Largely bedbound for two years with ME/CFS, now much better after cutting stress
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
I struggle with suicidal ideas when I'm in the deepest darkest parts of my cfs.
In context ↗ - At worst: Severe
I spent 2 yrs practically bed bound
In context ↗ - Now: Much better
It's been 7 years and I'm back to a functional level though nowhere near what I was before.
In context ↗ - Began after: stress or burnout
There does seem to be a connection with the pre-eclampsia and initial onset of symptoms. ... Add 4 years of overworking and high stress to the picture and this is when my symptoms became debilitating.
Read from 19 of their posts and comments; links to the 13 this page draws on
Summary
A nurse who fell ill around 2017 after pre-eclampsia and years of 80-hour weeks, she was largely bedbound for two years after losing her job in 2020 and still unable to work in mid-2022. Cutting stress and taking an 18-hour-a-week nursing job brought her back to a functional level, though she is nowhere near her old self and stress can set her back a week. Prednisone for poison ivy briefly relieved her symptoms.
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What they tried
Also tried
Their words about each treatment
- prednisone · Helped a lot
Put on prednisone for a week or two and wow.... within 1-2 days I was feeling better than I have since getting cfs.
In context ↗ - IV steroid · Helped a lot
Received a dose of IV steroid and felt relief from most of my cfs symptoms, not just the migraine.
In context ↗ - saying no to people · No change
I've been very conscious of the way I treat my body and I've started saying "no" to people. But nothing has changed.
In context ↗ - medicine to stay awake · Not said
I cannot stay awake without using medicine.
In context ↗ - melatonin · Helped
Melatonin works great for me but only for a few days.
In context ↗ - a few different meds · Helped
So I try to rotate between a few different meds. Doesn't always work but, I'm super grateful for the nights it does
In context ↗ - nexplanon implant · Helped
I have the nexplanon implant currently and it has helped slightly
In context ↗ - antidepressants · Not said
sometimes more meds are needed to get through really hard times.. But then I titrate off of them and back to my 'normal meds when I'm ready
In context ↗ - blood pressure medication · Helped
Taking extra dosages (under my doctor's supervision) really helps with the brain fog, upper body pain and migraines.
In context ↗ - time in nature and camping · Helped
I find being out in nature to be incredibly healing as well
In context ↗ - stress reduction · Helped
Stress reduction. The most beneficial was removing myself from negative energy.
In context ↗
Approaches: Mind-body practices · Other drugs and medicines
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2017 | symptoms began after pre-eclampsia and 80-hour work weeksI then returned to work two weeks early due to staffing shortages and just destroyed what little healthi had left by working myself to death.In context ↗ | Mild |
| 2020-2022 | lost nursing job during COVID, about two years practically bed boundI didn't even know how sick I actually was....I spent 2 yrs practically bed bound.In context ↗ | Severe |
| 2023-08 | started low-stress private home nursing job, 18 hours a weekBut I now work as a private home nurse for an amazing gentleman..18 hrs a week. Less stress, more gratification.In context ↗ | Mild |
| 2024-03 | back to a functional level but still far below her old selfIt's been 7 years and I'm back to a functional level though nowhere near what I was before.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Even stress can take me out for a week if I don't pay attention.
In context ↗ - Brain fog
I cannot remember anything and my life is just wasting away in my bed.
In context ↗ - Headaches & migraine
Migraines, upper back muscle spasms
In context ↗ - Anxiety & low mood
I struggle with suicidal ideas when I'm in the deepest darkest parts of my cfs.
In context ↗ - Muscle weakness
I can only rub my husband's back for a few minutes before I have to stop.
In context ↗
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