ME/CFS
Moderate → no benefitIll for 5.5 years
ME/CFS after a viral infection, still at home resting most of the time
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 5.5 years
- Last post
- Jul 2020
In their words
- Condition: ME/CFS
Ever since I got cfs, my nose is never fully clear
In context ↗ - At worst: Moderate
I stopped going to school all together as it got progressively worse. Then luckily enough, I got home schooled. ... Im 19 now and I can't remember what it feels like to have normal energy.
In context ↗ - Now: No benefit
Im 19 now and I can't remember what it feels like to have normal energy. I've just turned to accepting this as the norm for now.
In context ↗ - Began after: another virus
I got a viral infection. That itself only lasted a few days
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
Kestrel 49830 fell ill suddenly on 17 March 2015, at age 15, after a short viral infection, and has had CFS since, roughly five years by mid-2020. They had exhaustion, weakness, low iron, IBS symptoms and inflamed throat glands; as symptoms progressed they stopped school, were home schooled and passed final exams with a scribe. They remain at home, resting most of the time, and describe accepting this as the norm.
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What they tried
Also tried
tablets for inflamed throat glands· Helped · wore offbaths instead of showers· Helpedelevating legs while on the toilet· Helpedeating a kiwi every day· Helpediron tablets· No changeointments for hemorrhoids· No changesinus sprays· Worsetablets for a virus/flu· Not saidpacing / limiting activity· Not said
Their words about each treatment
- tablets for a virus/flu · Not said
I remember being sick (some virus or flu?), I think I was on tablets for it.
In context ↗ - iron tablets · No change
I was low on iron so I went on tablets for that. ... Hoped I’d be better after that but no, more symptoms started to appear as time went on.
- tablets for inflamed throat glands · Helped
Used to be so bad, I’d be given tablets that would only calm it down temporarily and then a few weeks later, they’d be inflamed again.
In context ↗ - pacing / limiting activity · Not said
I try to limit myself to 2hrs but I often go over it & end up being even more exhausted.
In context ↗ - sinus sprays · Worse
I have tried sinus sprays but it doesn't work for long and they irritate my nose.
In context ↗ - baths instead of showers · Helped
Yes, I changed to having baths instead of showers. ... Can rest a bit in the bath and can easily do hair as well if needed.
In context ↗ - ointments for hemorrhoids · No change
I tried ointments etc and they wouldn’t fight it off for long before it came back.
In context ↗ - elevating legs while on the toilet · Helped
I sometimes use something to elevate my legs while in the bathroom. I also started trying to eat a kiwi everyday and since then, I have found it much easier to go to the bathroom.
In context ↗ - eating a kiwi every day · Helped
I also started trying to eat a kiwi everyday and since then, I have found it much easier to go to the bathroom.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 17 March 2015 | sudden onset after a short viral infectionI remember being sick (some virus or flu?) ... After the initial virus/flu went away, I never felt 100% normal.In context ↗ | Moderate |
| 2016 | stopped going to school as the illness got worseI stopped going to school all together as it got progressively worse.In context ↗ | Moderate |
| 2018 | home schooled and passed final school exams with a scribeI got home schooled. Fast forward another year and a half- I passed my final exams of school with a scribe.In context ↗ | Mild |
| 2019-08-27 | at home, resting most of the time, pacing video games at about two hoursI'm at home with my family so I am able to rest most of the time ... I've just turned to accepting this as the norm for now.In context ↗ | Mild |
Adverse events
- “I have tried sinus sprays but it doesn't work for long and they irritate my nose.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
I began feeling exhausted and weak all the time.
In context ↗ - Post-exertional malaise
I try to limit myself to 2hrs but I often go over it & end up being even more exhausted.
In context ↗ - Sleep problems
I try to not sleep during the day since I feel even worse for the first hour I wake up.
In context ↗ - Gut problems
I started having ibs symptoms.
In context ↗ - Flu-like symptoms
I do get bouts of trouble with my throat being inflamed at times.
In context ↗