Bedbound with long COVID, now much better after real rest and sleep apnoea treatment
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- May 2023
In their words
- Condition: Long COVID
Until I knew more about Covid long haul, I have been working under the assumption that I have developed fibromyalgia, but because it was triggered by Covid
In context ↗ - At worst: Severe
I was bedbound at one point
In context ↗ - Now: Much better
treating the sleep apnea has made a marked improvement on my symptoms, but many still exist ... I'm finally starting to consider going back part time
- Began after: COVID
because it was triggered by Covid, maybe that is a better dx
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
After COVID-19, they assumed they had fibromyalgia, with pain and fatigue that cycled between better and worse with stress, plus migraines, and they were bedbound at one point. They quit their job and went on disability, crediting real rest for a gradual improvement, and by May 2023 were considering returning part time. Treating sleep apnoea helped markedly, but sleep and other symptoms remained.
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What they tried
Their words about each treatment
- real rest (stopping work) · Helped a lot
I would not have started to feel better without real rest. ... I 100% think I would never get better without stopping work for a while
In context ↗ - treating the sleep apnea · Helped
treating the sleep apnea has made a marked improvement on my symptoms, but many still exist
In context ↗ - therapist · Helped
Seeing a therapist has helped me figure out how to deal with and manage my symptoms.
In context ↗ - IV fluids · Helped
I’ve ended up in the ER because of migraines that won’t go away, I get IV fluids and some other meds, and it really helps
In context ↗ - stimulants · Not said
trouble waking up without stimulants
In context ↗
Approaches: Radical rest
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| January 2020 | COVID-19 illness, symptoms assumed to be fibromyalgiaSince the beginning (in January) I have had times when my symptoms seem to be improvingIn context ↗ | Not stated |
| 2021-10 | symptoms flared again, seeming to follow stressthen they get worse again, it seems like it happens when I am stressedIn context ↗ | Not stated |
| — | bedbound at their lowest pointI was bedbound at one pointIn context ↗ | Severe |
| 2021 | stopped working, went on disability and rested; gradual improvementI would not have started to feel better without real restIn context ↗ | Moderate |
| 2023-05-21 | sleep apnoea treated with marked improvement; considering part-time worktreating the sleep apnea has made a marked improvement on my symptoms, but many still existIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
the increased pain and fatigue make my stress levels worse
In context ↗ - Headaches & migraine
I’ve ended up in the ER because of migraines that won’t go away
In context ↗ - Sleep problems
including trouble falling asleep, frequent waking, and trouble waking up without stimulants
In context ↗
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