ME/CFS push/crash cycle and severe relapse, somewhat better with protein and a bed desk
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 12.5 years
- Last post
- May 2022
In their words
- Condition: ME/CFS
I've had me/CFS for 12-13 years now and got it when I was eighteen.
In context ↗ - At worst: Severe
Had to crawl to the couch and clamber up because my muscles decided they'd had enough.
In context ↗ - Now: Somewhat better
I do odd jobs for smaller companies while I write. I'm not independent in the way I would have been back in the day, but I don't have a boss and I do things at my own pace
In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Pelican 45675 became ill with ME/CFS at 18 and spent the first seven years pushing through college and work in a push/crash cycle. In 2017, while living abroad, they collapsed and had to crawl to the couch, a severe relapse. A Pfizer booster at the end of October 2021 reduced their stamina further and they had not recovered from it by late January 2022. Upping protein helped with energy, and using a rolling chair and bed desk gave more freedom of movement and less pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- melatonin · Not said
other than melatonin (which I started because I doubt my body produced enough as is), I don't take supplements
In context ↗ - upping protein intake · Helped
I'm upping my protein intake because I've notice some improvement after experimenting with diet
In context ↗ - rolling chair, overbed table and instant pot · Helped
Have a bit more freedoms of movement as a result, and not as much pain!
In context ↗ - journal to log symptoms · Not said
maintaining a journal to log symptoms and other things of the day
In context ↗ - deep breathing · Helped
Practicing deep breathing in daily life. I've found this helps mitigate some of the pain and onset of symptoms
In context ↗ - working within the mind's capacity · Not said
being okay with leaving something half-done for later, when you have the capacity to deal with it
In context ↗ - therapy · Helped
Going to therapy was good for me not just for the me/cfs but because my therapist helped me see I have PTSD
In context ↗ - COVID vaccination as treatment · Worse
Increased fatigue and more susceptible to other symptoms. My ability to stand also dimished as well as my ability to do as much as I had prior to the booster.
In context ↗
Approaches: CBT & mindset · Diet
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 |
|---|---|---|
| around age 18 (high school) | ME/CFS began in high schoolI've had me/CFS for 12-13 years now and got it when I was eighteen.In context ↗ | Mild |
| 2017 | collapsed in apartment abroad, had to crawl to couchI collapsed in my apartment. Had to crawl to the couch and clamber up because my muscles decided they'd had enough.In context ↗ | Severe |
| end of October 2021 | Pfizer booster worsened fatigue and standing abilityIncreased fatigue and more susceptible to other symptoms. My ability to stand also dimished as well as my ability to do as much as I had prior to the booster.In context ↗ | Moderate |
| February 2022 | more protein, rolling chair and bed desk; more energy and less painI've found more protein (balanced diet, but upping the protein) has helped me keep the weight and energy drops offIn context ↗ | Moderate |
| 2022-05-13 | doing odd jobs at own pace while writingI do odd jobs for smaller companies while I write.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“Increased fatigue and more susceptible to other symptoms. My ability to stand also dimished as well as my ability to do as much as I had prior to the booster.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I spent the first seven years in denial and living in a very toxic push/crash cycle
In context ↗ - Pain & fibromyalgia
Have a bit more freedoms of movement as a result, and not as much pain!
In context ↗ - Muscle weakness
my muscles decided they'd had enough
In context ↗ - Anxiety & low mood
my anxiety of holding on to a life I couldn't have was holding me back
In context ↗
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