ME/CFS
Severe → relapsed
Severe ME/CFS, mostly bedbound, improved then relapsed after a crash
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2023
In their words
- Condition: ME/CFS
I previously had mild ME (able to work 2 days a week and have a good quality of life).
In context ↗ - At worst: Severe
today I’m back to just laying in the dark and struggling to get to the toilet. Just so incredibly weak and fatigued.
In context ↗ - Now: Relapsed
I made some improvements but have got worse again. Tried to go outside yesterday in a wheelchair and have crashed today.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
They had mild ME/CFS, able to work two days a week, before a bad COVID infection in November 2022 left them severe, with full-body shut-downs, insomnia, severe weakness and mostly bed bound. Propranolol eased the tachycardia, amitriptyline helped sleep and they tried iron, B12 and multivitamins. By early January 2023 they were improving and mostly housebound, but a wheelchair outing triggered a crash, leaving them too weak to move and feeling viral again.
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What they tried
Also tried
Their words about each treatment
- low dose propranolol · Helped
I’m on low dose propranolol as I had really bad tachycardia ... My heart and chest are much better now worth the beta blockers also
- amitryptalline · Not said
amitryptalline for sleep
In context ↗ - loratadine (self prescribed) · Not said
loratadine (self prescribed)
In context ↗ - a range of supplements · Not said
and a range of supplements
In context ↗ - rest and pace · Not said
I really am trying to rest and pace and not push myself as I’m terrified of staying in the severe category
In context ↗ - high dose iron · Not said
I’m taking high dose iron with a strong multivitamin with B12
In context ↗ - B12 · Not said
Have been borderline low b12 before and sorted with oral supplementation
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | pre-existing mild ME, working two days a weekI previously had mild ME (able to work 2 days a week and have a good quality of life).In context ↗ | Mild | |
| November 2022 | bad COVID infection; full-body shut-downs, worst fatigue everI had it really bad and went from mild to severe.In context ↗ | Severe | |
| 2023-01-07 | gradual improvement while resting and pacing, mostly houseboundI’m definitely making improvements, still mostly housebound but I can absolutely say I’m better than where I was 2 weeks ago.In context ↗ | Moderate | Pacing and the energy envelope |
| 2023-01-16 | crashed after going outside in a wheelchair; too weak to moveTried to go outside yesterday in a wheelchair and have crashed today. Too weak to do anything except lay completely still, feeling very viral again.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
it seems it’s taking so little to overdo it
In context ↗ - Sleep problems
Also many weeks of insomnia.
In context ↗ - Heart symptoms & palpitations
I had really bad tachycardia
In context ↗ - Muscle weakness
I’m left with severe fatigue and weakness
In context ↗ - Flu-like symptoms
feeling very viral again
In context ↗