Long COVID in bed 20 hours a day, much better after rest and stopping pushing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Nov 2021
In their words
- Condition: Long COVID
My belief that I am a Longhauler is purely based on the similarity of my symptoms to other Longhaulers
In context ↗ - At worst: Severe
I laid in bed 20/24 hours a day and still did not have an ounce of energy.
In context ↗ - Now: Much better
I don’t really think there is a solid percentage that I am at, it fluctuates so I would give a range of 70% at my lowest and 90% at my best.
In context ↗ - Began after: COVID
It is possible I caught Covid at some point - and I believe I did - but there is no proof.
Read from 9 of their posts and comments; links to the 4 this page draws on
Summary
Male athlete of 21 began symptoms he attributed to long COVID in late October 2020 with palpitations, POTS, light sensitivity, brain fog and neuropathy, and by winter was in bed 20 hours a day. Pushing exercise set him back for weeks. From month 10 he stopped pushing, rested and tended his mental health, and symptoms faded one by one. A year later he rated himself 70-90% of normal, with lingering tinnitus, chest discomfort and PEM if he overdid it.
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What they tried
What they credit
Also tried
Their words about each treatment
- topirimate · No change
My neurologist put me on 25mg topirimate for 3 months now but it doesn’t seem to help.
In context ↗ - vitamin D supplements · Not said
all I can say I consistently stuck with was taking vitamin D supplements since I was found to be deficient from a blood test
In context ↗ - pushing myself / exercising · Much worse
I pushed myself believing I was at the end of the road. ... I suffered terribly from symptoms that would hit me 24 hours later.
In context ↗ - rest · Helped a lot
I decided to hang my gloves and rest, take care of my body and mind and accept life for what it is.
In context ↗ - meditation · Helped
I picked up meditation
In context ↗ - time · Helped a lot
time and rest are your friends
In context ↗ - exercise between 20%-40% of my maximum · Helped
I think a level of exercise between 20%-40% of my maximum is actually good for me at the moment.
In context ↗
Approaches: Mind-body practices · Radical rest
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 |
|---|---|---|---|
| late October 2020 | long COVID symptoms begin after workoutsOut of the blue last year in late October, I started having weird feelings after working out.In context ↗ | Mild | |
| December 2020 to July 2021 | lowest point, in bed almost all dayI laid in bed 20/24 hours a day and still did not have an ounce of energy.In context ↗ | Severe | |
| months 6-8 (2021) | crashed for three weeks after pushing exerciseI would push myself too far, then have to lay in bed for three weeks due to another wave of symptoms, then repeat.In context ↗ | Severe | |
| August 2021 | rested, meditated and stopped pushingThe breakthrough really happened in August for me (Month 10).In context ↗ | Moderate | Radical rest |
| October 2021 | setback after playing basketballI unexpectedly found myself playing basketball and got a little too competitiveIn context ↗ | Moderate | |
| 2021-11-12 | much improved but not fully recoveredI would give a range of 70% at my lowest and 90% at my best.In context ↗ | Mild |
Adverse events
- Everyday exercise and activity“I would push myself too far, then have to lay in bed for three weeks due to another wave of symptoms” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
post exertional malaise that only gets bad if I really push myself
In context ↗ - POTS & dysautonomia
The first things to fade away were my Panic attacks and POTs
In context ↗ - Light & noise sensitivity
While my light sensitivity has improved from being completely unbearable
In context ↗ - Headaches & migraine
my most debilitating symptom at this point is cluster headaches
In context ↗ - Heart symptoms & palpitations
The things that bother me now are occasional twitching, some chest discomfort, tinnitus
In context ↗ - Neuropathy & tingling
I felt tingling sensations on my arms and legs, and sometimes a degree of feeling loss.
In context ↗ - Anxiety & low mood
I had regular panic attacks.
In context ↗
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