Long COVID
Severe → much betterIll 4 months before improving or writing
Bedbound for months with long COVID, now much better on a beta blocker
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 months
- Last post
- Dec 2021
In their words
- Condition: Long COVID
Covid long hauler here.
In context ↗ - At worst: Severe
I was essentially bed bound and unable to walk for 2 mins at a time
In context ↗ - Now: Much better
I was about 85% better. All of my symptoms had improved SIGNIFICANTLY.
In context ↗ - Began after: COVID
I had covid in Sept 2020, I was very sick for 6 weeks, I had covid pneumonia
Read from 38 of their posts and comments; links to the 22 this page draws on
Summary
Pelican 86219 caught COVID in September 2020 and was bed-bound for months with pneumonia, POTS, neuropathy and brain fog. Physical therapy, a beta blocker, gabapentin, steroids and diet changes helped slowly; a reinfection in January 2021 brought a jump to about 85%. By October 2021 they were better but not fully, with lingering exercise intolerance and trouble on standing. The Pfizer vaccine made them feel worse for about 10 days after the first shot and until the second, with no overall change.
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What they tried
What they credit
Also tried
prednisone· HelpedFlovent steroid inhaler· Helpedmelatonin· Helpedhigh salt diet and electrolyte hydration mixes· Helpedcompression stockings· Helpedgabapentin· Helpedpacing· Helpedtime· HelpedAllegra and Zyrtec· No changeAllegra and Zyrtec· No changelow histamine diet· No changeAdvair· WorsePfizer COVID vaccine· Worsemontelukast· Not saidmultivitamin· Not saidextra vitamin D· Not said
Their words about each treatment
- montelukast · Not said
I have been taking montelukast for 6yrs for my asthma management
In context ↗ - prednisone · Helped
I don't have much SOB problems after the prednisone
In context ↗ - Flovent steroid inhaler · Helped
I have also been taking a steroid inhaler for about 6 weeks that has made my coughing and asthma irritation post-covid 100 times better.
In context ↗ - beta-blocker / propanolol · Helped
I have been on a beta-blocker as well for the high heart rate for 4wks that has improved that 'heart going to jump out of the chest feeling' and chest pain.
In context ↗ - Advair · Worse
I did have a few other prescriptions that made stuff worse, like advair
In context ↗ - melatonin · Helped
have you tried melatonin? that's what I take to help me sleep
In context ↗ - physical therapy (modified CHOP protocol) · Helped a lot
I go to physical therapy twice a week for the fatigue and increasing exercise tolerance.
In context ↗ - diet change (small meals, no/limited processed food) · Helped
I had to change my diet(high salt, small meals, no/limited processed food)
In context ↗ - high salt diet and electrolyte hydration mixes · Helped
they have me on a high salt diet, basically you need to take in like 200% of a regular daily sodium.
In context ↗ - compression stockings · Helped
They also told me to wear compression stockings or socks, which helps both with the tingles and the pooling
In context ↗ - gabapentin · Helped
I had migraines for 5 months and they were mostly gone within a week of starting Gabapentin
In context ↗ - Allegra and Zyrtec · No change
They also had me try Allegra, then Zyrtec ... I tried both for about 6 weeks, no changes, so they took me off them because both caused stomach issues for me.
In context ↗ - low histamine diet · No change
Taking vitamins and eating healthy, low histamine diet
In context ↗ - Pfizer COVID vaccine · Worse
I got the 1st shot of the pfizer vaccine on Friday and felt worse for a few days
In context ↗ - multivitamin · Not said
a daily well balanced multivitamin and some extra vitamin d
In context ↗ - extra vitamin D · Not said
some extra vitamin d (but I'm chronically deficient, pre covid)
In context ↗ - pacing · Helped
You have to pay attention to your activities, pace yourself heavily
In context ↗ - time · Helped
the only thing that will 'cure' us is time and PT
In context ↗
Approaches: Beta-blockers · Diet · Physiotherapy and rehab
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| September 2020 | COVID-19 with pneumonia, hospital stay, bed-boundI was very sick for 6 weeks, I had covid pneumonia, severe symptoms, and was admitted to the hospital at some point for a 2 day stay.In context ↗ |
| around January 2021 (month 4) | slow climb from about half of former selfI was at about 50% of my former self until about month 4In context ↗ |
| January-February 2021 | jump after COVID reinfectionabout a week after catching it....I was about 85% betterIn context ↗ |
| April 2021 | felt worse for about 10 days after first Pfizer shotI felt like absolute shit for 10 days post shot 1In context ↗ |
| October 2021 | better but not fully, off most medicationsit is better for sure, not 100% but betterIn context ↗ |
Adverse events
- Fluticasone / salmeterol (Advair, Wixela)“I did have a few other prescriptions that made stuff worse, like advair 😬.” In context ↗ Made symptoms worse
- Fexofenadine (Allegra), Cetirizine (Zyrtec)“I tried both for about 6 weeks, no changes, so they took me off them because both caused stomach issues for me.” In context ↗ Gut side effects
- Corticosteroid pulses“The Prednisone in particular makes me feel very hungry all the time” In context ↗ Side effects
- Corticosteroid pulses“being on high dose steroids for months, combined with basically being bed ridden and on a high salt diet caused me to gain weight.” In context ↗ Side effects
- COVID vaccination as treatment“I felt like absolute shit for 10 days post shot 1 and then still felt worse all the way up until shot 2 yesterday.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“when ramping up exercise my brain fog/cognitive issues came back really bad and we had to tone it down for a few weeks” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“I had headaches for awhile, that got better, and then came back everytime I pushed too far with exercise.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
things still had to gradually ramp up or else I would hit a wall and be in pain/fatigued for days
In context ↗ - Brain fog
I had bad brain fog for several months to the point I'd forget where I lived
In context ↗ - POTS & dysautonomia
still have POTS/dysautonomia and a few other things
In context ↗ - Heart symptoms & palpitations
my HR was 145-165 just standing up and moving around
In context ↗ - Pain & fibromyalgia
my fatigue, exercise tolerance, muscle pain, etc has been better
In context ↗ - Headaches & migraine
I had migraines for 5 months and they were mostly gone within a week of starting Gabapentin
In context ↗ - Neuropathy & tingling
I also have small fiber neuropathy from covid
In context ↗ - Breathlessness
I coughed and had trouble breathing until March 2021
In context ↗ - Flu-like symptoms
the post nasal drip/sore throats are infrequent
In context ↗ - Sleep problems
causes the fatigue, brain fog, muscle pain, trouble sleeping
In context ↗ - Vision problems
I still get the occasional migraine and visual snow
In context ↗
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