Long COVID improved then relapsed; mostly housebound, unable to work, pacing helps
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6.5 years
- Last post
- Jun 2026
In their words
- Condition: Long COVID
My first infection was in Marc 2020 and I got long covid since then.
In context ↗ - At worst: Moderate
Not bed-bound, but mostly house-bound.
In context ↗ - Now: Relapsed
After two years it started to get better. But got covid again and never got better.
In context ↗ - Began after: COVID
My first infection was in Marc 2020 and I got long covid since then.
In context ↗
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
Crest 49449 has had long COVID since a COVID infection in March 2020. She improved after about two years, but a further COVID infection left her worse, and she describes PEM, muscle and joint pain, fevers, breathlessness in heat and a lost sense of smell. By 2026 she was mostly house-bound, at about half her previous activity and unable to work, with pacing letting her function a few hours a day.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- physiotherapist · Helped
I’m going to the physiotherapist now to build up my muscles. He understands PEM and helps me feel when I reach my limits. And this helps a lot.
In context ↗ - pacing · Helped
With pacing I can function a few hours a day, but the chronic pain didn’t go away.
In context ↗ - bike · Worse
My bike gave me some severe PEM.
In context ↗
Approaches: Pacing · Physiotherapy and rehab
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| March 2020 | COVID infection, long COVID beganMy first infection was in Marc 2020 and I got long covid since then.In context ↗ |
| after two years | started to get betterAfter two years it started to get better.In context ↗ |
| — | COVID reinfection, never got betterBut got covid again and never got better.In context ↗ |
| 2025-06-06 | bedbound with fever for 3 days, muscle and joint pain for weeksLast time I was bedbound with fever for 3 days. Muscle and joint pain for weeks.In context ↗ |
| 2025-09-25 | back to half of normal days, not workingI'm at 50% of my normal days before covid (March 2020). Not able to work at the momentIn context ↗ |
| 2026-06-01 | severe PEM after cyclingMy bike gave me some severe PEM.In context ↗ |
| 2026-06-19 | mostly house-bound, fatigue and PEM worstNot bed-bound, but mostly house-bound. The fatigue and PEM are my worst symptoms.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
LC for over 5 years and PEM just gets worse
In context ↗ - Pain & fibromyalgia
With pacing I can function a few hours a day, but the chronic pain didn’t go away.
In context ↗ - Temperature regulation
Last time I was bedbound with fever for 3 days.
In context ↗ - Breathlessness
it had a hugh effect on me. ... At least I can breathe
In context ↗ - Loss of smell or taste
both don’t explain the PEM and the loss of smell or distorted taste
In context ↗
Ask Miruvor AI
Similar stories
-
Extremely severe, unable to move or talk, improved then relapsed, still severe, bedridden
Bedridden from about age 19, they were extremely severe in 2015-16, unable to move, walk or talk, and improved to moderate-severe in 2019-21 without knowing what helped. Adderall's false energy and months of doctor appointments crashed them to very severe in…
-
Bedbound at worst with ME/CFS after COVID, now somewhat better with pacing
A person in New Zealand became ill with COVID around mid-2022. They worsened for 14 months to severe and bedbound, and are not working. Pacing, an electric wheelchair, mast-cell and arthritis drugs, and vitamin D later brought them to mild (moderate side of…
-
Housebound with ME/CFS, improved on LDN and memantine then relapsed
After COVID in August 2024 they were housebound for months with severe GI flares, then fatigue, body and joint pain and brain fog. They credited low-dose naltrexone and memantine for lifting them from housebound to roughly 75–80% recovered, with semaglutide…
-
Housebound and mostly bedbound with ME/CFS, now much better with pacing and support
They fell ill in 2018 at 18 and spent three years housebound and mostly bedbound, unable to bathe or feed themselves, worsening further after graded exercise therapy. After diagnosis, they followed a strict pacing plan with a therapist and family support,…