Long COVID with fatigue, brain fog and PEM, nearly all day in bed, not working; LDN no help
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 4 years
- Last post
- Sep 2024
In their words
- Condition: Long COVID
I have had what I suspect to be Long-COVID or ME/CFS due to COVID for somewhere between 2 and 4 years
In context ↗ - At worst: Severe
I spend nearly all day in bed or drawing next to my bed. I can only walk for 20 minutes a day and that’s pushing it
In context ↗ - Now: No benefit
after a week of it I haven’t noticed much
In context ↗ - Began after: COVID
I had what I suspected was COVID in early February of 2020
Summary
Collin, 30, dates a suspected long COVID or ME/CFS illness to a COVID-like infection in February 2020, and says he went downhill faster after testing positive again in October 2022. He reports fatigue, brain fog, PEM, joint pain, breathlessness and POTS-like lightheadedness, spends nearly all day in bed, has not worked since May 2023 and can walk only about 20 minutes a day. A week on 3 mg LDN had not helped.
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What they tried
Also tried
Their words about each treatment
- LDN · No change
One of them finally got me 3mgs of LDN (a.k.a. “Low Do’ ‘trone”) from a compounding pharmacy but after a week of it I haven’t noticed much.
In context ↗ - exercising · Worse
Made the mistake of exercising a while back… never again. The exercise intolerance is intense. Like needles in my lungs!
In context ↗
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 2.8 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| early February 2020 | Suspected COVID lung infectionI had what I suspected was COVID in early February of 2020 (though it’s impossible to know for sure with that timing)—a brutal lung infection, 6 day fever, and cough that lasted weeks.In context ↗ | Not stated | |
| October 2022 | COVID reinfection, went downhill fasterThen I tested positive again in October of 2022–right before I went downhill a lot faster.In context ↗ | Not stated | |
| 2022 to early 2023 | Mostly in bed, walking limited to 20 minutesSince 2022-early 2023 I don’t even recognize myself. I spend nearly all day in bed or drawing next to my bed. I can only walk for 20 minutes a dayIn context ↗ | Severe | |
| 2024-09-13 | Still mostly in bed and unable to work; a week on LDN with no noticeable effectI haven’t been able to work since last May, 2023 ... after a week of it I haven’t noticed muchIn context ↗ | Severe | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Made the mistake of exercising a while back… never again. The exercise intolerance is intense.
In context ↗ - Brain fog
I mostly suffer from fatigue, brain-fog
In context ↗ - Pain & fibromyalgia
joint pain, muscle spasms
In context ↗ - Breathlessness
shortness of breath
In context ↗ - POTS & dysautonomia
POTS-like symptoms (lightheadedness on standing)
In context ↗ - Anxiety & low mood
depression, anxiety
In context ↗ - Gut problems
gastrointestinal distress
In context ↗