ME/CFS symptoms all their life, mostly in their room, somewhat better after career change
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- all my life
- Last post
- Apr 2022
In their words
- Condition: ME/CFS
So, I am suffering from cfs, or something along these lines
In context ↗ - At worst: Moderate
I can't really keep up with any social ties and I basically spend all my time in my room if I can help it.
In context ↗ - Now: Somewhat better
I think in the end my big issue was more a form of depression and dissatisfaction in life. I changed career paths and am doing pretty ok now
In context ↗ - Began after: nothing they could name
it feels like I've had this all my life
In context ↗
Read from 15 of their posts and comments; links to the 11 this page draws on
Summary
Vale 17268 had CFS symptoms all their life, spending most of their time in their room and too exhausted for social contact, exercise or video games. A four-month stretch of normal life in 2013 was later credited to a Chinese herbal prescription; acupuncture gave only a brief burst of energy and sublingual B12 briefly cleared their brain fog. By 2015 they had better days, and in 2022 they said a career change had them doing pretty ok.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- ritalin · Helped
That actually helped for a while, but I think it was just the effect of very strong caffeine in the end and it helped less and less.
In context ↗ - Chinese herbal solution · Helped a lot
this Chinese herbal solution that about 2 years ago gave me my life back for 5 months
In context ↗ - acupuncture · Helped
I feel better and more energetic than I have for ages ... I've again normalized in my "tired" state
- B12 · Helped
I started off this week with 1mg of b12 sublingually every day and immediately noticed my brain fog clearing up and my body functioning better all around.
In context ↗ - meditation · Not said
I meditate 2 hours every day
In context ↗ - melatonin · Helped
I've been experimenting with melatonin lately with rather mixed results ... Generally there seems to be an upwards trend
In context ↗
Approaches: Alternative therapies
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 |
|---|---|---|---|
| onset | CFS symptoms present all their lifeit feels like I've had this all my lifeIn context ↗ | Not stated | |
| 2013 | four months of normal life, social, studying, working and exercisingI could be social, outgoing, energeticIn context ↗ | Recovered | Chinese herbal medicine (TCM formulas) |
| 2014 | remission ended; back to spending all their time in their room, too tired even for video gamesand then it went awayIn context ↗ | Moderate | |
| July 2014 | burst of energy and better mood after corrected acupuncture sessionI feel better and more energetic than I have for agesIn context ↗ | Moderate | |
| 2014-07-02 | acupuncture boost faded back to their usual tired stateI've again normalized in my "tired" stateIn context ↗ | Moderate | |
| August 2014 | brain fog cleared on sublingual B12 but still not feeling wellimmediately noticed my brain fog clearing up and my body functioning better all aroundIn context ↗ | Moderate | Vitamin B12 |
| 2015-04-14 | good days; five-hour hike followed by two days bedriddenI went for a 5 hour hike a few days back and I'll have you know I was only dead tired and bedridden for 2 daysIn context ↗ | Mild | Chinese herbal medicine (TCM formulas) |
| 2015-10 | improvements did not hold; still ill apart from a few monthsI've had this my entire life save for 3 brilliant months which I cannot explainIn context ↗ | Mild | |
| 2022-04-19 | changed career paths and doing pretty okI changed career paths and am doing pretty ok nowIn context ↗ | Mild |
Adverse events
- Acupuncture“nothing has changed, if anything it's gotten worse and I feel even more tired” In context ↗ Made symptoms worse
- Acupuncture“In the first week of acupuncture I noticed absolutely nothing. If anything, I felt worse.” In context ↗ Made symptoms worse
- Acupuncture“I couldn't sleep. I was so ridiculously full of energy.” In context ↗ Insomnia from treatment
- Methylphenidate (Ritalin, Concerta)“it helped less and less. I'm not taking those pills anymore, I think they just burn me out.” In context ↗ Side effects
- Melatonin“Couldn't sleep at all the first night with it, which never happens to me.” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
whenever I do I end up even more exhausted and "sleep" 12 hours that day and the next
In context ↗ - Sleep problems
which mostly involves tossing and turning around in bed
In context ↗ - Anxiety & low mood
my big issue was more a form of depression and dissatisfaction in life
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID: unable to work for months, now somewhat better after antihistamines and LDN
After covid in March 2024, they developed long covid with EBV reactivation, histamine intolerance, dizziness and sensory overload, and could not work for months. Antihistamines with a low-histamine diet helped mood and sleep; LDN helped, and acupuncture…
-
Mostly bedbound with ME/CFS, now much better with pacing and LDN
Oak 85668 developed ME/CFS after mononucleosis about two and a half years before May 2022, when they were 33, and became more severe and mostly housebound/bedbound after COVID in 2022 added long COVID and dysautonomia. Pacing with heart-rate monitoring and…
-
Not enough detail to draw a path
Long COVID nausea and insomnia, back to 80% of normal for months, then relapsed after IVF
A woman living in a tropical country fell ill with long COVID in July 2022, with relentless nausea, stomach pain, head pressure and insomnia, losing 10 kg. After about six months of TCM, acupuncture, cupping and antihistamines she had an 8-9 month remission…
-
Bedridden with severe ME/CFS, now housebound and somewhat better on valacyclovir
Dew 88453 became ill with long COVID in March 2020 and was bedridden by 2022, with severe ME/CFS, POTS, pain and flu-like symptoms. After 6.5 years she improved in 2026, crediting valacyclovir, low-dose Abilify, cromolyn and hydrocortisone alongside POTS…