Lying in bed much of the day with ME/CFS, normal for a month on d-ribose, then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2015
In their words
- Condition: ME/CFS
3 years ago developed ME/CFS symptoms and was officially diagnosed.
In context ↗ - At worst: Severe
I'm usually lying in bed
In context ↗ - Now: Relapsed
now that I'm on the new supplier's I'm basically back to where I was before I started taking it
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Three years after their ME/CFS symptoms began, a person with long-standing lupus started d-ribose and felt back to normal for about a month, sleeping regular hours, staying awake all day and sitting at a desk. After switching to a cheaper bulk supplier the benefit vanished and they were again lying in bed much of the day. They blamed stress, a bad batch or ATP feedback and planned to retry the first supplier.
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What they tried
What they credit
Also tried
Their words about each treatment
- d-ribose · Helped a lot
I started taking d-ribose about a month ago since then I'd felt like I was back to normal.
In context ↗ - provigil · Not said
At this point I'm going back to mega-dosing provigil and caffiene, which I'd hoped to not have to do because of the cost (>1g/day).
In context ↗
Approaches: Supplements
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 first step with a time is 2.9 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|
| 3 years before posting | developed ME/CFS symptoms and was diagnosed3 years ago developed ME/CFS symptoms and was officially diagnosed.In context ↗ | Not stated |
| before starting d-ribose | usually lying in bed, too little energy to socialize or sit at a deskI'm usually lying in bedIn context ↗ | Severe |
| about a month before the post (2015-09) | felt back to normal on d-ribose: regular sleep, awake a full day, could socialize and sit at a deskI started taking d-ribose about a month ago since then I'd felt like I was back to normal.In context ↗ | Near normal |
| 2015-10-17 | benefit lost after switching to a bulk d-ribose supplier; back to pre-d-ribose baseline of lying in bednow that I'm on the new supplier's I'm basically back to where I was before I started taking it.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Brain fog
no brain fog ... I'm basically back to where I was before I started taking it
In context ↗ - Sleep problems
I was sleeping nearly regular hours
In context ↗
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