Moderate-severe ME/CFS with crashes, somewhat better with pacing and a cane
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I’m at the point where I need a cane occasionally (which also helps when I’m in a ME/CFS flare up)
In context ↗ - At worst: Moderate
has had me firmly stuck in moderate-severe with crashes lasting for a couple weeks to several months
In context ↗ - Now: Somewhat better
I’m managing fairly well. ... I’m only dealing with a flare of my sciatic neuropathy this weekend!
In context ↗ - Began after: nothing they could name
I can’t quite pinpoint it because I was always getting some virus or infection from pretty much the time I was born.
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Pond 84425 was diagnosed with ME/CFS at 19 and was mild until college, when autonomic issues pushed her to moderate. A 2017-2018 kidney stone, sepsis and four days in ICU, then COVID in autumn 2020, left her stuck at moderate-severe with crashes lasting weeks to months. By 2026 she was managing fairly well, pacing with the Visible app and using a shower bench, bar stool and folding cane, though still limited by pain.
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What they tried
What they credit
Their words about each treatment
- Visible app and band · Helped
I started using the Visible app in January 2025, and I got the band in October last year to help with my pacing
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| onset | ME/CFS onset, diagnosed at 19; mild for yearsMy doctor diagnosed me at 19. I was considered mild until my junior year of collegeIn context ↗ | Mild | |
| junior year of college | autonomic issues pushed them from mild to moderatedealt with a few autonomic issues as well that pushed me into moderateIn context ↗ | Moderate | |
| 2017/2018 | kidney stone, hydronephrosis and sepsis; stent surgery and 4 days in ICUThen in 2017/2018, I got a kidney stone, developed hydronephrosis, and I was septic.In context ↗ | Severe | |
| fall of 2020 | COVID then further stressors left them stuck at moderate-severe with long crashesAdditional stressors over the last 5 years including getting COVID in the fall of 2020 has had me firmly stuck in moderate-severe with crashes lasting for a couple weeks to several monthsIn context ↗ | Moderate | |
| 2026-06-20 | managing fairly well with pacing and mobility aids; occasional cane, still has pain and flaresI’m at the point where I need a cane occasionally (which also helps when I’m in a ME/CFS flare up)In context ↗ | Moderate | Symptom-tracking apps and wearables (Visible) |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
crashes lasting for a couple weeks to several months
In context ↗ - POTS & dysautonomia
dealt with a few autonomic issues as well that pushed me into moderate
In context ↗ - Pain & fibromyalgia
I actually have had fibromyalgia for as long if not longer than my mom has had it.
In context ↗ - Headaches & migraine
chronic pain/migraines/scoliosis since I was 12
In context ↗ - Neuropathy & tingling
I’m only dealing with a flare of my sciatic neuropathy this weekend!
In context ↗ - Light & noise sensitivity
I have a molded sleep mask and it helps so much with completely blocking light out.
In context ↗ - Anxiety & low mood
I have ADHD, major depressive disorder, general anxiety disorder, and borderline personality disorder
In context ↗
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