Partially bedbound with long COVID, somewhat better with rest and pacing
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Sep 2025
In their words
- Condition: Long COVID
my Naturopath recommended the high range for long covid / ME.
In context ↗ - At worst: Moderate
As someone attempting to move my baseline from moderate to mild
In context ↗ - Now: Somewhat better
I feel it has improved my fatigue and crash cycles somewhat - all symptoms are still present but crashes have been less severe and shorter than before meds.
In context ↗
Read from 23 of their posts and comments; links to the 17 this page draws on
Summary
Sparrow 54925 started out mild with ME/CFS but kept working and socialising until their baseline dropped to moderate; they became partially bedbound and later used an ambulatory wheelchair and power chair. Rest and pacing helped most; low-dose naltrexone made crashes shorter and less severe, and guanfacine and acetyl-L-carnitine also helped. They were attempting to move their baseline from moderate to mild and had gone on leave from work.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
I started at 1.5mg and increased every two weeks until 4.5mg and I've been at this dose for 8 months. I feel it has improved my fatigue and crash cycles somewhat
In context ↗ - 5-HTP · Helped
5-HTP 200mg nightly changed my sleep quality dramatically
In context ↗ - Naturopath · Helped
My Naturopath has been the most helpful w/ regular consultation and adjustments to both supplements and prescription medications and improving quality of life
In context ↗ - acupuncture · Helped
I see my Naturopath 2x a month for accupuncture and it is incredibly valuable
In context ↗ - pacing · Helped
Acceptance and pacing have been instrumental to managing my QoL
In context ↗ - rest · Helped a lot
Rest has been the most impactful intervention for me
In context ↗ - mantra with breath work · Helped
I have a mantra I practice which helps me
In context ↗ - Propranolol · Helped
I take as needed for high HR and reducing physical symptoms of stress
In context ↗ - Guanfacine · Helped
Guanfacine + NAC - improved verbal recall and getting through a sentence without feeling gassed out have been noticeable since starting Guanfacine
In context ↗ - NAC · Helped
Guanfacine + NAC - improved verbal recall and getting through a sentence without feeling gassed out
In context ↗ - Hemp derived (THC-free) CBD and CBG · Helped
Hemp derived (THC-free) CBD and CBG are helpful for me
In context ↗ - daily walking and stretching · Helped
daily movement has been a meaningful step in improving both my pain and sometimes helps my energy
In context ↗ - blue light blocking · Helped
blue light blocking and switching to smaller screens with less eye movement needed has also helped reduce strain
In context ↗ - Acetyl L-Carnitine · Helped
I'm taking 3-4.5 grams per day over the last 6 weeks and I've noticed my symptoms have improved.
In context ↗ - compression up to waist, extra electrolytes and fluids · Helped
compression up to waist - helps keep a little more blood returning to the brain while upright for longer periods
In context ↗
Approaches: Alternative therapies · Amino acids and carnitine · Pacing · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | fell ill and started out mildI started out mild, and decided I'd rather work, socialize, and just deal with the consequencesIn context ↗ | Mild | |
| — | kept pushing through work and social life and declined to moderate, partially bedboundI know my baseline declined and isn't coming back while I've tried to keep going through life like it was just superficial symptoms.In context ↗ | Moderate | |
| 2025-01-21 | LDN plus radical activity reduction made crashes shorter and less severeI feel it has improved my fatigue and crash cycles somewhat - all symptoms are still present but crashes have been less severe and shorter than before meds.In context ↗ | Moderate | Low-dose naltrexone |
| 2025-09-03 | using a power chair and ambulatory wheelchair, working on moving baseline from moderate to mildI bought a power chair earlier this year and am adjusting to being an ambulatory wheelchair user.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Low-dose naltrexone“Side effects have been some dizzy/grogginess - so I take it at night before bed. Vivid dreams are the other side effect for me but that hasn't been disruptive enough for me to want to stop.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've been in a rolling cycle of crashes and rebounds for 2 years
In context ↗ - Sleep problems
5-HTP 200mg nightly changed my sleep quality dramatically.
In context ↗ - Brain fog
improved verbal recall and getting through a sentence without feeling gassed out have been noticeable since starting Guanfacine
In context ↗ - Vision problems
these symptoms still return when I overuse my eyes w/ screens, driving etc.
In context ↗ - Heart symptoms & palpitations
I take as needed for high HR and reducing physical symptoms of stress
In context ↗ - POTS & dysautonomia
compression up to waist - helps keep a little more blood returning to the brain while upright for longer periods
In context ↗ - Pain & fibromyalgia
I stretch a few times a week to manage pain from being partially bedbound
In context ↗
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