ME/CFS
Severe → no benefitIll for 13 months
ME/CFS with brain fog, POTS and fatigue, still severe and bedbound after pacing and LDN
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 13 months
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have recently been diagnosed with CFS (after now a year of fatigue that leaves me unable to work, struggling to take care of myself, and some days bedbound)
In context ↗ - At worst: Severe
Hi, I am bed bound severe
In context ↗ - Now: No benefit
supplements (L-acetyl carnitine, coQ10, alpha lipoic acid, ginkgo Biloba) have improved my mental focus and duration of focus, but very limited if at all improvement in physical capabilities
In context ↗ - Began after: another virus
35, flu-like symptoms, suddenly unable to focus one eye, numb fingers, sudden brain fog and extreme fatigue.
Read from 76 of their posts and comments; links to the 40 this page draws on
- Sep 2019
- May 2022
- Feb 2021
- Oct 2019
- Oct 2019
- Dec 2019
- Jan 2020
- Apr 2020
- Mar 2020
- Feb 2020
- May 2020
- May 2020
- May 2020
- May 2020
- May 2020
- Jun 2020
- Mar 2021
- Jul 2020
- Sep 2020
- Aug 2020
- Sep 2020
- Sep 2020
- Feb 2021
- Apr 2026
- Aug 2026
- May 2020
- Jun 2020
- Jun 2020
- Aug 2020
- Jun 2020
- Sep 2020
- Mar 2020
- May 2020
- Nov 2020
- Sep 2019
- Jan 2020
- Jul 2020
- May 2020
- Mar 2021
- Sep 2019
Summary
Fell ill in 2018 aged 35 with flu-like symptoms, brain fog, POTS and fatigue, unable to work. Strict pacing from autumn 2019 cleared her head, and in spring 2020 she had brief good moments; supplements later improved mental focus, but she remained housebound and then bedbound. A three-week low-dose naltrexone trial in 2020 was followed by her worst, longest crash, though she did not think LDN alone caused it, leaving her bedbound four months later and still severe in 2022.
Ask Miruvor AI
What they tried
Also tried
pacing· Helped a lotEpley manoeuvre· Helped a lotfitbit· Helpedliquorice root tea· HelpedDaylio· Helpedsitting qi gong, lying down yoga, tai chi· Helpedamitriptyline· Helpedthermal underwear and skisocks (pressure for POTS)· Helpedmelatonin· HelpedNSAIDs· Helpedshower stool· HelpedWim Hof breathing, Buteyko and box breathing, vipassana meditation· HelpedLevocarnitine· Helpedalpha lipoic acid· HelpedcoQ10· HelpedGinkgo Biloba· Helpedself lymphatic massage· HelpedTENS· HelpedNAC· Helpedelimination diet for lactose and gluten· No changeelimination diet for lactose and gluten· No changeTemazepam· Worsethe pill· WorseGlycine· WorseLDN· Much worseB vitamins· Not saidin-bed micro-exercise· Not said
Their words about each treatment
- pacing · Helped a lot
thanks to this sub I am now giving pacing a serious try ... It has worked wonders for my mental clarity
In context ↗ - fitbit · Helped
I have a fitbit and the total minutes above 92 bpm seems to be a fairly good predictor of crashes
In context ↗ - liquorice root tea · Helped
do make tea from soaking liquorice root. Haven't noticed energy gains, but find it does help with digestion
In context ↗ - B vitamins · Not said
in my latest experiment with B vitamins I got a major crash
In context ↗ - Daylio · Helped
I am also using Daylio and find it very insightful
In context ↗ - sitting qi gong, lying down yoga, tai chi · Helped
I do some lying down yoga exercises or sitting qi gong for few minutes
In context ↗ - Temazepam · Worse
From Temazepam I got all the side effects and only one night of ok sleep.
In context ↗ - amitriptyline · Helped
Once a week amitriptyline low dose at least helps me to reset my sleeping schedule
In context ↗ - thermal underwear and skisocks (pressure for POTS) · Helped
for me it really helps to wear thermal underwear (long trousers) and skisocks under my jeans. Keeps me warm and also provides some pressure to help with POTS.
In context ↗ - melatonin · Helped
Am now experimenting with daily melatonine just before bedtime, fingers crossed.
In context ↗ - the pill · Worse
Have tried it before my ME/CFS diagnosis and felt like I was prolonging the bad part of the month
In context ↗ - LDN · Much worse
Started it last month ... still got into my worst (and longest) crash yet 3 weeks in
In context ↗ - Epley manoeuvre · Helped a lot
ONE Epley manoeuvre greatly reduced my symptoms and after repeating it in the next the vertigo is now completely gone.
In context ↗ - NSAIDs · Helped
In hindsight I think I might have prevented a crash of two by taking NSAIDs for back pain
In context ↗ - shower stool · Helped
For me that has been a game changer. From not being able to shower, I can now at least shower once a week without PEM.
In context ↗ - Wim Hof breathing, Buteyko and box breathing, vipassana meditation · Helped
I do one or two rounds of Win Hof breathing in the morning. It helps me wake up and therefore helps me to have a more normal sleep/wake cycle.
In context ↗ - in-bed micro-exercise · Not said
I think the more spread out during the day your movements are the better they are tolerated.
In context ↗ - Levocarnitine · Helped
I've just built up to 1 gram Levocarnitine.
