Mostly housebound with long COVID, now almost back to normal after time and rest
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Mar 2024
In their words
- Condition: Long COVID
I am a long hauler
In context ↗ - At worst: Moderate
was mostly disabled/house bound for that time
In context ↗ - Now: Near normal
Today I'm around 95% my former self, lasting symptoms are very mild other than anxiety/adrenaline issues that I think are more related to PTSD.
In context ↗ - Began after: COVID
I had PVFS after getting OG covid in 2020-2021
- Says they never had: Post-exertional malaise
I know I don't have it as I don't have PEM, fortunately
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
This user got COVID-19 in March 2020 with pneumonia and severe insomnia, then was mostly housebound and disabled for six months; the first year was hell. They credit time, rest, sleep, stress management, pacing, a low-histamine diet and antihistamines. Around two years they felt mostly themselves, but symptoms flared in spring 2023; by March 2024 they were about 95% of their former self with occasional breathlessness and heart palpitations.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest (6+ months) · Helped a lot
What has ultimately worked for me has been 6+ months of rest
In context ↗ - Wim Hof breathing / vagus nerve stimulation · Helped
I use to do this when I was in my darkest days of covid/long covid and it absolutely helpoed.
In context ↗ - pacing · Helped
Basically listened to my body and "paced" doing as much as I could do in a day without setting me back the next.
In context ↗ - low histamine diet · Helped
Only things that worked for me were low histamine diet, antihistamines (sparingly), sleep, rest and pacing.
In context ↗ - good sleep · Helped
doing everything I can to ensure I get sleep at night
In context ↗ - managing stress · Helped
the only thing I have found to work for me is time, good sleep & managing stress
In context ↗ - B vitamins (especially B1 & B3) · Helped
Supplementation with B vitamins (especially B1 & B3) also seems to help.
In context ↗ - fast · Helped
I'm thinking of doing another fast, usually they help.
In context ↗
Approaches: H1 antihistamines · Diet · Mind-body practices · Pacing · Radical rest · Vagus nerve stimulation
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 |
|---|---|---|---|
| March 2020 | COVID-19 with pneumonia and severe insomnia; long COVID beginsMarch 2020. Had moderate/severe C-19 with covid pneumonia, severe insomniaIn context ↗ | Moderate | |
| 2020 | mostly disabled and housebound; first year was helllasted around 6 months and was mostly disabled/house bound for that timeIn context ↗ | Moderate | |
| around 2 years after onset | felt pretty much themselves; sleep greatly improvedAround the 2 year mark I felt pretty much myself with greatly improved sleepIn context ↗ | Near normal | Time and spontaneous remission |
| spring 2023 | symptoms flared again with no apparent reasonfor no apparent reason my symptoms are going full force this coming springIn context ↗ | Moderate | |
| March 2024 | about 95% of former self, with occasional flare-upsToday I'm around 95% my former selfIn context ↗ | Near normal |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
severe insomnia
In context ↗ - Light & noise sensitivity
light/sound/smell sensitivity
In context ↗ - Heart symptoms & palpitations
occasional flare ups of breathlessness/heart palps
In context ↗ - Breathlessness
heart palpitations/breathlessness
In context ↗ - Anxiety & low mood
anxiety/adrenaline issues that I think are more related to PTSD
In context ↗ - Pain & fibromyalgia
random body pains
In context ↗ - Gut problems
still have GERD and sometimes swallow frequently but otherwise everything has gotten a lot better
In context ↗ - POTS & dysautonomia
balance problems
In context ↗
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