ME/CFS with constant fatigue and brain fog, improved with working from home then relapsed
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 11 years
- Last post
- Apr 2020
In their words
- Condition: ME/CFS
I've had CF since I was 18 and developed mono.
In context ↗ - At worst: Mild
Most of the time I'm operating at about 50%
In context ↗ - Now: Relapsed
my health has done a complete 180 ... it feels like I'm slipping more and more each day
- Began after: glandular fever or EBV
I've had CF since I was 18 and developed mono.
In context ↗
Read from 11 of their posts and comments; links to the 7 this page draws on
Summary
Dune 78900 developed chronic fatigue at 18 and also developed mono, with constant fatigue and brain fog through much of their early twenties. A half-year remission at 24 ended after a minor bike accident, and at Mayo they were diagnosed with chronic fatigue and fibromyalgia. Working from home in early 2019 brought a turn-around with no fatigue days, but by April 2020 they were crashing hard monthly and could do far less than three years earlier.
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What they tried
What they credit
Also tried
Their words about each treatment
- Vitamin D supplements · Not said
I take daily Vitamin D supplements and a B12 complex but as I'm aging I'm finding the peaks are few and far between.
In context ↗ - cane · Helped
I use a cane on my fatigue days (I am relatively high-functioning) and it has made a world of difference.
In context ↗ - major antifungals · No change
I've been on major antifungals as well as steroids for my colitis. None seem to help much, unfortunately.
In context ↗ - working from home · Helped a lot
I am now working comfortably from home, and because I'm no longer frantic and stressed about my commute my health has done a complete 180.
In context ↗ - moving air · Helped
I find that having moving air pointed at me is enough to control it
In context ↗ - Benadryl · Helped
I've found taking a Benadryl is helpful.
In context ↗
Approaches: 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 |
|---|---|---|
| age 18 | chronic fatigue began after monoI've had CF since I was 18 and developed mono.In context ↗ | Mild |
| age 24 | half-year remission; got in shape and wrote prolificallyAt 24 I was diagnosed with IBS and I had a half-year remission. I got in shape, wrote a series that went viralIn context ↗ | Near normal |
| after age 24 | tanked after a minor bike accident; a month of severe nerve pain, then a two-year search for answersThen I tanked after a minor bike accident.In context ↗ | Mild |
| 2018-10-10 | new symptoms: sudden overwhelming need to sleep, passing out at work, joint painMost of the time I'm operating at about 50%In context ↗ | Mild |
| 2019-03-30 | health did a complete 180 after starting work from home; no fatigue days, three weeks of overtimemy health has done a complete 180In context ↗ | Near normal |
| 2020-04-07 | hard crashes about once a month, almost no physical activity, able to do less than three years earlieronce every month or so I crash HARD and end up on my ass for a few daysIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Brain fog
Most of my early 20s were spent in a constant state of fatigue and brain fog.
In context ↗ - Sleep problems
I have periodic moments throughout the day where I am suddenly overwhelmed by the ABSOLUTE NEED to sleep.
In context ↗ - Pain & fibromyalgia
I was finally diagnosed with CF and fibromyalgia
In context ↗ - Gut problems
I'm also experiencing a lot of limb nausea and sporadic pain in my joints.
In context ↗ - Neuropathy & tingling
For about a month I suffered with excruciating neurological pain on the left side of my back.
In context ↗ - Temperature regulation
I have problems with heat sensitivity and tend to get overheated easily when I'm fatigued.
In context ↗
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