Long COVID
Moderate → somewhat betterIll 2.5 years before improving or writingNeeds ongoing treatment
Breathless with long COVID and chest pain at 28 months, now somewhat better
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Jul 2022
In their words
- Condition: Long COVID
March will be two years since I was infected with Covid and every breath I take is still ice cold
In context ↗ - At worst: Moderate
Unsteady on my feet--Difficulty walking my dog I feel as if I'm going to fall over and often turn around after a few blocks
In context ↗ - Now: Somewhat better
I have some improvement and some lingering unresolved medical concerns.
In context ↗ - Began after: COVID
Had COVID-19 in March 2020
In context ↗
Read from 13 of their posts and comments; links to the 10 this page draws on
Summary
A California long-hauler infected with COVID-19 in March 2020 was still breathless with compromised lungs 28 months later, after earlier severe wheezing, crushing chest pain and unsteady walking. A Zyrtec/Pepcid trial brought slight improvement that did not last, inhalers and supplements were tried, and two Pfizer doses left the breathlessness unchanged. By 2022 chest pain had vastly improved but every breath still felt ice cold; $10,000 went on trying to figure out what was wrong.
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What they tried
What they credit
Also tried
lidocaine pain patches· Helpednasal irrigation machine· HelpedPepcid· No changeAllega generic· No changeair purifier, UV light and air filters· No changedecongestants, saline spray, Xclear· No changePfizer vaccine· No changevagus nerve humming and throat neck tapping· No changegeneric inhaler for Symbicort· Not saidSingulair generic, Montelukast· Not saidvitamin C· Not saidzinc· Not saidvitamin D3· Not saidmultivitamin· Not saidred light therapy machine· Not saidwalking a mile three times a week· Not saidbreathing exercises· Not saidword exercises· Not saidyoga, stretching and light weight lifting· Not saidhot baths· Not saidfoot reflexology· Not saidfoam roller and tennis ball· Not saidbiotin· Not saidB12· Not said
Their words about each treatment
- Pepcid · No change
It didn't do anything for me since I was sick in March and April, so I stopped.
In context ↗ - lidocaine pain patches · Helped
I've used lidocaine pain patches that were prescribed to me that I cut and put across my chest and down my sternum which helped a little but not much
In context ↗ - Allega generic · No change
Prescribed Allega generic 2 weeks ago. No Change in my symptoms
In context ↗ - generic inhaler for Symbicort · Not said
My wheezing is so severe I started using the inhaler again
In context ↗ - Singulair generic, Montelukast · Not said
went back on the Singulair generic, Montelukast & The generic inhaler for Symbicort
In context ↗ - vitamin C · Not said
Taking vitamin C, zinc, vitamin D3 and a multivitamin daily.
In context ↗ - red light therapy machine · Not said
I just bought a red light therapy machine that I've only used once
In context ↗ - air purifier, UV light and air filters · No change
I am using an air purifier --nothing is working
In context ↗ - gluten-free and sugar-free diet · Helped
I just gave up sugar for Lent and I'm going to try and go gluten-free again which is when I feel optimal.
In context ↗ - walking a mile three times a week · Not said
I'm going to try and walk a mile three times a week and increase it as I feel better per the doctor
In context ↗ - nasal irrigation machine · Helped
I'm up to using a nasal irrigation machine twice a day which seems to be working at least for the head congestion
In context ↗ - decongestants, saline spray, Xclear · No change
nothing works not decongestants, not Saline spray, not Xclear
In context ↗ - Zyrtec/Pepcid regimen · Helped
I started on the Zyrtec/Pepcid regimen about a week ago and have seen some slight improvement.
In context ↗ - Pfizer vaccine · No change
Had my second vaccine three weeks ago tomorrow thought I would be better I'm really bummed I'm not.
In context ↗ - breathing exercises · Not said
I do breathing exercises for my very compromised lungs
In context ↗ - word exercises · Not said
a lot of word exercises to keep the brain fog away
In context ↗ - yoga, stretching and light weight lifting · Not said
For the exhaustion and weakness I do some yoga, stretching and light weight lifting.
In context ↗ - vagus nerve humming and throat neck tapping · No change
do some vagus nerve humming and throat neck tapping -nothing seems to work in that department
In context ↗ - hot baths · Not said
I also try to take hot baths and do some foot reflexology just to keep my heart and body calm.
In context ↗ - foam roller and tennis ball · Not said
I also roll on a foam roller and sit on a tennis ball just to loosen knots in my back and butt
In context ↗ - biotin · Not said
I'm taking biotin for hair loss, Vitamin C, vitamin D3, Zinc and B12.
In context ↗
Approaches: H1 antihistamines · H2 blockers · Diet
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 |
|---|---|---|---|
| March 2020 | COVID-19; chest pain, night sweats, phlegm and headachesHad COVID-19 in March 2020In context ↗ | Moderate | |
| September 2020 | wheezing and breathlessness set in and worsenedI only developed it in the summer, it's getting much worse not better.In context ↗ | Moderate | |
| February 2021 | worst breathing, 2-3 hours of broken sleep a night, unsteady walkingSEVERE Wheezing & Struggling For every breath.In context ↗ | Moderate | |
| March 2021 | slight improvement in breathing and sleep on the Zyrtec/Pepcid regimenI started on the Zyrtec/Pepcid regimen about a week ago and have seen some slight improvement.In context ↗ | Moderate | Famotidine (Pepcid) |
| January 2022 | chest pain vastly improved, some concerns unresolvedI have some improvement and some lingering unresolved medical concerns.In context ↗ | Moderate | |
| June 2022 | daily breathing and word exercises, yoga, 30 push-ups, walking the dog twice a day, still windedI’m forcing myself to walk the dog twice a day like I always did and sometimes I have to stop and get winded and continue on.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“28 hours later only side effect to shot 1 of Pfizer is a sore arm and it's not that bad.” In context ↗ Side effects
- COVID vaccination as treatment“I had a headache, chills from 1 AM to 3 AM and a headache an arm pain the following day still have some arm pain and that is my only continued side effect was exhausted the day after the vaccine” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTemperature regulation
Their words about their symptoms
- Breathlessness
I do breathing exercises for my very compromised lungs
In context ↗ - Heart symptoms & palpitations
This has improved greatly but I still have chest pain
In context ↗ - Pain & fibromyalgia
Calf cramps / toe cramps
In context ↗ - Gut problems
Constipation & pebble poop for 11 months
In context ↗ - Sleep problems
Sleeping 2-3 hours a night (not in a row)
In context ↗ - Neuropathy & tingling
Tingling under left scapula on back & under nose above lip.
In context ↗ - POTS & dysautonomia
I feel as if I'm going to fall over
In context ↗ - Anxiety & low mood
having a panic attack
In context ↗ - Flu-like symptoms
Swollen lymph nodes in throat
In context ↗ - Loss of smell or taste
Lost to taste For the entire month of April 2020
In context ↗ - Temperature regulation
Night sweats just started again this week
In context ↗ - Mast cell (MCAS) & allergies
2nd ENT doctor said I do after putting scope up my nose and down my throat
In context ↗ - Brain fog
a lot of word exercises to keep the brain fog away
In context ↗ - Muscle weakness
For the exhaustion and weakness I do some yoga
In context ↗ - Hair loss
I'm taking biotin for hair loss
In context ↗
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