ME/CFS at 20% function and worsening, tried D-ribose and greens powders
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 27 years
- Last post
- Oct 2022
In their words
- At worst: Severe
I'm getting quite concerned that I'll not get back to my baseline (30%) or get even worse than now (about 20%).
In context ↗ - Now: No benefit
I relapsed to a very low point and haven't recovered and am continuing downward further
In context ↗
Read from 9 of their posts and comments; links to the 7 this page draws on
Summary
The user had CFS for 27 years at a baseline of about 30% of normal function, with crashes of up to three months after exertion or infection. From September 2020 they declined for no identified reason to about 20% and were still worsening by January 2022. D-ribose and greens powders helped somewhat, while modafinil caused side effects and stimulants led to crashes.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- yoga · Much worse
something that caused a big crash ( like trying yoga once)
In context ↗ - therapy · Helped
after years of therapy I finally came to terms with this illness
In context ↗ - antidepressants · Helped
I know I definitely would not have made it without antidepressants and benzo's.
In context ↗ - not being on your phone before bed · No change
I've tried both ways and both are the same for me
In context ↗ - weed · Worse
Never could smoke the darn stuff, makes me paranoid as hell
In context ↗ - D-Ribose powder · Helped
I tried and like D-Ribose powder, maje sure its pure, from a good company.
In context ↗ - greens powders with added vitamins · Helped
I also find greens powders with added vitamins help some.
In context ↗ - modafinal · Worse
My Dr gave me modafinal but i didn't like the side effects either.
In context ↗ - Stimulants (unspecified) · Worse
Stimulants will give you temporary energy but i find always results in a crash after.
In context ↗
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 25.7 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 |
|---|---|---|
| age 27 | developed CFSI was 27 when I developed CFSIn context ↗ | Not stated |
| September 2020 | began declining for no identifiable reasonLast September 2020, I started getting worse overall and have continued downward progressively since.In context ↗ | Severe |
| 2022-01-09 | down to about 20% from a 30% baseline, still worseningI'll not get back to my baseline (30%) or get even worse than now (about 20%)In context ↗ | Severe |
Adverse events
- Modafinil / armodafinil“My Dr gave me modafinal but i didn't like the side effects either.” In context ↗ Side effects
- Stimulants (unspecified)“Stimulants will give you temporary energy but i find always results in a crash after.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
only after doing something that caused a big crash ( like trying yoga once)
In context ↗ - Sleep problems
I'm going to try again in hopes I can improve my sleep/energy
In context ↗ - Pain & fibromyalgia
I'd like to try it for sleep, pain and anxiety
In context ↗ - Anxiety & low mood
severe depression and attempts ... my depressionis under control
In context ↗