Largely bedbound with ME/CFS for three months, now somewhat better with rest and keto
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 months
- Last post
- Jul 2020
In their words
- Condition: ME/CFS
Lucky I landed into 'moderate' rather than 'severe' CFS territory, which still can mean 'mostly bed-ridden' on bad week(s)
In context ↗ - At worst: Moderate
I'm still mostly housebound: I can't make more than trivial 5-ish minute trips outside to the convenience store.
In context ↗ - Now: Somewhat better
Yet over time with patient rest, I found the 'even getting a drink is a marathon' effect has slowly receded. Now I can play video games once in a while and small things like that.
In context ↗ - Began after: stress or burnout
I ignored my bodily signals, exercised too much, and started a physically active job just assuming I'd be fine
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
A Reddit user in r/cfs dated symptoms from November and had a point-of-no-return crash on 6 March that forced them to quit a physically demanding job; the first three months left them largely bedbound. In late June 2020 they were still mostly housebound, limited to about five-minute trips outside. Patient rest had slowly eased the worst, and a keto diet gave an immediate lift, letting them clean their room with little crash.
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What they tried
What they credit
Also tried
Their words about each treatment
- LSD · Helped a lot
managed to turn it around after LSD literally cured me as if it were a magical healing spell
In context ↗ - intense exercise regiment · Much worse
if I didn't keep restoring exercise after crashes, I wouldn't be in the severe-ish spot I am in now
In context ↗ - meditation and deep breathing · Helped
I always stress that deep breathing and relaxation meditation can be helpful
In context ↗ - CBT · Helped
CBT-like therapies should not be thrown entirely out the window
In context ↗ - Q10 · Helped
daily >1000mg doses of Q10 have plausibly helped me
In context ↗ - omega 3 · Not said
various supplements (>1000mg doses of Q10, omega 3, l-theanine if you happen to be a caffeine user, etc.)
In context ↗ - l-theanine · Not said
>1000mg doses of Q10, omega 3, l-theanine if you happen to be a caffeine user, etc.
In context ↗ - healthy diet · Helped
A good diet helps.
In context ↗ - keto diet · Helped
A keto diet helped me even more
In context ↗ - weed · Helped
spamming weed helps various side effects, particularly for me it removes all the related GI issues
In context ↗ - Kratom · Helped
Kratom is a good symptom overlay on certain days, not a treatment however.
In context ↗ - Modafinil · Helped
aside from Kratom and Modafinil--the only thing that has an immediate quality of life improvement for me
In context ↗ - pacing · Helped
I wish I had listened to the pacing advice early on ... If I had done all this immediately, I could be in remission by now for all I know.
In context ↗ - pre-emptive rest · Worse
if I actually force myself to rest, it begets more rest and I actually feel sicker than if I do just a little bit of extremely light activity
In context ↗
Approaches: CBT & mindset · Diet · Mind-body practices · Pacing · Stimulants · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| November 2019 | symptoms began while working a physically demanding jobthe symptoms were showing as early as November, with small episodic crashes for years prior to thatIn context ↗ | |
| 6 March 2020 | point-of-no-return crash; quit physically active jobMy 'point of no return' crash was March 6th--which forced me to quit my physically active jobIn context ↗ | |
| June 2020 | bedbound phase slowly receded with patient rest; could play video games occasionallyover time with patient rest, I found the 'even getting a drink is a marathon' effect has slowly receded ... I can't make more than trivial 5-ish minute trips outside to the convenience storeIn context ↗ | Pacing and the energy envelope |
| 1 July 2020 | crashed after reading a few chapters of a bookI was doing okay this week until I dared to read a few chapters of this book, and now I'm paying the priceIn context ↗ | |
| 21 July 2020 | restarted keto diet and cleaned room without much of a crashI recently went back on it and was able to thoroughly clean my room for the first time since April, with not really much of a crash in the days after.In context ↗ | Keto and low-carb diets |
| 22 July 2020 | still careful with every thought and feelingNow I have to be careful with every thought, feeling, attitude.In context ↗ |
Adverse events
- Everyday exercise and activity“if I didn't keep restoring exercise after crashes, I wouldn't be in the severe-ish spot I am in now” In context ↗ Made symptoms worse
- Radical rest“I find that pre-emptive rest is more negative than positive ... I actually feel sicker than if I do just a little bit of extremely light activity” In context ↗ Made symptoms worse
- Radical rest“Bed rest itself increases muscle pain for me.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I was doing okay this week until I dared to read a few chapters of this book, and now I'm paying the price
In context ↗ - Brain fog
the extreme muscle tiredness and 'cognitive blanking out' can be pretty impactful
In context ↗ - Muscle weakness
less heart racing, less shortness of breath, and less muscle weakness
In context ↗ - Heart symptoms & palpitations
for me comes with less heart racing, less shortness of breath
In context ↗ - Breathlessness
less shortness of breath
In context ↗ - Headaches & migraine
Headaches may accompany this too.
In context ↗ - Gut problems
particularly for me it removes all the related GI issues
In context ↗ - Pain & fibromyalgia
Bed rest itself increases muscle pain for me.
In context ↗ - Sleep problems
my non-24 sleep schedule could never adapt to properly
In context ↗ - Anxiety & low mood
When this all initially landed on me, I was so stressed and depressed.
In context ↗ - Flu-like symptoms
I don't feel like I'm about to die of a horrible flu anymore
In context ↗
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