ME/CFS
Moderate → no benefitIll for 12 years
Moderate ME/CFS with fatigue, PEM and brain fog, no benefit from LDN
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 12 years
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
I’ve had mild CFS since 2012, moderate since 2019
In context ↗ - At worst: Moderate
I’ve had mild CFS since 2012, moderate since 2019
In context ↗ - Now: No benefit
My main symptoms are constant fatigue, un refreshing sleep, insomnia, bad PEM, minor pains
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Otter 85152 has had mild CFS since 2012, becoming moderate from 2019 after playing basketball and forcing through the illness. By 2024 constant fatigue, bad PEM, unrefreshing sleep, insomnia, pain, brain fog and IBS limited them, and chronic anxiety stopped them working; they could still walk 3-5k steps daily. LDN up to 2 mg for a month had no noticeable effect; melatonin eased their anxiety.
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What they tried
Also tried
Their words about each treatment
- LDN · No change
Tried LDN and worked my way up to 2 mg and stayed on it for a month but had to stop when I travelled and never got back to it.
In context ↗ - pacing · Helped
My main symptoms are PEM (which is manageable with pacing)
In context ↗ - somatic practitioner · Not said
I’m working with a somatic practitioner on this, but it’s annoying at times because they view everything from a trauma lens
In context ↗ - meditation, voo breathing and other breathing exercises · Worse
Stuff like 4-2-6 breathing makes me feel worse at times because of the exertion and interrupting the flow of what the body wants to do.
In context ↗ - melatonin · Helped a lot
Taking melatonin has been a game changer for me to calm my anxiety and eventually overpower the tired + wired state.
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 |
|---|---|---|
| 2012 | mild CFS beginsI’ve had mild CFS since 2012In context ↗ | Mild |
| 2019 | pushed through illness with basketball; baseline much worsemoderate since 2019 (I played a lot of basketball and tried to force my way through the illness and that’s what made my baseline much worse)In context ↗ | Moderate |
| 2024-09-23 | still walking 3-5k steps daily, making oatmeal, playing chess; stopped workingI can still walk 3-5k steps daily at a slow pace and make oatmeal for myselfIn context ↗ | Moderate |
Adverse events
- Meditation, yoga, breathwork“Stuff like 4-2-6 breathing makes me feel worse at times because of the exertion” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Sleep problems
un refreshing sleep, insomnia
In context ↗ - Brain fog
Also have brain fog
In context ↗ - Gut problems
Also have brain fog, IBS, soreness etc.
In context ↗ - Anxiety & low mood
chronic anxiety/stress over the last decade
In context ↗ - Breathlessness
my breath is very shallow
In context ↗ - Heart symptoms & palpitations
I have been to the ER twice with chest pain- ruled out heart and lung stuff.
In context ↗