bugs crawling on you and pins and needles feeling... it was about all I could focus on when they were growing back.” In context ↗ Nerve pain
“I feel a bit groggy even with the immediate release version.” In context ↗ Side effects
Metformin“it causes a lot of GI distress, diarrhea... For me, those only lasted a few months while my body adjusted and recurred when I increased doses.” In context ↗ Gut side effects
COVID vaccination as treatment“I feel like I just got punched in the arm.” In context ↗ Side effects
Propranolol (Inderal)“I wasn't able to get off of the couch without everything going black... It can make allergies and asthma worse.” In context ↗ Low blood pressure or fainting

Symptoms mentioned

Anxiety & low mood Brain fog Flu-like symptoms Hair loss Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Loss of smell or taste Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Tinnitus Vision problems

Their words about their symptoms

Post-exertional malaiseThen I overdo it on good days, and need to spend the next day in bed. In context ↗
Brain fogThat is what I call the brain fog. In context ↗
POTS & dysautonomiaWhen I stand up, sometimes I have to immediately sit back down again. In context ↗
Mast cell (MCAS) & allergiesmy allergies have gotten worse, so 5-10mg of Benedryl at night has helped me In context ↗
Sleep problemsI've been on and off of it for a few years now for my insomnia. In context ↗
Pain & fibromyalgiamy chest, lungs, and joints hurt so much In context ↗
Headaches & migraineI get migraines, I get tension headaches In context ↗
Light & noise sensitivityit was like a sensory overload In context ↗
Heart symptoms & palpitationsMy resting heart rate is in the 120's. In context ↗
Muscle weaknessit felt like the muscles were so tired In context ↗
Neuropathy & tinglingI still have pins and needles in my extremities In context ↗
Anxiety & low moodMy depression was well in remission for over 5 years until I got Covid. In context ↗
Flu-like symptomsI got a fever, I never get fevers In context ↗
Loss of smell or tasteI mostly lost my sense of taste and smell for about 2 years In context ↗
TinnitusI'm 2 years out, and it is mostly gone. In context ↗
Temperature regulationThe heat makes symptoms worse for me. In context ↗
Vision problemsLuckily the vision problems have gotten better for me with time In context ↗
Hair lossmy hair slowly grew back (it had thinned out when I was first sick) In context ↗

Severe long COVID breathlessness, now somewhat better with breathing exercises

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What they tried

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Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

Also tried

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Symptoms mentioned

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