Bedbound or housebound with ME/CFS, improved with gradual activity then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Jun 2023
In their words
- Condition: ME/CFS
Had cfs symptoms (no diagnose so I'm wary of naming it) for around 9 years now
In context ↗ - At worst: Severe
8 ish years ago it was so bad I barely left my bed
In context ↗ - Now: Relapsed
I'm not very severe at the moment but have been bed bound in the past. Now can handle a few hours of activity a week.
In context ↗ - Began after: another virus
My fatigue was set off by the swine flu but when I'm feeling better mentally I'm less tired too
Read from 48 of their posts and comments; links to the 19 this page draws on
Summary
Crane 55273 fell ill at 14 after swine flu and was bedbound or housebound for years. A 2018 breakup set her back months; she rebuilt function by very gradually increasing activity, mainly horse riding, and by following her body's late sleep rhythm. By late 2020 she was active several hours daily and averaging 10,000 steps, but a wall in early 2022 left her mostly bedbound again. By mid-2023 she managed a few hours of activity a week.
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What they tried
What they credit
Also tried
Their words about each treatment
- Zoloft · Worse
I was on Zoloft for many years that definitely didn't do much after a while beyond giving me bad side effects.
In context ↗ - therapists · No change
Therapists haven't been able to do jack squat, I've been to like 10 over the course of the years and haven't been able to talk to any of them.
In context ↗ - melatonin · Helped
I've tried melatonin before but it did nothing but give me awful hangovers ... Just 0,25 was enough for me
- brintellix · Not said
Switched to brintellix in the middle of January and I feel better now, but I don't know if that's the meds or just that I'm finally beginning to get over a painful breakup
In context ↗ - writing by hand · Helped
I also wrote a lot the first couple of weeks, by hand. That helped a lot.
In context ↗ - fruity popsicles · Helped
Fruity popsicles help my nausea for some reason, especially travel sickness.
In context ↗ - lying down most of the day · Helped
the more energy I save on lying down most of the day, the more energy I get to use on things that aren't as trivial
In context ↗ - bananas · Helped
Bananas sometimes help when my muscles are twitching
In context ↗ - riding my horse / raising activity levels slowly · Helped a lot
My illness appears to be very respondant to raising my activity levels incredibly slowly. ... I'd say this is almost exclusively due to riding.
In context ↗ - following my body's sleep rhythm · Helped a lot
Lately I've been saying fuck it and just followed the rhythm my body has been desperately telling me to stick to for YEARS and I'm feeling soooo much better.
In context ↗ - garmin vivosmart 5 · Not said
Many of us use smart watches to pinpoint what works and doesn't work. ... The one I have is like $100 (garmin vivosmart 5).
In context ↗
Approaches: Exercise and activity · Pacing
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 | After |
|---|---|---|---|
| 2009 (age 14, 8th grade) | became ill after swine flu, dropped out of school at 15I originally got sick after having the swine flu, got a lot better over a few yearsIn context ↗ | Moderate | |
| around 2010 | barely left bed for years8 ish years ago it was so bad I barely left my bedIn context ↗ | Severe | |
| 2014-2015 | relatively functional, workingI became relatively functional, at least physically, in the last three-four years. Worked like 80%In context ↗ | Mild | |
| January 2018 | crashed after breakup and pet lossesFollowing that I spent several months in my bedIn context ↗ | Severe | |
| August 2018 | riding horse a couple of times a weekCurrently out a couple of times a week riding my horseIn context ↗ | Moderate | Everyday exercise and activity |
| July 2019 | training horse almost every day plus light stable workNow, a year later, I'm capable of training my horse almost every day, as well as some very light stable workIn context ↗ | Mild | Everyday exercise and activity |
| Fall 2019 | got worse as daylight wentFall 2019 I got worse again as the daylight wentIn context ↗ | Moderate | |
| autumn 2020 | followed her own late sleep rhythm, active dailyMy step count for the last month is at like a 10k averageIn context ↗ | Mild | |
| early 2022 | hit a massive wall, mostly bed boundI hit a massive wall a few months ago and became more or less bed boundIn context ↗ | Severe | |
| June 2023 | a few hours of activity a week, new relationshipI'm not very severe at the moment but have been bed bound in the past. Now can handle a few hours of activity a weekIn context ↗ | Moderate |
Adverse events
- Sertraline (Zoloft)“I was on Zoloft for many years that definitely didn't do much after a while beyond giving me bad side effects.” In context ↗ Side effects
- Melatonin“I've tried melatonin before but it did nothing but give me awful hangovers” In context ↗ Side effects
- Melatonin“2mg gave me really fucking weird dreams and I'd wake up hungover at 6am.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If I exercise a little I feel great for a few hours then crash for a few days
In context ↗ - Brain fog
as soon as words get difficult my brain shuts down
In context ↗ - POTS & dysautonomia
I barely have any brain fog and get less dizzy when I stand up
In context ↗ - Sleep problems
I need over 10 hours of sleep but I struggle to sleep unless I've been up for ~16 hours
In context ↗ - Pain & fibromyalgia
Now I've lost every ounce of energy, my body hurts
In context ↗ - Headaches & migraine
Been feeling very ill with constant nausea and headaches for a week or so
In context ↗ - Gut problems
my digestion subpar to say the least, stomach is growling and hurting literally all the time
In context ↗ - Light & noise sensitivity
I have huge issues with sensory processing including taste and particularly texture and sound
In context ↗ - Muscle weakness
my mom had to saddle my horse for me because I didn't have the strength to lift my roughly 5kg saddle
In context ↗ - Anxiety & low mood
At my worst I've been truly suicidal
In context ↗ - Loss of smell or taste
I lost all taste and just couldn't bring myself to eat
In context ↗ - Temperature regulation
I'm constantly either freezing or scorching
In context ↗ - Vision problems
I struggle to focus my eyes without looking straight up
In context ↗
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