Bedridden with ME/CFS and unable to eat, still fainting with no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
This is before I ever knew that I had CFS after struggling with it for 10 years.
In context ↗ - At worst: Severe
In July it was so bad to the point that I was bedridden. ... I couldn’t get up or go outside. I couldn’t even eat or shower.
In context ↗ - Now: No benefit
I’ve had more syncope + convulsion episodes since then. ... I’m still learning on navigating and restructuring my life with this disease.
In context ↗ - Began after: nothing they could name
after struggling with it for 10 years
In context ↗
Summary
After about ten years struggling with CFS, months of overtime in early 2021 coincided with endless migraines and a first fainting episode with convulsions. They lost their job in May 2021; by July they were bedridden, unable to eat or shower, and an August suicide attempt led to psychiatric hospitalisation and medication that started them on the right path. A therapist raised CFS in 2022, and they still have fainting episodes while restructuring life around the illness.
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What they tried
Also tried
Their words about each treatment
- the right meds · Helped
ending up in psych was the best thing that could happen to me because it got me started on the right meds (minus the bipolar disorder. That was a misdiagnosis)
In context ↗ - therapist · Not said
I met a therapist in 2022 that brought up CFS, which got me started on the journey I’m on now.
In context ↗ - sativa drops · Helped
I’ve been taking sativa drops that have helped with the chronic pain a lot
In context ↗ - B12 shot · Not said
my doctor suggested LDN if the B12 shot she just gave me doesn’t work
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. 2 steps say too little to place on the scale and are only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| ~2014 | CFS began, still working with recurring migrainesafter struggling with it for 10 yearsIn context ↗ | Mild |
| February 2021 | overtime at work brought endless migraines and a first syncope with convulsionsI was working a lot of overtime at my job and the migraines startedIn context ↗ | Mild |
| May 2021 | fatigue worsened and they lost their jobthe fatigue kept getting worse, and I lost my job in May because of itIn context ↗ | Moderate |
| July 2021 | bedridden, could not get up, eat or showerIn July it was so bad to the point that I was bedridden.In context ↗ | Severe |
| August 2021 | psychiatric hospitalisation after suicide attempt; started on medicationit got me started on the right medsIn context ↗ | Not stated |
| June 2024 | still having syncope episodes while restructuring life around CFSI’m still learning on navigating and restructuring my life with this disease.In context ↗ | Not stated |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
6-months of PEM was incredibly tough though
In context ↗ - Headaches & migraine
endless migraines that lasted from February 2021- August 2021
In context ↗ - POTS & dysautonomia
I’ve had more syncope + convulsion episodes since then
In context ↗ - Pain & fibromyalgia
I’ve been taking sativa drops that have helped with the chronic pain a lot
In context ↗ - Anxiety & low mood
It can be so hard and depressing
In context ↗