Bedridden with ME/CFS, now somewhat better after supplements
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- since elementary school
- Last post
- May 2025
In their words
- At worst: Severe
I was already bedridden
In context ↗ - Now: Somewhat better
These helped me get out of bed and do some light work, but I'm gaining tolerance to my pain meds now, so my state is regressing.
In context ↗ - Began after: nothing they could name
first, as elementary school started, I slowly noticed I couldn't yell like the other kids, and my voice got progressively weak as the years went by
In context ↗
Read from 11 of their posts and comments; links to the 10 this page draws on
Summary
Prairie 84215 traces ME/CFS symptoms to elementary school, with voice weakness and sore throat, worsened by mono in 2019. By 2020 they could manage only 10 steps to the bathroom and back, later describing a move from moderate to bedridden. Concerta eased fatigue, PEM and brain fog but tolerance forced stopping; a wallet-draining supplement regimen helped them get out of bed and do light work, though by May 2025 pain-medication tolerance was causing regression.
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What they tried
What they credit
Also tried
Their words about each treatment
- Amitriptyline · No change
I had Amitriptyline prescribed when the doctors still thought I only had Fibromyalgia ... Didn't work for me
In context ↗ - concerta · Helped a lot
after becoming ill with ME, I started taking concerta again, and found it it alleviated a lot of the fatigue, and got me able to do things I hadn't been able to do for years
In context ↗ - SSRIs · No change
I've had no luck with SSRIs, but if it can help someone, then PLEASE.
In context ↗ - Creatine Monohydrate · Helped
I've actually had some degree luck with supplements that aid the mitochondria and ATP production! ... am currently taking Creatine Monohydrate
In context ↗ - D-Ribose · Helped
I did notice early on that D-Ribose made those specific symptoms of mine a bit worse, whilst giving me a bit more energy; I did see that as a worthy trade-off for me
In context ↗ - methylated B-Complex · Helped
I also felt worse from the B-Complex ... but it wore off after a week or two and it's done pretty pleasant things for me & my memory!
In context ↗ - L-Carnitine / Acetyl Carnitine · Helped
I'm on L-Carnitine and—unfortunately for me—results have honestly been minimal, but there is a noticeable difference
In context ↗ - Magnesium Malate / Magnesium Glycinate · Helped
Acetyl Carnitine, Magnesium Malate, and Ubiquinol ... PEA, Magnesium Glycinate, methylated B-Complex
- Ubiquinol · Helped
Ubiquinol, NAC, MCT oil, D-Ribose ... These helped me get out of bed and do some light work
In context ↗ - PEA · Helped
PEA, Magnesium Glycinate, methylated B-Complex, L-carnitine & Creatine Monohydrate. These helped me get out of bed and do some light work
In context ↗ - MCT oil · Helped
I've had some luck with MCT oil when it comes to my voice, though! :) Relieves some of the weakness I experience.
In context ↗
Approaches: Amino acids and carnitine · Stimulants · 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. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| elementary school | first symptoms: voice weakness and sore throatfirst, as elementary school started, I slowly noticed I couldn't yell like the other kids, and my voice got progressively weak as the years went byIn context ↗ | Not stated | |
| 2019 | mono worsened voice and throat symptomsuntil I got mono in 2019 and it was basically over for it from that point onwardIn context ↗ | Not stated | |
| 2020-08-17 | bedridden, only 10 steps to bathroom and backTaking 10 steps to the bathroom and 10 back to bed :)In context ↗ | Severe | |
| 2024-10-31 | Concerta alleviated fatigue, PEM and brain fog and got them out of bedit alleviated a lot of the fatigue, and got me able to do things I hadn't been able to do for yearsIn context ↗ | Moderate | Methylphenidate (Ritalin, Concerta) |
| 2024-10-31 | tolerance to Concerta, stoppedAgain had to stop it due to tolerance build-upIn context ↗ | Severe | |
| 2025-04-13 | horrible flare after binge gamingI binged Cyberpunk 2077 for a month straight and it put me in a horrible flareIn context ↗ | Not stated | |
| 2025-05-12 | supplement regimen helped get out of bed and do light workThese helped me get out of bed and do some light workIn context ↗ | Moderate | |
| 2025-05-12 | state regressing as tolerance to pain meds grewI'm gaining tolerance to my pain meds now, so my state is regressingIn context ↗ | Moderate |
Adverse events
- Creatine“Creatine can be a lil rough on your stomach, though! It passed for me, but that first couple days was not very nice” In context ↗ Gut side effects
- D-ribose“I did notice early on that D-Ribose made those specific symptoms of mine a bit worse” In context ↗ Made symptoms worse
- Vitamin B complex“I also felt worse from the B-Complex ... but it wore off after a week or two” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Mine also gets worse after exertion
In context ↗ - Brain fog
my IQ dropped about 20 points by the time I went from moderate to bedridden
In context ↗ - POTS & dysautonomia
dizziness, anxiety, and blood pressure issues I get when shifting positions & stretching
In context ↗ - Pain & fibromyalgia
dull, aching pain and soreness abound
In context ↗ - Muscle weakness
that same muscle weakness many of us have in our bodies
In context ↗ - Flu-like symptoms
that "feeling sick" feeling I have
In context ↗
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