ME/CFS
Moderate → no benefitIll for 7.5 yearsNeeds ongoing treatment
ME/CFS brain fog and hives, in bed by 2024; stimulants gave no benefit
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 7.5 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
my current doctor, who diagnosed me with CFS
In context ↗ - At worst: Moderate
honestly just a little bit of stretching (the kind i used to do to maintain flexibility as a dancer before i got sick, but not as many or for as long) is all i can handle.
In context ↗ - Now: No benefit
If it's helped with my fatigue, it's been such a slight change that I can't really tell for sure if it has or not.
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Acorn 70506 developed ME/CFS by 2018, with brain fog and recurring hives that doctors said were not allergic. Stimulants (methylphenidate and Vyvanse) gave no benefit for the brain fog, and by 2024 they were using rinseless bodywash in bed. Aggressive vitamin D supplements have kept low levels in the healthy range for a couple of years, but any effect on fatigue was too slight to tell.
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What they tried
Also tried
Their words about each treatment
- methylphenidate · No change
i've tried a couple different stimulants (methylphenidate and vyvanse) ... i never did feel any benefit from them
In context ↗ - vyvanse · No change
i never did feel any benefit from them ... i got up to a pretty hefty dose on the vyvanse
In context ↗ - effexor/venlafaxine · Worse
involuntary muscle twitching is a known side effect ... i have this, though it isn't restricted to just my legs
In context ↗ - zyrtec · Helped
i take zyrtec daily to help keep them at bay
In context ↗ - prescription steroids · Helped
sometimes they get really bad and only prescription steroids can make them go away
In context ↗ - stretching · Not said
just a little bit of stretching ... is all i can handle
In context ↗ - vitamin D supplements · Not said
aggressive use of supplements has finally gotten me to stay in the healthy range ... If it's helped with my fatigue, it's been such a slight change that I can't really tell
In context ↗
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. 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 |
|---|---|---|
| onset | developed ME/CFS symptoms, with hives starting around the same timei have had issues with reccurring outbreaks of hives since around the time i developed symptoms of CFSIn context ↗ | Not stated |
| 2018-05-13 | could only manage a little stretching, far less than as a dancerhonestly just a little bit of stretching (the kind i used to do to maintain flexibility as a dancer before i got sick, but not as many or for as long) is all i can handle.In context ↗ | Moderate |
| 2024-02-29 | washing in bed with rinseless bodywashYou can use it with a washcloth in bed, no water required.In context ↗ | Moderate |
Adverse events
- Venlafaxine (Effexor)“involuntary muscle twitching is a known side effect; one that can stay with you forever even if you stop taking the medication. i have this” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
my brain fog and limited concentration and reading comprehension
In context ↗ - Mast cell (MCAS) & allergies
i have had issues with reccurring outbreaks of hives since around the time i developed symptoms of CFS
In context ↗