Bedbound with long COVID, now about 50% better with pacing and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- Aug 2024
In their words
- Condition: Long COVID
I've been disabled by ME/CFS type long covid for 2 years and 4 months now.
In context ↗ - At worst: Severe
Earlier into my LH I was bedridden or housebound .
In context ↗ - Now: Somewhat better
Same , I'm 2 years and 6 months. Also, about 50% better and still have debilitating days of fatigue and mental exhaustion.
In context ↗
Read from 59 of their posts and comments; links to the 29 this page draws on
Summary
He caught COVID in January 2022 as a competitive bodybuilder and process operator, and became bedbound with PEM, brain fog, muscle weakness and dysautonomia. He credits time, pacing, rest and a clean diet; supplements and testosterone made no difference. He improved to 1,000-4,000 steps a day but still could not work, about 50% better at two and a half years. A reinfection at one year did not worsen him.
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What they tried
What they credit
Also tried
Their words about each treatment
- propranolol · Not said
I take 50mg a day , 42m.
In context ↗ - anabolic steroids · Worse
I know from experience and most of the time you feel worse on them.
In context ↗ - testosterone replacement (TRT) · No change
I've adjusted my dosage to see if it would help and I've noticed no difference in long haul symptoms.
In context ↗ - clomid · Not said
From my experience with clomid , I would never use it by itself as a HRT protocol.
In context ↗ - vitamin C · No change
I was already taking vitamin C , d3 , zinc and b12.
In context ↗ - b12 shots · No change
just typical vitamins and b12 shots. Nothing made a big difference.
In context ↗ - clean diet / nutrient-dense whole foods · Helped
Rest , pacing and keeping my diet clean has helped me the most.
In context ↗ - low histamine diet · No change
I followed the low histamine diet for about 10 months . At that point, I started reintroducing foods.
In context ↗ - graded exercise therapy / light training · Worse
I even tried to just do push-ups and standing squats in the beginning and it made the fatigue so bad I couldn't get out of bed.
In context ↗ - pacing · Helped
Pacing is the main thing that has helped me.
In context ↗ - time · Helped
Time and pacing has been the only thing that has helped.
In context ↗ - cold showers / keeping cool · Helped
The only thing that seems to help me is keeping my body cool , like taking cold showers and staying in the A/C.
In context ↗ - niacin (nicotinic acid) · Worse
I had a horrible experience at only a 50mg dose. I'll never touch that stuff again!
In context ↗ - zyrtec · Helped
I tried it in the beginning but had better luck with zyrtec.
In context ↗ - Zpack (azithromycin) · Not said
Azithromycin, no issues
In context ↗ - prednisone · Not said
My primary care Dr prescribed me a Zpack and prednisone for this round of covid.
In context ↗ - keto · No change
like keto or intermediate fasting but I've never had any luck with them.
In context ↗
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. The chart starts 2 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| February-March 2022 | bedridden/housebound early in long haulEarlier into my LH I was bedridden or housebound .In context ↗ | Severe | |
| April 2022 | about 1,000 steps a day, PEM from errandsI'm only able to get about 1000 steps a day and PEM can be set off by trip to the grocery store , dr visits , anything stressful.In context ↗ | Severe | |
| November 2022 | up to about 2,000 steps a dayAfter 10 months I'm up to an average of 2,000 steps per day.In context ↗ | Moderate | Pacing and the energy envelope |
| December 2022 | short daily walks, caring for his fatherI've also started taking 10 min walks 5 days a week.In context ↗ | Moderate | Pacing and the energy envelope |
| February 2023 | COVID reinfection, symptoms slightly improvedthe second one so far hasn't made me worse. In fact, I've had some improvement in my symptoms.In context ↗ | Moderate | |
| August 2023 | driving, shopping, 1,000-4,000 steps, still not workingBut I've gained a lot back, I can drive now with no issues , walk 1000 to 4000 steps a day depending on how I feel.In context ↗ | Moderate | Pacing and the energy envelope |
| July 2024 | about 50% better, still debilitating daysI'm 2 years and 6 months. Also, about 50% better and still have debilitating days of fatigue and mental exhaustion.In context ↗ | Moderate |
Adverse events
- Propranolol (Inderal)“Only time I had an issue was when it dropped into the low 40s I had some dizziness.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM can be set off by trip to the grocery store , dr visits , anything stressful.
In context ↗ - Brain fog
I still have brainfog, just not as bad.
In context ↗ - Muscle weakness
The weakness in my legs is still present .
In context ↗ - Heart symptoms & palpitations
My heart rate seems to be back to normal since March.
In context ↗ - POTS & dysautonomia
My current LH condition includes fatigue, brainfog , PEM , muscle weakness, and dysautonomia as my main symptoms.
In context ↗ - Temperature regulation
Still dealing with heat intolerance, but it had eased up slightly.
In context ↗ - Headaches & migraine
I always have some pressure in my head, but it's tolerable as long as I'm not overdoing it.
In context ↗ - Vision problems
I'm 7 months post covid infection and have had my eye issues since the beginning and it has gotten a little better.
In context ↗ - Light & noise sensitivity
easily over stimulated being my main symptoms
In context ↗ - Pain & fibromyalgia
Fatigue , brainfog , PEM , stiff muscles, adrenaline surges , muscle weakness
In context ↗
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