Bed- or housebound with long COVID, somewhat better with radical rest and fostair
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Feb 2025
In their words
- Condition: Long COVID
I’ve had LC for two and a half years
In context ↗ - At worst: Severe
Being pretty much bed/housebound for two and half years
In context ↗ - Now: Somewhat better
it’s a little better then when I first had long covid but I’m still not able to do a lot
In context ↗ - Began after: COVID
Had massive breathing issues for 2 and a half years since having covid
In context ↗ - Says they never had: Gut problems
no digestive issues as far as I know
- Says they never had: Sleep problems
I didn’t have lots of sleep issues before I took it.
Read from 26 of their posts and comments; links to the 20 this page draws on
Summary
Bramble 22145 developed long COVID around late 2020, with severe breathing problems, asthma and inducible laryngeal obstruction. They stopped work for six months, later worked from home for ten months before stopping again, and were bed- or housebound for about two and a half years, with repeated crashes and asthma attacks. Radical rest and high-dose fostair helped somewhat; short prednisone courses helped a lot but only briefly; pycnogel helped a little and dairy exclusion did nothing. They remained very ill at their last health update in mid-2023.
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What they tried
What they credit
Also tried
Their words about each treatment
- spiriva · No change
I’ve been on spiriva didn’t really help me although only was on it for 6 weeks.
In context ↗ - fostair (steroid inhaler) · Helped
The main things that have helped me slightly are huge amounts of rest and high doses of steroid inhaler (fostair).
In context ↗ - rest completely / full rest programme · Helped
The only advice that has helped me is to rest completely - no work, no exercise (apart from two 10 minute walks a day), no housework etc. this has not cured the breathing issues but it has slightly improved them.
In context ↗ - dairy-free diet · No change
I’ve just given up dairy for five weeks and felt no effect from that
In context ↗ - pycnogel · Helped
I take a herbal supplement called pycnogel recommended by my pharmacist which has helped a bit but it’s expensive.
In context ↗ - scent-free home / avoiding fumes and fragrances · Helped a lot
I now use nothing scented in my home ... This might sound a little extreme but has massively helped me.
In context ↗ - prednisone / steroid tablets · Helped a lot
A few days on that and I feel like I can breathe for the first time. As soon as my 5 day course is over I come crashing down again.
In context ↗ - fexofenadine · Helped
I’ve been prescribed fexofenadine for my allergies and asthma. It does help with sleep but I didn’t have lots of sleep issues before I took it.
In context ↗ - covid jab and boosters · Helped
I had the jab and boosters while I had long covid. Had no effect on me, but when I got covid a second time I was ok and it didn’t worsen my LC symptoms. So for me it was a huge help
In context ↗ - pacing · Helped
Yes pacing yourself is obviously super useful and I do it myself
In context ↗ - long covid clinic pacing programme · No change
My long covid clinic was USELESS and did absolutely nothing. All they did was six sessions, in each one telling us to pace ourselves, that was it.
In context ↗ - breathing pattern disorder exercises · Not said
And I did some breathing pattern disorder exercises. Nothing has massively helped.
In context ↗
Approaches: Other drugs and medicines · 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. The chart starts 3 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| late 2020 | COVID-19 infection; chronic breathing problems beganHad massive breathing issues for 2 and a half years since having covidIn context ↗ | Not stated | |
| early 2021 | stopped work completely for six monthsI stopped work completely for 6 months.In context ↗ | Severe | |
| mid 2022 | worsened while working from home; in bed nearly a monthended up getting worse and worse and unable to get out of bed for nearly a monthIn context ↗ | Severe | |
| mid 2022 | left job for a full rest programmeSaw a specialist who put me on a full rest programme so left my job and have been off for almost a year now.In context ↗ | Severe | Radical rest |
| about 8 weeks before Christmas 2022 | improved a lot for about 8 weeksFor about 8 weeks before Christmas I improved a lot and was more able to do things/had slightly better breathing.In context ↗ | Moderate | Radical rest |
| early 2023 | went back to being bad againBut then it went back to being bad againIn context ↗ | Severe | |
| May 2023 | good for 4-5 weeksI’ve actually been good the last 4-5 weeks so was feeling greatIn context ↗ | Moderate | |
| June 2023 | big crash with two-hour asthma attackhad a big crash yesterday which ended up in a two hour asthma attack in the eveningIn context ↗ | Severe | |
| July 2023 | still ill; rest and steroid inhaler help slightlyThe main things that have helped me slightly are huge amounts of rest and high doses of steroid inhaler (fostair).In context ↗ | Moderate |
Adverse events
- Elimination diets (other)“I’ve cut out dairy ... no change so far apart from wild mood swings and craving dairy” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Breathlessness
Had massive breathing issues for 2 and a half years since having covid
In context ↗ - Post-exertional malaise
I have crashes even after pacing myself.
In context ↗ - Heart symptoms & palpitations
my heart rate is very raised
In context ↗ - Mast cell (MCAS) & allergies
strong smells ... set off my asthma
In context ↗
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