Barely functioning for years with ME/CFS, now much better; Adderall helped energy and focus
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 years
- Last post
- Apr 2024
In their words
- Condition: ME/CFS
Now I need to establish care for the daily things such as ME/CFS and POTS/OT with a new PCP
In context ↗ - At worst: Severe
I was barely functioning. I slept 18 hours per day and was pretty much a narcoleptic zombie when I had to be awake.
In context ↗ - Now: Much better
I'm slower than most. I can't be active, but I do all the daily things I need to.
In context ↗ - Began after: glandular fever or EBV
I got mono when I was 17.
Read from 9 of their posts and comments; links to the 6 this page draws on
Summary
Shore 54971 has had ME/CFS since mono at age 17; for six to seven years she was barely functioning and slept about 18 hours a day. She improved slowly, and Adderall helped energy, focus and brain fog, though it became less effective. Stopping it for a pregnancy attempt left her sleeping until late afternoon and slipping into depression. By 2024, aged 35, she had three children, was back at school and optimistic, though unable to be active.
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What they tried
What they credit
Their words about each treatment
- antibiotics · Not said
he sent me off with antibiotics
In context ↗ - rest / pacing · Helped
Luckily for me, the rest has helped and I’m feeling maybe 50% better today.
In context ↗ - Adderall · Helped
It gives me energy that helps me focus. My mind becomes clearer. Brain fog is alleviated.
In context ↗ - walking and stretching · Not said
I don’t exercise besides walking and stretching.
In context ↗ - time · Helped
Eventually, though, things got better. Slowly, but surely.
In context ↗
Approaches: Pacing · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 17 | Mono/viral infection and onset of autoimmune disease and CFSWhen I was 17 I was very sick with some sort of virus. ... my onset of autoimmune and CFS happened that same year.In context ↗ | Severe | |
| ages 17-24 | Barely functioning, slept 18 hours a day for 6-7 yearsThen I had the worst time of my life for the next 6 to 7 years. I was barely functioning. I slept 18 hours per dayIn context ↗ | Severe | |
| 2022-02-01 | Improved over years to a moderate state; sleeping 10-14 hoursEventually, it got easier but I’ve always slept somewhere around 10-14 hrs/day since then.In context ↗ | Moderate | Time and spontaneous remission |
| 2022-02-01 | Housebound after working three days in a row; rest helpedafter working a whole 3 days in a row haha, I was housebound and in my bed or couch the whole time. ... I’m feeling maybe 50% better today.In context ↗ | Moderate | |
| 2022-05-03 | Adderall improved energy, focus and brain fogwhile it helps me focus; the part I love most is that I feel somewhat normal. ... Brain fog is alleviated.In context ↗ | Mild | Amphetamine salts (Adderall) |
| 2022-11-20 | Stopped Adderall for pregnancy attempt; slept late and slipped into depressionI quit Adderall about 3 months ago. ... I slept until 4pm yesterday and 2:30pm today. ... I am slipping into depression.In context ↗ | Moderate | |
| 2024-04-16 | Aged 35 with three children, back at school, optimistic but unable to be activeI am 35 now. I have 3 kids. I'm going to school again. I'm optimistic. It's not perfect. I'm slower than most. I can't be active, but I do all the daily things I need to.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I tried to rest when PEM happened.
In context ↗ - Brain fog
Brain fog is alleviated.
In context ↗ - Sleep problems
I’ve always slept somewhere around 10-14 hrs/day since then.
In context ↗ - POTS & dysautonomia
ME/CFS and POTS/OT
In context ↗ - Anxiety & low mood
I am slipping into depression.
In context ↗ - Pain & fibromyalgia
Sometimes a glass of wine at night helps with pain, too.
In context ↗
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