Bedridden with ME/CFS after a COVID vaccine, now a little better with pacing and sleep
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
Ive got the ME/CFS diagnos, but didnt give anything else than a excuse doctors to not investigate further.
In context ↗ - At worst: Severe
It made me bed ridden. POTS. Pain. Insomnia. Severe brain fog.
In context ↗ - Now: Somewhat better
Ive gotten a liiitle bit better.
In context ↗ - Began after: a vaccination
The vaccine properly fckd me up.
Summary
Gull 83180 became bedridden after a COVID vaccine in November 2021, with POTS, pain, insomnia, severe brain fog and constant fight-or-flight, and was hospitalised for two months. They were diagnosed with ME/CFS. By February 2023 they had improved a little and said pacing, sleep, food and relaxing the nervous system were important, but in July 2024 they still reported a lot of trouble breathing, pain, weakness and cognitive decline and were not sure they would make it.
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What they tried
Also tried
Their words about each treatment
- SSRI · Not said
When I got sick I was going through SSRI withdrawls.
In context ↗ - vaccine · Much worse
The vaccine properly fckd me up. ... It made me bed ridden.
- excersise · Worse
I was also very active, maybe to active. ... I think this made my situayion worse too.
In context ↗ - pacing · Not said
pacing and trying to relax the nervous system is important
In context ↗ - garmin watch · Not said
Also got a garmin watch to help me with pacing
In context ↗ - trying to relax the nervous system · Not said
trying to relax the nervous system is important
In context ↗ - a lot of medications · Not said
Im also on a lot of medications right now after seeing a specialist.
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. The first step with a time is 15 months after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| November 2021 | COVID vaccine, followed by illnessI got the shot in november -21.In context ↗ | Not stated | |
| early 2022 | Bedridden and hospitalised for two monthsIt made me bed ridden. POTS. Pain. Insomnia. Severe brain fog. Constant fight or flight. I were in hospital for 2 months.In context ↗ | Severe | |
| 2023-02-04 | A little better with pacing and sleep/nervous-system measuresIve gotten a liiitle bit better. Also got a garmin watch to help me with pacing.In context ↗ | Severe | Pacing and the energy envelope |
| 2024-07-20 | Still highly symptomatic with breathlessness, pain, weakness and cognitive declineI have a lot of trouble breathing, a lot of pain, weakness, cognitive declineIn context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“It made me bed ridden. POTS. Pain. Insomnia. Severe brain fog. Constant fight or flight.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I were in hospital for 2 months.” In context ↗ Hospitalisation
- Everyday exercise and activity“I think this made my situayion worse too.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
For me it started with POTS and general weakness
In context ↗ - Brain fog
cognitive decline
In context ↗ - Anxiety & low mood
in constant fight or flight
In context ↗ - Breathlessness
a lot of trouble breathing
In context ↗ - Mast cell (MCAS) & allergies
MCAS-type stuff
In context ↗