ME/CFS worsening in mid-20s until unable to work, somewhat better with rest and D-Ribose
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 31 years
- Last post
- Nov 2015
In their words
- Condition: ME/CFS
supportive in terms of my CFS
In context ↗ - At worst: Moderate
I managed to hold down a full time job for 15 years before I simply couldn't cope. ... I no longer work so I just chill at home
In context ↗ - Now: Somewhat better
my symptoms eased somewhat over time with the additional rest
In context ↗ - Began after: nothing they could name
I believe that the symptoms started showing at around 8 or 9 y.o.
- Says they never had: Gut problems
I don't have pain or digestive issues
- Says they never had: Pain & fibromyalgia
I don't have pain or digestive issues
Read from 10 of their posts and comments; links to the 5 this page draws on
Summary
Comet 29701 dates their CFS to around age 8, mild for years before worsening in their mid-20s; they held a full-time job for 15 years before they could no longer cope and stopped work about 2010. Extra rest then eased their symptoms somewhat, they built up daily exercise with a trainer, and in late 2015 D-Ribose greatly reduced their brain fog within three weeks. Brain fog was their biggest problem, and exercise could still wipe them out some days.
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What they tried
What they credit
Also tried
Their words about each treatment
- CFS clinic · No change
I went to one when I was finally diagnosed and the advice that they offered at the time was basically all things that I was doing already
In context ↗ - exercise · Helped
In the last year have been able to start, and build up, exercise (which helps **but is not a cure**)
In context ↗ - coffee · Worse
I use coffee as a way to give me a mental boost for a short period of time but I know that I will pay for it afterwards
In context ↗ - additional rest · Helped
my symptoms eased somewhat over time with the additional rest
In context ↗ - D-Ribose · Helped a lot
have just started using D-Ribose which has made a big impact on my brain fog already
In context ↗
Approaches: Pacing · Physiotherapy and rehab
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 8 or 9 | symptoms began in childhood at a mild levelI believe that the symptoms started showing at around 8 or 9 y.o. - stayed at a mild level from then till mid 20s when they started worseningIn context ↗ | Mild | |
| mid 20s | symptoms started worseningstayed at a mild level from then till mid 20s when they started worseningIn context ↗ | Mild | |
| about 2010 | could no longer cope with full-time work and gave up workI managed to hold down a full time job for 15 years before I simply couldn't copeIn context ↗ | Moderate | |
| after giving up work | symptoms eased with additional rest once he stopped workingmy symptoms eased somewhat over time with the additional restIn context ↗ | Mild | Pacing and the energy envelope |
| 2015 | built up daily exercise with a personal trainer, then group interval training; strength and recovery improvedAfter nine months of daily sessions to improve strength and stamina, I'd improved to the point of joining in on a group interval training sessionIn context ↗ | Mild | Graded rehab and self-made programmes |
| November 2015 | D-Ribose greatly reduced brain fog within three weekshave just started using D-Ribose which has made a big impact on my brain fog alreadyIn context ↗ | Mild |
Adverse events
- Caffeine and coffee“I use coffee as a way to give me a mental boost for a short period of time but I know that I will pay for it afterwards” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
Mental exhaustion/brain fog is probably the biggest problem for me
In context ↗
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