Long COVID
Very severe → no benefitIll for 3.5 years
Bedbound with long COVID and on permanent oxygen; beta blockers didn't help
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 3.5 years
- Last post
- May 2026
In their words
- Condition: Long COVID
I got long covid after a covid infection in December 2022.
In context ↗ - At worst: Very severe
I'm bedbound 24/7 these days. At 2 and a half years into this.
In context ↗ - Now: No benefit
Apart from that working to keep my heart rate under 100 all other symptoms have continued to get worse.
In context ↗ - Began after: COVID
I got long covid after a covid infection in December 2022.
In context ↗ - Says they never had: Brain fog
I never had the cognitive symptoms some mention in the group.
Read from 47 of their posts and comments; links to the 20 this page draws on
Summary
Lagoon 58467, in the UK, developed long COVID after a COVID-19 infection in December 2022, with oxygen levels dropping into the 70s on any movement. They improved slightly on supplemental oxygen over ten months, then became bedbound 24/7 after standing for a minute at the start of 2024. A September 2025 reinfection left them on permanent oxygen and unable to move themselves; beta blockers only controlled the heart rate.
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What they tried
Also tried
Their words about each treatment
- BiPaP machine · Not said
So I use a BiPaP machine to help me breath properly.
In context ↗ - fludrocortisone · Helped
My fludrocortisone, that I took for a version of pots pre covid seems to be about half effective now.
In context ↗ - supplemental oxygen · Helped
I'm on supplemental oxygen though strangely it doesn't stop the drop. It bounces me back in to the 90s faster.
In context ↗ - vit K · Worse
it was always recommended to have vit K but it used to give me heart palpitations
In context ↗ - choline · Helped
I used to take choline in powder form pre covid and found it gave me more energy.
In context ↗ - melatonin · Helped
I had melatonin years ago, and from memory, yes it knocked me out very soon after.
In context ↗ - blood thinning injection · Not said
most of the symptoms I have now wasn't there when I was in hospital. They appeared 2 days after I left.
In context ↗ - paxlovid · Helped
It appeared to cure my acute covid. But didn't stop me getting long covid.
In context ↗ - doxycycline · No change
It didn't work for me, and didn't stop me getting long covid.
In context ↗ - leg lift exercises in bed · Worse
The firey pain in my muscles I'd never felt before.
In context ↗ - propranolol · Helped
I've started with half a tablet and it's kept my heart rate under control. ... Though I feel heavy on my chest.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| December 2022 | COVID-19 with low oxygen; 11 days in hospitalI got covid on December 8th and came out on December 19th.In context ↗ | Severe |
| March 2023 | oxygen readings rose from the 70s to the 80sAt the moment I'm in the 80s. I came from the 70s.In context ↗ | Severe |
| September 2023 | slight improvement at about ten months; still needs oxygen to moveI've just past the 10 months mark. Things have slightly improved, though I'm not able to move around without oxygen yet.In context ↗ | Severe |
| November 2023 | crashed after standing up for a minuteStanding up for a minute as put my small progress back.In context ↗ | Severe |
| September 2025 | COVID reinfection; now on permanent oxygenBut I got covid again last September 2025 and now I'm on 2 to 3 litres of oxygen permanent.In context ↗ | Very severe |
| May 2026 | worst state after reinfection; cannot move themselvesIt's given me the worst version I think, gut, brain, and fatigue (I can't move myself now).In context ↗ | Very severe |
Adverse events
- Vitamin K and K2“it was always recommended to have vit K but it used to give me heart palpitations” In context ↗ Heart rhythm problems
- Propranolol (Inderal)“Though I feel heavy on my chest. I've noticed it's a common side effect. I'm thinking of going to a quarter tablet” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsHeart symptoms & palpitationsMuscle weaknessPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- POTS & dysautonomia
I had pots before covid. But it was manageable with medication.
In context ↗ - Heart symptoms & palpitations
My heart rate goes up, I feel palpitations, and I start getting light headed.
In context ↗ - Muscle weakness
Since then my legs have become weak.
In context ↗ - Pain & fibromyalgia
The firey pain in my muscles I'd never felt before.
In context ↗ - Anxiety & low mood
So I think I'm slowly improving but because of the anxiety I've been more bedridden recently.
In context ↗ - Gut problems
It's given me the worst version I think, gut, brain, and fatigue (I can't move myself now).
In context ↗