Severe end of moderate ME/CFS with constant fatigue, much better on high-dose thiamine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 12 years
- Last post
- Feb 2024
In their words
- Condition: ME/CFS
I've had CFS since high school, I'm 27 now.
In context ↗ - At worst: Moderate
that made me progress from mild to the severe end of moderate
In context ↗ - Now: Much better
I've felt the same since getting a bit better and feeling good a lot of the time. Not healthy by any means
In context ↗ - Began after: another virus
staying at home after the initial infection until I felt really well again
Read from 11 of their posts and comments; links to the 6 this page draws on
Summary
Ill since high school and 27 in early 2022, they had gone from mild to the severe end of moderate CFS, with EDS, POTS and MCAS. After reading an article they began high-dose thiamine, 800 mg daily; over the following months their constant fatigue disappeared and brain fog, PEM and neck pain eased, though dizziness and a raised standing heart rate remained. By 2024 they felt good much of the time and were not in pain, but were not healthy by any means.
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What they tried
What they credit
Their words about each treatment
- thiamine · Helped a lot
it's been nearly 9 months and my fatigue is gone
In context ↗ - psychotherapy · Helped
my psychotherapist succeeded in convincing me
In context ↗
Approaches: CBT & mindset · Supplements
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 | After |
|---|---|---|---|
| high school | CFS began in high school; later went from mild to the severe end of moderateI've had CFS since high school, I'm 27 now.In context ↗ | Not stated | |
| — | at her worst, could cook once a day if her husband did the washing upWhen I was at my worst I could still do a bit of cooking once a day if I left the washing up to my husband.In context ↗ | Moderate | |
| 2021 | constant fatigue gone after high-dose thiamine; brain fog, PEM, dizziness and neck pain remainedit's been nearly 9 months and my fatigue is goneIn context ↗ | Mild | Thiamine / benfotiamine |
| 2024-02-06 | felt good much of the time and not in pain, but not healthy by any meansgetting a bit better and feeling good a lot of the timeIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM lessened and mainly brain fog now when I do too much for too long.
In context ↗ - Brain fog
Yes, brain fog is mostly gone but I still get it before and during my period.
In context ↗ - POTS & dysautonomia
I still have a higher heart rate upon standing but it doesn't bother me anymore.
In context ↗ - Pain & fibromyalgia
I still got pain in my neck sometimes but not so bad.
In context ↗
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