ME/CFS with POTS and chronic pain, 8 work hours a week, improved on Ritalin then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Nov 2024
In their words
- At worst: Moderate
I was struggling to work 8 hours a week when I was put on them
In context ↗ - Now: Relapsed
I got better and better in that time ... Unfortunately I got switched to Dexamphetamine by my Doctor and had a bad reaction and now I can’t access any stimulants at all.
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with POTS and chronic pain who was struggling to work eight hours a week improved steadily over two months on Ritalin, reaching 30 hours a week. After a switch to dexamphetamine caused a bad reaction, they lost access to stimulants entirely. Atomoxetine, the replacement, did little for their fatigue, POTS or ADHD but eased chronic pain somewhat.
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What they tried
What they credit
Also tried
Their words about each treatment
- herbs in the formula · No change
I’ve already tried a few of the herbs in the formula and didn’t make much of a difference.
In context ↗ - Ritalin · Helped a lot
I got better and better in that time, I was struggling to work 8 hours a week when I was put on them and by the end of 2 months I was working 30 hours a week.
In context ↗ - Dexamphetamine · Worse
Unfortunately I got switched to Dexamphetamine by my Doctor and had a bad reaction
In context ↗ - atomoxetine · Helped
Atomoxetine helps my chronic pain somewhat so I am able to do a bit more without ending up in extreme pain the next day
In context ↗ - Adderall · Worse
Adderall made me worse.
In context ↗ - Mestinon · Much worse
Mestinon made me so sick. ... I ended up having symptoms of a cholinergic crisis
In context ↗ - other cholinergic meds · Not said
although I am on other cholinergic meds as well
In context ↗
Approaches: Stimulants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | struggling to work only 8 hours a week, pain the next day after activityI was struggling to work 8 hours a week when I was put on themIn context ↗ | Moderate |
| 2024-11-06 | steadily better over two months on Ritalin, working up to 30 hours a weekI got better and better in that time ... and by the end of 2 months I was working 30 hours a weekIn context ↗ | Mild |
| 2024-11-06 | bad reaction after switching to dexamphetamine, then no stimulants allowedUnfortunately I got switched to Dexamphetamine by my Doctor and had a bad reaction and now I can’t access any stimulants at allIn context ↗ | Moderate |
| 2024-11-07 | on atomoxetine, still limited by fatigue, POTS and chronic pain, living in noise-blocking headphones at homeI’m on atomoxetine it doesn’t do much for my ADHD and it doesn’t do much for my fatigue/ POTS either.In context ↗ | Moderate |
Adverse events
- Methylphenidate (Ritalin, Concerta), Dexamfetamine (Dexedrine)“I got switched to Dexamphetamine by my Doctor and had a bad reaction” In context ↗ Side effects
- Amphetamine salts (Adderall)“Adderall made me worse.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“Mestinon made me so sick. ... I ended up having symptoms of a cholinergic crisis” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
so I am able to do a bit more without ending up in extreme pain the next day
In context ↗ - POTS & dysautonomia
it doesn’t do much for my fatigue/ POTS either
In context ↗ - Pain & fibromyalgia
Atomoxetine helps my chronic pain somewhat
In context ↗ - Light & noise sensitivity
I’m very sensitive to even the slightest amount of noise
In context ↗ - Anxiety & low mood
They came to my house also after I took an OD.
In context ↗
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