House-ridden with ME/CFS for years, now somewhat better but crashes after walking
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Feb 2019
In their words
- Condition: ME/CFS
I've recently been diagnosed with CFS/ME after 10+ years of symptoms
In context ↗ - At worst: Moderate
Pretty much house-ridden for a few years
In context ↗ - Now: Somewhat better
I've been all over the scale but at least now I can do some normal things
In context ↗ - Began after: another virus
Started after a bout of illness like bad gastro that happened overnight
Summary
A UK user in their late twenties was diagnosed with CFS/ME in 2019 after 10+ years of symptoms that began with an overnight gastro-type illness. They were largely house-ridden for several years, then built a normalish working life before a relapse around year ten. By early 2019 they worked entirely from home and could walk distances, but crashed for days afterwards; they said doctors had fobbed them off with anxiety meds and CBT for years before diagnosis.
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What they tried
Also tried
Their words about each treatment
- anxiety meds · Not said
9 years of Doctors fobbing me off with anxiety meds and CBT!
In context ↗ - avoiding onion, garlic, lactose, gluten · Not said
I avoid onion, garlic, lactose, gluten as much as possible
In context ↗ - loperamide (imodium) · Helped
loperamide (imodium) definitely gives me a boost in energy if I take enough.
In context ↗ - mealprepping · Helped
I've found mealprepping to be really helpful
In context ↗
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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| Year 1 | onset after overnight gastro-type illnessStarted after a bout of illness like bad gastro that happened overnight, slowly got better after a few weeks but not back to usual levelsIn context ↗ | Not stated |
| Year 2-5 | house-ridden for a few yearsPretty much house-ridden for a few yearsIn context ↗ | Moderate |
| Year 6-9 | fought through and built a normalish working lifeFought through, lived a normalish life just by doing everything to make my career possibleIn context ↗ | Mild |
| Year 10 | relapse after changing jobsYear 10: "Relapse", changed jobs, tried flexible working, now working entirely from homeIn context ↗ | Mild |
| January 2019 | working from home, can do some normal things but crashes after exertionI've been all over the scale but at least now I can do some normal things.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can walk distances if needed, but that night, and the following few days, the post-exertional malaise is killer.
In context ↗ - Brain fog
it's hard to concentrate on a task for more than a few minutes unless I'm really engaged
In context ↗ - POTS & dysautonomia
Dizzy spells/fainting - Told it's basically a form of POTS that most CFS'ers have
In context ↗ - Sleep problems
I can regularly sleep for 12, 13, 14 hours
In context ↗ - Gut problems
IBS-D - Onset at the same time as my initial illness.
In context ↗ - Light & noise sensitivity
Can't handle loud environments, like the 'hubbub' of bars/restaurants, or the tube.
In context ↗ - Temperature regulation
Temperature regulation is off whack, I'm either cold or hot, never just fine.
In context ↗ - Headaches & migraine
Migraines - They come and go, I can go months without one, then I'll get a bout
In context ↗ - Anxiety & low mood
hence fear of anxiety ontop of feeling drained and dealing with the IBS
In context ↗