ME/CFS
Moderate → no benefit
ME/CFS brain fog, push-crash cycles and PEM, still had PEM after pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- May 2023
In their words
- At worst: Moderate
It made it possible for me to do more, but I evoked crashes this way and didn't realise it.
In context ↗ - Now: No benefit
When I'm able to stay closer to my baseline for a while, this goes away.
In context ↗
Summary
A Reddit user with ME/CFS described brain fog, push-crash cycles and PEM symptoms, sometimes even while already lying down. They cut back on Adderall because it let them do more but set off crashes they had not noticed. They said learning about pacing helped protect their boundaries, and recommended an expensive Fitbit Sense for heart-rate alerts. By May 2023 they still had PEM.
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What they tried
Also tried
Their words about each treatment
- pacing · Helped
What helps for me is learning (when ok to watch you tube or read a little bit) about the science behind push/crash cycle and pacing.
In context ↗ - adderall · Worse
I realised I had to cut back on taking adderall, for example. It made it possible for me to do more, but I evoked crashes this way and didn't realise it.
In context ↗ - TRE (Trauma and tension release exercises) · Helped
It's a set of 7 excercises to evoke a tremor ... The 2nd exercise this practitioner shows in this video is helpful
In context ↗ - Fitbit Sense · Helped
I have a Fitbit Sense. Can recommand. Expensive, but really worth it for me.
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 |
|---|---|
| — | ME/CFS with push-crash cycles and brain fogWhat helps for me is learning (when ok to watch you tube or read a little bit) about the science behind push/crash cycle and pacing.In context ↗ |
| 2022-07-05 | crashes from Adderall useI realised I had to cut back on taking adderall, for example. It made it possible for me to do more, but I evoked crashes this way and didn't realise it.In context ↗ |
| 2023-05-01 | still getting PEM freezing and numbnessWhen I'm able to stay closer to my baseline for a while, this goes away.In context ↗ |
Adverse events
- Amphetamine salts (Adderall)“It made it possible for me to do more, but I evoked crashes this way and didn't realise it.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
To me, this is part of PEM.
In context ↗ - Brain fog
even when I have too much brain fog going on
In context ↗ - Neuropathy & tingling
To me, this is part of PEM. ... Sometimes I get it when I'm already lying down
In context ↗ - Muscle weakness
our muscles are already fatigued
In context ↗ - Anxiety & low mood
feel frustrated and sad
In context ↗