Bedbound with ME/CFS over a year, improved then relapsed after a trip; NAC helped a little
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 22 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
After 20 years of this, I started NAC for the first time
In context ↗ - At worst: Severe
I was mostly bedbound for more than a year after that.
In context ↗ - Now: Relapsed
I haven't been back to the level I was before the trip
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
Tern 20209 fell ill in high school and, after forcing themself to finish, crashed and was mostly bedbound for over a year before slowly improving to part-time gardening work over a decade. A hiking trip to New Zealand four years before writing left them near bedbound for three weeks, and they never regained their earlier level after the trip, with insomnia worse. NAC and blackseed oil helped a little; a psychiatrist talk lifted a weight off them.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- total rest · Helped
it's required at least a year of total rest before pushing myself a bit to start improving each time
In context ↗ - pushing myself to go on hikes · Much worse
when I got home I was pretty close to bed bound for 3 weeks then slowly improved. I haven't been back to the level I was before the trip
In context ↗ - sunshine / sunlight · Helped
I know getting sunshine for me during the day helps with sleep patterns
In context ↗ - moderate exercise · Helped
Moderate exercise helps stabilise things.
In context ↗ - protein shake meal substitute · Helped
Something that has helped me is to substitute a meal with a protein shake
In context ↗ - psychiatrist / talking therapy · Helped
recently I told a doctor I was depressed so he referred me to a psychiatrist. After an hour and a half talking about my situation I felt like I had such a huge weight lifted of me.
In context ↗ - blackseed oil · Helped
The only other thing I've tried that seemed to help a bit is blackseed oil
In context ↗ - NAC · Helped
I started NAC for the first time a couple months ago and it actually feels like it has helped a bit
In context ↗ - wim hof breathing · Helped
I have tried the wim hof breathing and cold showers (not freezing baths) they have helped when I could do it
In context ↗
Approaches: Radical rest
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 |
|---|---|---|---|
| high school, about 2003 | became ill during the last years of school and kept forcing themselves through itI missed my own high school graduation because I had become severe after forcing myself to finish the last 2.5 years from onsetIn context ↗ | Mild | |
| after finishing school, about 2005 | crashed hard once school finished and was mostly bedboundwhen school finished I crashed hard, spent close to 18 months house bound before slowly improvingIn context ↗ | Severe | |
| a few years later, late 2000s | slowly improved to part-time garden work, holidays and sportthe first 3 years I was moderate/severe then I slowly worked my way up to part time work for over 10 yearsIn context ↗ | Mild | Radical rest |
| about 2019 | crashed after a two-week hiking trip to New Zealand, close to bedbound for three weekswhen I got home I was pretty close to bed bound for 3 weeks then slowly improved. I haven't been back to the level I was before the tripIn context ↗ | Severe | |
| 2023 to May 2025 | never returned to their earlier level, stopped working, insomnia worseI haven't been back to the level I was before the trip but I think all the covid stuff had an influence on that since I stopped workingIn context ↗ | Moderate |
Adverse events
- “the guard I have to wear to protect my teeth makes getting to sleep harder too” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when I got home I was pretty close to bed bound for 3 weeks then slowly improved
In context ↗ - Sleep problems
insomnia became worse too
In context ↗ - Anxiety & low mood
I say this as being on the other side of a 3 year deep depression
In context ↗ - Muscle weakness
I have also experienced weak breathing/core muscles at times when my symptoms worsened
In context ↗ - Temperature regulation
my symptoms worsened usually from stress or also hot weather
In context ↗
Ask Miruvor AI
Similar stories
-
Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing
A California woman infected with COVID in March 2020 was sick six months, partly recovered, then relapsed and was almost bedridden by early 2023, unable to drive and sensitive to light and noise. An out-of-pocket ME/CFS specialist regimen of LDN, Abilify,…
-
Unable to walk with long COVID, much better on immunosuppressants and anti-inflammatories
After a third COVID infection they had significant shortness of breath, dizziness, exercise intolerance, tachycardia and hypertension, then became unable to walk and extremely sick for months after hiking and a COVID/flu vaccine. Six months of searching…
-
Bedbound with ME/CFS, now housebound and somewhat better with rest and low-dose naltrexone
After about 1.5 years of ME/CFS with push–crash cycles, they became bedbound for two months in mid-2026, getting up only for the bathroom. They improved slowly with four months of rest, low-dose naltrexone, a beta-blocker, compression and salt/fluids. By…
-
Bedbound with ME/CFS for over a year, now partly better with pacing and LDN
A Dutch long-hauler became ill with COVID in mid-2022 and was bedbound, in bed around the clock, for over a year. Rest and pacing, a 75% vegetable diet that fixed their gut, NAC for brain fog, LDN for PEM and ivabradine for POTS brought slow, partial gains.…