In context ↗ - alpha lipoic acid · Helped
I was prescribed alpha lipoic acid with the Levocarnitine
In context ↗ - coQ10 · Helped
supplements (L-acetyl carnitine, coQ10, alpha lipoic acid, ginkgo Biloba) have improved my mental focus
In context ↗ - elimination diet for lactose and gluten · No change
Am currently doing an elimination diet for lactose and gluten (just to be sure), no effect so far unfortunately.
In context ↗ - Ginkgo Biloba · Helped
I have started to take Ginkgo Biloba to improve circulation and it seemed to have helped a bit
In context ↗ - self lymphatic massage · Helped
that's why I started to try it ... they are almost gone now (unexpected but very welcome)
In context ↗ - TENS · Helped
Preliminary good results (just started) with TENS as well.
In context ↗ - NAC · Helped
NAC + glycine do seem to calm the extreme wiredness a bit down.
In context ↗ - Glycine · Worse
No I no longer take Glycine as it does reliably give me pain unfortunately
In context ↗
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 |
|---|---|---|---|
| September 2018 | CFS onset after flu-like symptoms; unable to work, some days bedboundafter now a year of fatigue that leaves me unable to work, struggling to take care of myself, and some days bedboundIn context ↗ | Moderate | |
| October 2019 | strict pacing; clearer mind but became completely housebound, life organised around bed and couchIt has worked wonders for my mental clarity (less brain fog - more mental energy to read or have phone conversations), but to reach that I had to become completely houseboundIn context ↗ | Moderate | Pacing and the energy envelope |
| November to December 2019 | crashed from a common cold and was bed bound for two monthsafter a crash (due to a common cold) that left me bed bound for November and DecemberIn context ↗ | Severe | |
| March 2020 | stable; housebound with half the day in bed, one outing a week, first good moments in 1.5 years2020 has been stable ok for me. Housebound (with about half the day in bed) and about once a week an expedition out of the houseIn context ↗ | Moderate | Pacing and the energy envelope |
| May 2020 | bedridden and vertiginous after a low-dose naltrexone trial; worst and longest crashI was already bedridden from (what I think) a bad reaction to LDN.In context ↗ | Severe | |
| November 2020 | still bedbound but slowly able to sit up againAm currently bedbound, but can slowly do some sitting again.In context ↗ | Severe | Pacing and the energy envelope |
| February 2021 | bedbound since May 2020; supplements improved mental focus but not physical capacityBedbound since May last year, supplements (L-acetyl carnitine, coQ10, alpha lipoic acid, ginkgo Biloba) have improved my mental focus and duration of focus, but very limited if at all improvement in physical capabilities.In context ↗ | Severe | |
| May 2022 | bed bound severe, doing cross-stitch and crochet lying on her backI am bed bound severe and I do some cross-stitch and crochet lying downIn context ↗ | Severe |
Adverse events
- Temazepam (Restoril)“From Temazepam I got all the side effects and only one night of ok sleep.” In context ↗ Side effects
- Low-dose naltrexone“Stopped LDN yesterday as I was feeling worse from it. Might be related?” In context ↗ Made symptoms worse
- Low-dose naltrexone“Every time I upped the dose I had two nights of bad sleep, mild muscle twitching and a tooth ache.” In context ↗ Side effects
- Low-dose naltrexone“First I would take it in the morning directly from the start (as it would wake me up at night)” In context ↗ Insomnia from treatment
- Low-dose naltrexone“I tried for 3 weeks but side effects (and me not reacting quickly enough on them ) has left me in my longest crash to date (and am not out yet).” In context ↗ Made symptoms worse
- Low-dose naltrexone“some new neurological symptoms started during my LDN trial and are not completely gone yet” In context ↗ Side effects
- Low-dose naltrexone“I've tried LDN in March but promptly went in to deepest crash yet that still leaves me bedbound 4 months later.” In context ↗ Made symptoms worse
- Amitriptyline (Elavil)“I will feel groggy the whole next day or so.” In context ↗ Side effects
- L-carnitine“So far no negative effects except being extra wired at night at the very beginning.” In context ↗ Insomnia from treatment
- L-carnitine“I did have problems sleeping when I just started and was slightly nauseated.” In context ↗ Gut side effects
- Glycine“No I no longer take Glycine as it does reliably give me pain unfortunately” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
have PEM the next day/rest of the week
In context ↗ - Brain fog
less brain fog - more mental energy to read or have phone conversations
In context ↗ - POTS & dysautonomia
I still have medium to severe fatigue, swollen lymph nodes and POTS
In context ↗ - Sleep problems
I am still very much struggling with getting a good sleep rhythm
In context ↗ - Pain & fibromyalgia
in a crash the brain doesn't clear up at all, I am emotional, and everything hurts
In context ↗ - Neuropathy & tingling
I've noticed a tingling sensation in my face that I treat as a warning sign
In context ↗ - Vision problems
on bad days they simply refuse to focus
In context ↗ - Light & noise sensitivity
very emotional, super sensitive to sound and dizzy
In context ↗ - Heart symptoms & palpitations
If I wake up and my heartbeat is 120+
In context ↗ - Muscle weakness
an all overwhelming heaviness as if I am moving through thick mud
In context ↗ - Temperature regulation
I have always had cold feet and sometimes hands (this was not normal before)
In context ↗ - Gut problems
I have a slight heartburn once in a while and some reflux after eating
In context ↗ - Anxiety & low mood
As soon as I feel a bit better I do get my hopes up, and with it despair about my situation
In context ↗