Five years of ME/CFS from teens, now nearly normal on Concerta XL
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 years
- Last post
- Oct 2022
In their words
- Condition: ME/CFS
I was diagnosed at 13 with chronic fatigue syndrome
In context ↗ - At worst: Moderate
it was debilitating and affected me a lot. I ended up missing loads of school and stopped all of my activities
In context ↗ - Now: Near normal
i do believe my medication got rid of pretty much all of my cfs symptoms, i still have a few relapses of tension headaches
In context ↗
Summary
Diagnosed with CFS at 13, they missed school and dropped activities, then improved over years to a normal life but never fully recovered. At 17 an ADHD diagnosis led to Elvanse, which did not help and made them worse, then Concerta XL 54 mg, which they credit with curing their CFS after five years of tiredness. A two-week break from the stimulant did not bring the fatigue back; occasional tension headaches remained.
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What they tried
What they credit
Their words about each treatment
- changing my activities · No change
my treatment for CFS by the NHS was changing my activities and talking therapy, it felt like I was learning to live with it rather than get better
In context ↗ - Elvanse (vyvanse) · Worse
my cfs symptoms were not relieved on elvanse at all, and just like you were made worse
In context ↗ - Concerta XL · Helped a lot
I’m now on 54mg Concerta and have been for the past 6 months and I can genuinely say it has cured my CFS.
In context ↗
Approaches: Stimulants
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 13 | Diagnosed with CFS; missed school and stopped all activitiesI was diagnosed at 13 with chronic fatigue syndrome, it was debilitating and affected me a lot. I ended up missing loads of school and stopped all of my activities.In context ↗ | Moderate |
| — | Gradual partial improvement back to a normal life, never fully recoveredOver time I got a little better and gradually returned back to my normal lifeIn context ↗ | Mild |
| age 17 | Tried Elvanse for a month; CFS symptoms not relieved and made worsemy cfs symptoms were not relieved on elvanse at all, and just like you were made worseIn context ↗ | Mild |
| 2022 | On 54 mg Concerta XL for six months, CFS symptoms gone and energy backI’m now on 54mg Concerta and have been for the past 6 months and I can genuinely say it has cured my CFSIn context ↗ | Near normal |
Adverse events
- Lisdexamfetamine (Vyvanse, Elvanse), Methylphenidate (Ritalin, Concerta)“when I had incorrect doses (particularly higher doses) it ended up in a bad CFS crash.” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“my cfs symptoms were not relieved on elvanse at all, and just like you were made worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
never feeling refreshed after sleep
In context ↗ - Brain fog
cognitive impairment (brain fog, horrific memory etc)
In context ↗ - Headaches & migraine
i still have a few relapses of tension headaches
In context ↗
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