Bedbound with ME/CFS, now recovered after low-dose naltrexone and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
i got diagnosed when i was 16 and im 19 now
In context ↗ - At worst: Severe
was bedbound around 90% of the time ... when i was at my most severe, i couldn’t even stay awake for more than 30 min
- Now: Recovered
i’m doing fantastic. off my feeding tube and no nausea or vomiting at all. i feel the same as before i got sick 🫶
In context ↗ - Began after: a vaccination
mine was triggered by the covid vaccine and then made worse by a stomach virus.
In context ↗
Read from 29 of their posts and comments; links to the 11 this page draws on
Summary
They fell ill at 16 after a COVID vaccine, worsened by a stomach virus, and were bedbound about 90% of the time, unable to stay awake for more than 30 minutes. Low-dose Abilify helped but caused 20 pounds of weight gain in 2 months; low-dose naltrexone (4.5 mg) plus strict pacing then took them from severe to mild over about a year. They later had duodenal derotation surgery and came off tube feeding.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped a lot
i had to give up pretty much everything to focus on pacing. combined with medication, im more on the moderate side of things now!
In context ↗ - therapist who specifically works with people with chronic illnesses · Helped
she has helped me so much with negative thoughts and also with giving advice on how to adjust my life
In context ↗ - low dose abilify · Helped
abilify also worked well, but it caused a ton of weight gain for no reason
In context ↗ - LDN · Helped a lot
LDN was an absolute lifesaver for me along with strict pacing. it took about a year but i’m mild now!
In context ↗ - tube feeds · Helped
i’ve been tube fed for almost a year now and i don’t regret it for a second
In context ↗ - Gabapentin · Not said
i take it and it hasn’t worsened any of my conditions
In context ↗ - duodenal derotation with anastomosis · Helped a lot
i’m doing fantastic. off my feeding tube and no nausea or vomiting at all. i feel the same as before i got sick
In context ↗
Approaches: CBT & mindset · Diet · Pacing · Surgery & structural
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 16, about 2021 | ME/CFS began after COVID vaccinemine was triggered by the covid vaccine and then made worse by a stomach virus.In context ↗ | Severe | |
| January 2024 | LDN plus pacing; improved from severe to mild-moderatei can confidently say it brought me from severe to mild-moderate!In context ↗ | Moderate | Low-dose naltrexone |
| July 2024 | mild, can do most daily activities and short outingsi was never this severe, but was bedbound around 90% of the time. LDN was an absolute lifesaver for me along with strict pacing. it took about a year but i’m mild now!In context ↗ | Mild | Low-dose naltrexone |
| November 2025 | after duodenal derotation surgery, off feeding tube, no nausea or vomitingi had a duodenal derotation with anastomosis. similar to the alvear procedure! i’m doing fantastic. off my feeding tube and no nausea or vomiting at all. i feel the same as before i got sickIn context ↗ | Recovered |
Adverse events
- Low-dose Abilify / aripiprazole“i gained 20 pounds in 2 months with no dietary changes. literally just the med.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if i do have PEM it lasts only a day or two and is very mild
In context ↗ - Sleep problems
i’ve suffered from my insomnia my entire life
In context ↗ - Gut problems
off my feeding tube and no nausea or vomiting at all
In context ↗
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