ME/CFS, sleeping 16-20 hours a day, somewhat better with Adderall and Feldenkrais
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Apr 2023
In their words
- Condition: ME/CFS
I've been taking Adderall for ADHD/CFS for ~10 years now
In context ↗ - At worst: Severe
I either take Adderall or I sleep for 16-20 hours every day and need a nap aft r doing very light activity for just a couple of hours.
In context ↗ - Now: Somewhat better
gives me about ~8hrs (at most) of functional time so I’m able to hold down a job. Without it I don’t know how I’d manage anything
In context ↗ - Began after: nothing they could name
I'm continuously searching for the root cause of my fatigue and I'm really hopeful that someday I'll figure it out
Read from 23 of their posts and comments; links to the 14 this page draws on
Summary
Plover 42717 developed CFS around 2008 and has been ill about 15 years. Without stimulants they sleep 16 to 20 hours a day; Adderall, taken for ADHD and CFS, gives about eight hours of function and lets them hold a job, though they still have episodes of sleeping three to four days straight and never feel rested. Salt tablets and an abdominal binder helped, Provigil combined with Adderall was the perfect combination, and Feldenkrais physical therapy gave amazing muscle pain relief. They have found no root cause.
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What they tried
What they credit
Also tried
Their words about each treatment
- provigil/nuvigil · Helped
Nuvigil (it was provigil back when I used it) combined with adderall was the perfect combination for me.
In context ↗ - Adderall · Helped a lot
I take 15 mg IR twice a day and it works wonders for me.
In context ↗ - salt tablets, abdominal binder, compression stockings · Helped
I bought salt tablets which seemed to work best ... I bought an abdominal binder that seems to help a lot.
In context ↗ - Feldenkrais method · Helped a lot
I worked with a physical therapist who practiced the feldenkrais method and had amazing results with my muscle pain
In context ↗ - breathing trick: in for 4 seconds, hold for 2, out for 6 · Helped
It's saved me multiple times from fainting and helps keep me from getting to the point that I feel like I'll faint.
In context ↗ - nicotine · Worse
The few times I've tried nicotine it has seemed to make my lightheadedness even worse
In context ↗ - caffeine · Worse
same goes for caffeine so I stay away from both of those
In context ↗ - lexapro · Not said
started taking lexapro a couple of years ago
In context ↗ - tramadol · No change
I've taken it a few times and for me I felt like it did nothing at all
In context ↗ - forcing myself to wake up early and stay awake all day · No change
I've tried forcing myself to wake up early and stay awake all day but I still had insomnia.
In context ↗ - resting as much as possible on off-weeks · No change
let myself sleep/nap as much as I want ... Yes, truthfully it did absolutely nothing.
In context ↗ - keto diet · Helped
I felt ever so slightly better, but not enough to make it worth the effort.
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. The chart starts 9.7 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2008 | CFS began; ADHD previously managed without medsI've had ADHD my whole life but was able to manage without meds for most of it but then I developed CFS so I started taking it for duel purposes.In context ↗ | Not stated | |
| 2018-03-25 | Lowest baseline: sleeps 16-20 hours a day without AdderallI either take Adderall or I sleep for 16-20 hours every day and need a nap aft r doing very light activity for just a couple of hours.In context ↗ | Severe | |
| 2020-04-21 | Adderall gives about eight hours of function; able to hold a jobI was diagnosed with adhd and take adderall, which also helps with the cfs and gives me about ~8hrs (at most) of functional time so I’m able to hold down a job.In context ↗ | Mild | Amphetamine salts (Adderall) |
| 2022-05-02 | Working a 7 on/7 off schedule, sleeping 12-14 hours a day on off weeks, never restedI currently work a 7 on/7 off schedule. ... I will at least try to limit my sleep to 12-14 hours/day.In context ↗ | Mild |
Adverse events
- Modafinil / armodafinil“after using it daily for about a week, there'd be one or 2 days where I'd have horrible fatigue even while taking the provigil” In context ↗ Made symptoms worse
- Nicotine patches“The few times I've tried nicotine it has seemed to make my lightheadedness even worse” In context ↗ Low blood pressure or fainting
- Salt, electrolytes and fluids“eating spoonfuls of salt with water made me nauseous” In context ↗ Gut side effects
- Salt, electrolytes and fluids“While this seemed to help, I constantly felt bloated which I didn't like.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
The best thing for my brain fog is adderall, which also helps with my fatigue.
In context ↗ - POTS & dysautonomia
I have orthostatic hypotension/POTS (which I think makes my CFS worse)
In context ↗ - Sleep problems
I do not get restful sleep. It’s like “sleep mode” on a computer.
In context ↗ - Pain & fibromyalgia
had amazing results with my muscle pain
In context ↗
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