Could not drive with ME/CFS, now nearly back to normal on midodrine and caffeine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
I had chronic fatigue, but didn’t know it, thought I was just the tired type.
In context ↗ - At worst: Moderate
I had maybe 4 hours of energy a day to get life done at best, and had to take many naps and rest throughout the day.
In context ↗ - Now: Near normal
With meds, I’m pretty much back to healthy. I wake up at 6 am every day and don’t even think about taking a nap or resting until I go to bed at 10:30.
In context ↗ - Began after: nothing they could name
I had chronic fatigue, but didn’t know it, thought I was just the tired type.
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Chronic fatigue went unrecognised for years and worsened after her first three children; a varicose-vein surgery did not help. By her fifth child she could not drive, had about four hours of energy a day and needed many naps. After about a year of investigation she was diagnosed with severe POTS and began midodrine 10 mg four times daily plus caffeine pills. She later called herself pretty much back to healthy; an earlier post said she sometimes needed one nap a day.
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What they tried
Also tried
Their words about each treatment
- Midodrine · Helped a lot
got put on Midodrine 10 mg 4x a day, and starting supplementing with caffeine pills as needed
In context ↗ - caffeine pills · Helped
starting supplementing with caffeine pills as needed, and I can finally be a pretty energetic, hands on parent
In context ↗ - surgery to remove varicose veins · No change
I had a surgery to remove them. That didn’t help
In context ↗ - plaquenil · Helped
I’m on midodrine and plaquenil. I use to be so dead inside with fatigue. ... With meds, I’m pretty much back to healthy.
In context ↗
Approaches: POTS medication · Other drugs and medicines
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 | After |
|---|---|---|---|
| — | chronic fatigue noticed, thought she was just the tired typeI had chronic fatigue, but didn’t know it, thought I was just the tired type.In context ↗ | Mild | |
| By the time number 5 came | could no longer drive, about four hours of energy a day, many napsI had maybe 4 hours of energy a day to get life done at best, and had to take many naps and rest throughout the day.In context ↗ | Moderate | |
| the last 5 years | energetic, hands-on parent after midodrine and caffeine pillsgot put on Midodrine 10 mg 4x a day, and starting supplementing with caffeine pills as needed, and I can finally be a pretty energetic, hands on parent.In context ↗ | Near normal | Midodrine |
| 2024-11-30 | up at 6am, no nap until 10:30pm, sometimes one nap a dayWith meds, I’m pretty much back to healthy.In context ↗ | Near normal | Midodrine |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I’m medicated for pots syndrome now
In context ↗ - Brain fog
I had massive brain fog
In context ↗ - Anxiety & low mood
exhausted beyond belief, depressed, and did I mention brain fog?
In context ↗
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