ME/CFS
Somewhat better
ME/CFS week-long crashes after diagnosis, a bit better after lower Vyvanse and pacing app
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Sep 2024
In their words
- Condition: ME/CFS
I have ADHD and regularly take Vyvanse, when I was diagnosed with CFS.
In context ↗ - Now: Somewhat better
as I was able to improve my energy a bit
In context ↗
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
A person with ME/CFS and ADHD said the illness was at its worst in the first two years after diagnosis, when their usual Vyvanse stopped working as before. Raising the Vyvanse dose made them crash harder, with week-long flare-ups, so the dose was lowered and they used the Visible app to learn pacing. Their energy had improved a bit by early 2024, though a month-long Reha gave only homeopathic remedies.
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What they tried
Also tried
Their words about each treatment
- pacing · Not said
have started getting guidance more on pacing. Which is really feeling almost impossible
In context ↗ - Visible · Helped
the app called Visible is super helpful in tracing and taking daily checking
In context ↗ - escitalopram · Helped
my escitalopram they tried to increase once but it made me fall into a horrible dark hole
In context ↗ - Vyvanse · Worse
my vyvanse didn’t have much of an effect as previously ... my doctor tried to increase the Vyvanse ... but it just made me crash harder
In context ↗ - homeopathic options · No change
they had me take all of the homeopathic options except for actually medicines..very German, very inefficient
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 |
|---|---|
| onset | diagnosed with CFS (they describe it as autoimmune-based); already on Vyvanse for ADHDI have ADHD and regularly take Vyvanse, when I was diagnosed with CFS.In context ↗ |
| first 2 years after diagnosis | illness at its worst; Vyvanse no longer worked as beforeWhen the illness was at its worse (first 2 years after diagnosis) my vyvanse didn’t have much of an effect as previouslyIn context ↗ |
| — | energy improved a bitas I was able to improve my energy a bitIn context ↗ |
| — | crashed harder after doctor raised the Vyvanse dose; week-long flare-upsmy doctor tried to increase the Vyvanse to see if it would help a bit more but it just made me crash harderIn context ↗ |
| 2024-02-11 | Vyvanse dose lowered so it would not override pacing; energy a bit betterI ended up having them lower the dose because it was allowing me to overuse a fake amount of energyIn context ↗ |
Adverse events
- Escitalopram (Lexapro)“my escitalopram they tried to increase once but it made me fall into a horrible dark hole” In context ↗ Mood or psychiatric effects
- Escitalopram (Lexapro)“in the past testing antidepressants has been really rough” In context ↗ Side effects
- Lisdexamfetamine (Vyvanse, Elvanse)“my doctor tried to increase the Vyvanse to see if it would help a bit more but it just made me crash harder” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“it was allowing me to overuse a fake amount of energy-really negated my pacing which ultimately led to a crash (sometimes a week long flair up)” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
allowing me to overuse a fake amount of energy ... ultimately led to a crash
In context ↗ - Anxiety & low mood
I woke up one day and the invisible overwhelming weight I had been carrying just felt..a bit more manageable
In context ↗