ME/CFS
Severe → somewhat betterIll 5.5 years before improving or writingNeeds ongoing treatment
Housebound with ME/CFS, now somewhat better with pacing and low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
We didn't know that it really was ME/CFS yet and pacing wasn't something I was knowingly aware of.
In context ↗ - At worst: Severe
4 years ago PEM meant that I needed to stay in my bed, in a darkened room.
In context ↗ - Now: Somewhat better
In comparison better that at the beginning. Don't know if I would count it as much better. I still can't work and I still can't leave my apartment really
In context ↗ - Says they never had: Anxiety & low mood
not because I was depressed or anything but simply for chronicly ill People to deal with their situation
Read from 50 of their posts and comments; links to the 25 this page draws on
Summary
Bluebell 99770 fell ill in November 2020; a five-minute workout put them in bed for a week, and they became housebound with PEM, brain fog, headaches and breathlessness. Pacing raised their baseline and low-dose naltrexone eased brain fog enough to drive 20 minutes in 2023. Cortisone injections for a herniated disc helped for only two weeks in 2025, and an October 2025 COVID infection set them back. They remain largely housebound.
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What they tried
What they credit
Also tried
ACT therapy· Helpedinflatable soft cervical Collar / inflatable neckbrace· Helpedfoam roller· HelpedBathsalts· Helpedrockstar energy drinks· HelpedMicrosilver creme· HelpedCortison injections· Helped · wore offAcupuncture· No changeCortison tabletts· No changesleep schedule· Worseslow walking / 3000 steps· Worseqi-gong and Yoga· Worseinhaler· WorsePhisio· Not saidManual Therapie· Not saidStopped drinking sugar in drinks· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- sleep schedule · Worse
At the beginning the doctors told me to get an sleep schedule. Got worse while maintaining it.
In context ↗ - slow walking / 3000 steps · Worse
Tried slow walking for a kilometer. First day was around 40 minutes. Second day was an hour. Third day I couldn't get out of my apartment.
In context ↗ - qi-gong and Yoga · Worse
Tried low stuff like qi-gong and Yoga. Even that send me into PEM.
In context ↗ - inhaler · Worse
they gave me an inhaler that fucked it more for me. I couldn't breath for a day nearly panicked.
In context ↗ - Pacing · Helped a lot
I worked hard with pacing to get my baseline to what it is today. "Far" better than it was 4 years ago.
In context ↗ - ACT therapy · Helped
ACT therapy helped me alot to aknowledge that my body doesn't do the stuff that he was able to before this illness.
In context ↗ - LDN · Helped
I was able to drive my car for 20 minutes last week after 3 Years not being able to. That is a big thing for me. And PEM feels less for some reason.
In context ↗ - inflatable soft cervical Collar / inflatable neckbrace · Helped
Had Symptoms lighten when I stretched my neck with a inflatable neckbrace.
In context ↗ - Phisio · Not said
I already tried Phisio, Acupuncture, Manual Therapie.
In context ↗ - Acupuncture · No change
Had it for a couple weeks. Didn't really do anything for me
In context ↗ - foam roller · Helped
as I am stretching my spine, the symptoms lower. So either that is something in my head, or it helps.
In context ↗ - Bathsalts · Helped
I can't really bath that much, but it helps with my back-pain when I am able to.
In context ↗ - rockstar energy drinks · Helped
I drank rockstar energy drinks. Helped a bit but the headaches where still there.
In context ↗ - Microsilver creme · Helped
I use a Microsilver creme. Don't know why but that one worked the best by now.
In context ↗ - Stopped drinking sugar in drinks · Not said
Stopped drinking sugar in drinks and got down to 122 and am now 124.
In context ↗ - Cortison tabletts · No change
Tried Cortison tabletts but those didn't really help much.
In context ↗ - Cortison injections · Helped
Now we upped to Cortison injections. Those help for 2 weeks. I was able to read a Book for the first time in 5 years.
In context ↗ - COVID vaccination as treatment · Not said
The Covid vax made my shoulder hurt a bit after. But I always react harder on the covid-vax.
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| November 2020 | became ill; a five-minute workout put them in bed for a weekThen suddenly I couldn't do 5 minute workouts and even after those I would have to be in my bed for a week without really knowing why.In context ↗ | Severe | |
| two years into being sick | crashed after a 7-hour tattoo sessionI got mine two years into being sick. ... For me it is mostly the week after the tattoo that is worse, as it feels like muscle soreness.In context ↗ | Severe | |
| February 2023 | neck stretching with an inflatable collar lightened symptomsHad Symptoms lighten when I stretched my neck with a inflatable neckbrace.In context ↗ | Moderate | |
| June 2023 | low-dose naltrexone eased brain fog; drove 20 minutes after 3 yearsI was able to drive my car for 20 minutes last week after 3 Years not being able to.In context ↗ | Moderate | Low-dose naltrexone |
| April 2025 | cortisone injections for a herniated disc; read a book and went grocery shoppingThose help for 2 weeks. I was able to read a Book for the first time in 5 years. And I was able to go grocery shopping for the first time in 2 years.In context ↗ | Moderate | Corticosteroid pulses |
| April 2025 | cortisone injection benefit stopped after two weeksSadly it only helped for 2 weeks and stopped.In context ↗ | Moderate | |
| October 2025 | COVID infection with ongoing problemsThat was mid of October, I still have problems from that infection.In context ↗ | Moderate | |
| June 2026 | attending concerts again, up to two a yearI was at Linkin Park beginning of the month and it was magical.In context ↗ | Moderate |
Adverse events
- Qigong, tai chi and isometric yoga“Tried low stuff like qi-gong and Yoga. Even that send me into PEM.” In context ↗ Made symptoms worse
- Everyday exercise and activity“Tried slow walking for a kilometer. First day was around 40 minutes. Second day was an hour. Third day I couldn't get out of my apartment.” In context ↗ Made symptoms worse
- “Like Blood-pressure meds that should have lowered my blood pressure hightend it.” In context ↗ Side effects
- “they gave me an inhaler that fucked it more for me. I couldn't breath for a day nearly panicked.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I had problems with taking it in the evening. Since then I take it at 9am.” In context ↗ Side effects
- “Just my heart raced then because of the energy drinks.” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“The Covid vax made my shoulder hurt a bit after. But I always react harder on the covid-vax.” In context ↗ Side effects
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
PEM feels less for some reason. I still get it but it seems less.
In context ↗ - Brain fog
Not healed or anything, but it manages the Brain-Fog.
In context ↗ - Pain & fibromyalgia
it helps with my back-pain when I am able to
In context ↗ - Headaches & migraine
They don't leave fully but they get bearable for me.
In context ↗ - Light & noise sensitivity
I just get overwhelmed when to many people or soundsources are together.
In context ↗ - Sleep problems
Got times where I sleep at day. Other days I sleep at night.
In context ↗ - Muscle weakness
4 years ago I had a weekness while PEM where I felt like I couldn't move my arms or legs.
In context ↗ - Breathlessness
That my chest can't expant fully and that is why I don't get enough air.
In context ↗ - Gut problems
my stomach produces to much acid when I don't eat enough or the right stuff so that my stomach starts eating itself with the accid and that hurts
In context ↗
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