Bedbound with severe ME/CFS, some improvement to moderate after aggressive resting
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I've been lucky that they have accepted the CFS diagnosis.
In context ↗ - At worst: Severe
I pushed myself way too long and crashed to bed bound and severe at the beginning of this sick leave.
In context ↗ - Now: Somewhat better
After 4 months or so I slowly started to recover, and now after a year of aggressive resting I'm moderate.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
A Finnish office worker with CFS and depression was once mild, then pushed too long and crashed to bed-bound severe at the start of five months of sick leave. Slow recovery with aggressive resting left them moderate after about a year. They take an antidepressant, bisoprolol for a racing heart and triptyl for pain and night sweats, and use cannabis for pain; sweating and a fast heart rate on exertion remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- cannabis · Helped
I find it helps me manage the pain and restlessness, it calms me down to really rest.
In context ↗ - sertralin or venlafaxin · Helped
They have helped some, so I wouldn't like to stop or change them
In context ↗ - Bisoprolol · Helped
It has so far only made my resting HR lower. Which has helped some.
In context ↗ - triptyl · Helped
Triptyl was originally prescripted for pain, but has helped with my night sweats too maybe 50% of nights.
In context ↗ - aggressive resting · Helped
After 4 months or so I slowly started to recover, and now after a year of aggressive resting I'm moderate.
In context ↗ - gel seat cushion · Helped
I have lower back pain and use a gel seat cushion, and think it helps a bit.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | mild ME/CFSI also was once mild.In context ↗ | Mild | |
| beginning of sick leave | crashed to bed bound after pushing too longI pushed myself way too long and crashed to bed bound and severe at the beginning of this sick leave.In context ↗ | Severe | |
| about 4 months after the crash | slowly started to recoverAfter 4 months or so I slowly started to recoverIn context ↗ | Severe | Radical rest |
| 2023-09 | moderate after a year of aggressive restingand now after a year of aggressive resting I'm moderateIn context ↗ | Moderate | Radical rest |
| 2024-06-09 | lower back pain, using a gel seat cushionI have lower back pain and use a gel seat cushion, and think it helps a bit.In context ↗ | Moderate |
Adverse events
- Cannabis (THC, marijuana)“Smoking increases my heart rate for first couple of minutes, but I think that is the only downside.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Usual PEM takes 2 days to 2 weeks.
In context ↗ - POTS & dysautonomia
I've been thinking I might have POTS.
In context ↗ - Heart symptoms & palpitations
Every time I start to do _anything_ my heart rate will shoot up and right after comes the sweat.
In context ↗ - Temperature regulation
What sometimes makes my night sweats a little easier:
In context ↗ - Pain & fibromyalgia
Triptyl was originally prescripted for pain
In context ↗ - Sleep problems
I find it helps me manage the pain and restlessness
In context ↗ - Anxiety & low mood
Maybe the depression diagnosis also helps some
In context ↗
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