Bedbound with long COVID in crash cycles, much better with pacing and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 months
- Last post
- Jun 2023
In their words
- Condition: Long COVID
I’m 16 months into Long Covid, & definitely had a period of high anxiety, then depression.
In context ↗ - At worst: Severe
Crash, bed bound & return/ renewal of different symptoms. Rinse and repeat that for 12 months.
In context ↗ - Now: Much better
Getting better. Don’t have chest pains anymore, which is amazing. Brain is way more functional, like I’m back in the room more often.
In context ↗ - Began after: COVID
I’m 16 months into Long Covid
Read from 16 of their posts and comments; links to the 12 this page draws on
Summary
Bramble 91292 became ill with long COVID in 2020 and spent the first year in repeated cycles of crashes that left them bed bound. POTS, dysautonomia and MCAS were diagnosed later. Serious pacing and rest ended the crash cycle and they returned to work one day a week, using earplugs when out; a first AstraZeneca jab caused horrendous side effects. By mid-2023 chest pains had gone and thinking was clearer; in early 2022 stairs still left them breathless.
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What they tried
What they credit
Also tried
Their words about each treatment
- counsellor · Not said
I decided today to get a counsellor to help me deal with the mental health impact of being so ill for so long.
In context ↗ - AstraZeneca vaccine · Helped
the second shot I had no reaction at all. My tachycardia seems to have cleared right up.
In context ↗ - over the counter antihistamine / heavy duty anti-histamines · Not said
try an over the counter antihistamine, that’s where I started. When I finally saw a long Covid doc, they put me on H2 blockers & heavy duty anti-histamines.
In context ↗ - H2 blockers · Helped
they put me on H2 blockers ... a course of histamine blockers. Not anti-histamine. Sorted it out.
- heavy migraine & pain killers · Helped
Got prescribed heavy migraine & pain killers, which did touch the edges.
In context ↗ - will power 'just get through it' · Much worse
I tried the whole Will power ‘just get through it’ & it led to some serious health consequences.
In context ↗ - medical journal and fit bit watch · Helped
I started keeping a medical journal ... I wear one of those fit bit watches, so I know when I’m feeling weird, it’s my heart rate soaring.
In context ↗ - pacing · Helped
Pacing is key. Mega frustrating, but it’s the only thing that has helped with slow recovery.
In context ↗ - Vitamins · Not said
Vitamins, rest, hydration like your life depends on it
In context ↗ - hydration / 3L of water a day · Not said
Drink 3L of water a day. ... resting & hydration are the most important things right now.
Approaches: 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. 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 |
|---|---|---|---|
| 2020 | Long COVID after first Covid infection; still trying to push through workI’m 20 months since first Covid infection, & went from gym/weightlifting/working 2 jobs etc to totally flat out.In context ↗ | Mild | |
| 2020–2021 | Repeated cycles of crashes leaving them bed boundCrash, bed bound & return/ renewal of different symptoms.In context ↗ | Severe | |
| 2020–2021 | relapses after thinking they were recovering and doing moreI had too many relapses by thinking I was recovering, & then would set myself back.In context ↗ | Not stated | |
| September 2021 | twelve weeks without a crash; back to work one day a weekSo, im on week 12 with no crash. I take things frustrating slow. Some serious pacing.In context ↗ | Mild | Pacing and the energy envelope |
| January 2022 | finally getting better; still not well enough for the gymI’m not healthy enough to go to gym yet, but it’s nothing like it was.In context ↗ | Mild | Pacing and the energy envelope |
| June 2023 | chest pains gone and thinking much clearerGetting better. Don’t have chest pains anymore, which is amazing. Brain is way more functional, like I’m back in the room more often.In context ↗ | Mild | Pacing and the energy envelope |
Adverse events
- COVID vaccination as treatment“My first jab had horrendous side effects, as I was pretty ill with Long Covid already, the second AZ jab, no reaction.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
i still have the occasional bad day if I overdo it
In context ↗ - Brain fog
I literally had nothingness in my head for far too long.
In context ↗ - POTS & dysautonomia
That’s when the dysautonomia hit.
In context ↗ - Mast cell (MCAS) & allergies
It was diagnosed as MCAS.
In context ↗ - Heart symptoms & palpitations
Don’t have chest pains anymore, which is amazing.
In context ↗ - Breathlessness
I still get breathless going up stairs & walking
In context ↗ - Tinnitus
tachycardia, pots, MCAS, orthotic intolerance, tinnnitus
In context ↗ - Anxiety & low mood
definitely had a period of high anxiety, then depression
In context ↗ - Light & noise sensitivity
have to were earplugs and ear muffs (pelton) when I do out
In context ↗ - Headaches & migraine
Was diagnosed with vestibular migraines.
In context ↗
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