Confined to the house with ME/CFS, much better after a programme and steroid nasal spray
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- May 2020
In their words
- Condition: ME/CFS
Having had CFS for at least 3 years where I’ve had constant tests and “nothing” was wrong
In context ↗ - At worst: Severe
I was confined to the house and rested all day because I burnt myself out a few months before. ... I went from unable to leave the house to actually being able to do things.
- Now: Much better
I still have PEM every week or so but I’m doing 5 days a week (or 4 as my body dictates). ... I still get PEM when I push myself but the oxygen finally reaching my brain has done wonder.
- Began after: mould or toxic exposure
I had a mould issue 3 years ago that coincided with my asthma starting, and constant “colds”, or you know, my CFS.
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Alpine 37473 had CFS for at least three years, with severe dust-mite allergy and a swollen nose that blocked breathing at night. After burning out, they were confined to the house and rested all day. They credited a programme with changing their life and a steroid nasal spray with letting them leave the house and do things again, though they still got PEM when they pushed.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- UNSW Fatigue Clinic program · Helped a lot
It has honestly changed my life.
In context ↗ - GET · Helped
They do GET later with you and it’s worth a shot ... can get up and move now
In context ↗ - graded ‘exposure’ therapy / working within limits · Helped
They emphasise that you DONT push yourself. ... I can now say no to things, say no to myself
- yoga · Not said
Or doing yoga in a capacity that works for me.
In context ↗ - prescription steroid nasal spray · Helped a lot
I went from unable to leave the house to actually being able to do things.
In context ↗ - antihistamines · Not said
I’m just glad I finally don’t need antihistamines everyday.
In context ↗
Approaches: CBT & mindset · Other drugs and medicines · 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. The chart starts 2.5 years 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 |
|---|---|---|
| around 2017 | CFS began after a mould issueI had a mould issue 3 years ago that coincided with my asthma starting, and constant “colds”, or you know, my CFS.In context ↗ | Not stated |
| a few months before January 2020 | burnt out and confined to the houseI was confined to the house and rested all day because I burnt myself out a few months before.In context ↗ | Severe |
| January 2020 | fatigue-clinic programme; able to get up and move, doing 5 days a weekIt has honestly changed my life ... I’m doing 5 days a week (or 4 as my body dictates).In context ↗ | Mild |
| May 2020 | nose under control; able to leave the house and do things; still PEM when pushingI went from unable to leave the house to actually being able to do things. I still get PEM when I push myselfIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still get PEM when I push myself
In context ↗ - Brain fog
my brain is feeling clearer
In context ↗ - Mast cell (MCAS) & allergies
I’m quite allergic to dust mites which significantly contributed to my ME.
In context ↗ - Sleep problems
nightly trips to the bathroom with unrefreshed sleep
In context ↗ - Breathlessness
Severe allergies to dust mites has stopped me from breathing properly when I sleep
In context ↗ - Anxiety & low mood
exacerbated my anxiety
In context ↗ - Neuropathy & tingling
to stop the tingling/itching
In context ↗
Ask Miruvor AI
Similar stories
-
Housebound with long COVID, now much better and back at work after rest and acupuncture
An Australian academic in their forties got long COVID in May 2024 after a third infection: brain fog first, then crippling fatigue that left them housebound and crashing daily for months. Rest, time and treatments including acupuncture greatly improved…
-
Bedridden with ME/CFS, reached 70%, then relapsed to semi-severity
A German man became bedridden with ME/CFS at 18 after Epstein-Barr, with a pulse over 120, severe POTS and dementia-like cognitive symptoms. Over 5½ years of pacing, breathing exercises, cat's claw, glutathione IVs, hormones, rTMS and slow…
-
Long COVID pain and pooling at six years, somewhat better with pentoxifylline and kratom
Six years into long COVID, with a pain- and pooling-dominated neurovascular subtype, they tried many drugs, supplements, diets and therapies without luck. Pentoxifylline and the hepatitis C antiviral Ledifos helped pain and pooling, and kratom further cut…
-
Mostly bedbound with ME/CFS, now somewhat better with pacing and graded activity
Diagnosed with ME/CFS around 2012 and mostly bedbound in 2015, they rebuilt slowly with pacing and graded activity, staying under the crash line. They call themselves partially recovered and moderate: able to work part-time and manage one or two six-mile…