ME/CFS
Outcome unclear
ME/CFS with cold feet, cramps and crashes; tried supplements and heart-rate tracking
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- May 2020
In their words
- Condition: ME/CFS
my crashes are usually represented in the graphs as well as the multi-day recovering process
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Reddit user in r/cfs who for years reported cold feet needing an electric heating blanket all day, stomach cramps that kept them from sleeping, and crashes taking days to recover from. They followed a Myhill supplement protocol and felt it helped a little, and rated a Polar H10 heart-rate strap with the SweetBeat app among their best tools for managing the illness. A graded exercise and CBT programme left them a lot worse.
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What they tried
Also tried
lemon juice· Helped · wore offelectric heating blanket· Helpedsupplements (vitamins, minerals, mitochondria support) recommended by Dr Myhill· HelpedH10 polar strap and sweetbeat app· HelpedGET (in a GET&CBT program)· Much worseCBT (in a GET&CBT program)· Not said
Their words about each treatment
- lemon juice · Helped
some lemon juice for the stomach cramps that often led to very little sleep. ... early on this had a decent impact on daily life.
In context ↗ - electric heating blanket · Helped
got an electric heating blanket for my feet. i use it all day long, even during warm summer days, my feet get really cold otherwise.
In context ↗ - supplements (vitamins, minerals, mitochondria support) recommended by Dr Myhill · Helped
I've only followed her recommendations about supplements (vitamins, minerals, mitochondria support) so far, and I'd like to think they help a little bit.
In context ↗ - H10 polar strap and sweetbeat app · Helped
H10 polar strap and the sweetbeat app (on iOS only) are among the best tools i have for managing this illness.
In context ↗ - GET (in a GET&CBT program) · Much worse
i got a lot worse with a GET&CBT program where my envelope got overstepped daily.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2018-07-27 | followed Myhill supplement recommendationsI've only followed her recommendations about supplements (vitamins, minerals, mitochondria support) so far, and I'd like to think they help a little bit.In context ↗ | |
| 2019-02-17 | began nightly HRV tracking to manage crashesH10 polar strap and the sweetbeat app (on iOS only) are among the best tools i have for managing this illness.In context ↗ | Symptom-tracking apps and wearables (Visible) |
| 2020-05-04 | crashed daily in a GET and CBT programmei got a lot worse with a GET&CBT program where my envelope got overstepped daily.In context ↗ | Graded exercise therapy (GET) |
| 2020-05-04 | still ill after the GET/CBT setback |
Adverse events
- Graded exercise therapy (GET)“i got a lot worse with a GET&CBT program where my envelope got overstepped daily.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Temperature regulation
my feet get really cold otherwise
In context ↗ - Gut problems
some lemon juice for the stomach cramps that often led to very little sleep.
In context ↗ - Sleep problems
stomach cramps that often led to very little sleep
In context ↗ - Post-exertional malaise
my crashes are usually represented in the graphs as well as the multi-day recovering process.
In context ↗