ME/CFS
Moderate → somewhat betterIll 21 months before improving or writingNeeds ongoing treatment
Housebound with ME/CFS, now somewhat better after rest and low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 21 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Onset 2022, diagnosed March 2024.
In context ↗ - At worst: Moderate
It’s been three years for me where I have fluctuated from mild to moderate and maybe severe for small while in the beginning.
In context ↗ - Now: Somewhat better
I have gone back to occasional work and multiple volunteer activities.
In context ↗ - Began after: stress or burnout
the only thing i can associate with my experience is the stress/trauma that was occurring at the time of “the event”
Read from 63 of their posts and comments; links to the 24 this page draws on
Summary
A teacher in their late forties fell ill in 2022 and was off work with ME/CFS from December 2023, housebound with pain at 8-9/10 each evening. Rest, low-dose naltrexone (five months to work), gabapentin, therapy and meditation lifted them to mild, and they returned to teaching in August 2024. Overdoing it at work crashed them back to moderate and they resigned; they now do occasional substitute teaching and volunteering. A hiking holiday set them back again, and major surgery slowed recovery but did not ruin their baseline. One supplement cost $74 a month.
Ask Miruvor AI
What they tried
What they credit
Also tried
nose strips· HelpedZyrtec· HelpedWellbutrin· Helpedone supplement· Helpedcannabis· Helped · wore offflexeril· Helpedmyofascial release therapy· Helpedpropranolol· Helpedmagnesium lotion· Helpedeating small meals more regularly· Helpedcutting out social media, politics and news· Helpedcold or ice on the back of my neck· Helpedbenzos· HelpedOther surgery (adrenal, lung, venoplasty)· Worselexapro· Not saidibuprofen· Not saidtramadol· Not saidoura ring· Not said
Their words about each treatment
- nose strips · Helped
I don’t find I need them all the time. But when I do it’s heaven.
In context ↗ - Zyrtec · Helped
I’m a sneezer, or at least I was. Now that I’m taking Zyrtec I don’t.
In context ↗ - meditation · Helped
I would rank this up there with LDN in terms of effectiveness.
In context ↗ - Wellbutrin · Helped
It’s only been 6 days, but I would say I see a difference in a positive way.
In context ↗ - low dose naltrexone · Helped a lot
LDN: took 5 months to work, and the typical insomnia and other things I had to deal with. I take it in the mid morning now. It has been great.
In context ↗ - one supplement · Helped
I’m currently taking one supplement that’s $74/month
In context ↗ - therapy · Helped
I find therapy to be helpful.
In context ↗ - cannabis · Helped
Cannabis used to help me to sleep. Yet now it doesn’t help.
In context ↗ - gabapentin · Helped
Gabapentin: took two weeks to work, was the first med I tried, and it did allow me more freedom in movement.
In context ↗ - lexapro · Not said
Medications LDN, gabapentin, Zyrtec, Wellbutrin, lexapro.
In context ↗ - somatic experiencing · Helped
It has had a profound impact on me so far
In context ↗ - flexeril · Helped
Typically a muscle relaxer doesn’t work for me, but I have been overly tense for a week and it’s been helpful I think.
In context ↗ - ibuprofen · Not said
They prescribed flexeril and more ibuprofen.
In context ↗ - tramadol · Not said
gave me fluids and a more powerful type of anti inflammatory - tramadol maybe
In context ↗ - myofascial release therapy · Helped
Myofascial release therapy is my thing. It relieves a lot of tension for me.
In context ↗ - propranolol · Helped
I’m currently taking propranolol to chill me out. It’s semi-helping.
In context ↗ - magnesium lotion · Helped
Magnesium lotion or anything magnesium: I have had extreme pain for most of this disease. Magnesium is bomb for muscle relaxation.
In context ↗ - oura ring · Not said
I wasn’t a ring wearer and I had no problem adjusting to the oura ring. I recommend it
In context ↗ - pacing · Helped
It wasn’t until I started doing this that I feel like if nothing else- I’ve leveled out.
In context ↗ - eye mask and ear plugs · Helped
Eye mask/ear plugs: these two things initially seemed silly to me but wow are they critical in calming my nervous system.
In context ↗ - eating small meals more regularly · Helped
I need to eat small meals more regularly. It helps me feel more normal, but that is a difficult thing to do.
In context ↗ - cutting out social media, politics and news · Helped
I completely had to remove myself from social media, politics, nearly all news. It was certainly keeping my nervous system unregulated!
In context ↗ - cold or ice on the back of my neck · Helped
putting cold or ice on the back of my neck is quite helpful
In context ↗ - benzos · Helped
Rest, eye mask, ear plugs (sometimes with emdr beats), and at it’s worst- benzos
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Worse
The first two weeks were hell. I required assistance every hour or so.
In context ↗
Approaches: CBT & mindset · Mind-body practices · Other drugs and medicines · Pacing · Radical rest · Trauma & somatic work
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 |
|---|---|---|---|
| 2022 | onset; could not wake up fully, kept teaching on and offOnset 2022, diagnosed March 2024. On and off work for 2 years. ~50%.In context ↗ | Mild | |
| December 2023 | off work on leave, housebound, pain 8-9/10 every afternoon and eveningI’ve been off since December 2023 ... The pain I experience all the time, and it goes to 8-9/10 every afternoon/evening. | Moderate | |
| May 2024 | began to feel better after five months off work, with rest and medicineI did not start feeling better until May.In context ↗ | Moderate | Low-dose naltrexone |
| August 2024 | back teaching but not pacing; wired, overstimulated, dropped lower than beforeI feel like I’m headed in the wrong direction, again. ... this down is lower than before. | Mild | |
| September 2025 | crashed after a hike on first holiday in three years; slipped from mild back to moderateWent on my first vacation in 3 years. Did a hike I should not have done. ... I have recently gone from mild-ish back to moderate | Moderate | |
| March 2026 | back to occasional work and volunteering, still unable to pace while workingI have gone back to occasional work and multiple volunteer activities.In context ↗ | Mild | Pacing and the energy envelope |
| June 2026 | major surgery; first two weeks needed help every hour, felt flu-like most nightsThe first two weeks were hell. I required assistance every hour or so.In context ↗ | Severe | |
| July 2026 | slow recovery from surgery but baseline held; substitute teaching occasionallyIt has not ruined my baseline.In context ↗ | Mild |
Adverse events
- Cetirizine (Zyrtec)“But it did initially seem to make me more fatigued” In context ↗ Side effects
- Low-dose naltrexone“No real side effects except insomnia, so we switched to the morning.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“During my LDN titration I was having horrible dreams and didn’t want to add to it.” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“The first two weeks were hell. I required assistance every hour or so.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I STILL feel the effects of overdoing it when I feel like I’ve done very little.
In context ↗ - Brain fog
My brain wasn’t fully functioning bc I forgot things, important things, multiple times throughout the day
In context ↗ - POTS & dysautonomia
I’m having other dysautonomia symptoms I don’t want to mention.
In context ↗ - Mast cell (MCAS) & allergies
I’m a sneezer, or at least I was.
In context ↗ - Sleep problems
I’ve never been someone who can or does nap. Instead just awake and so very tired.
In context ↗ - Pain & fibromyalgia
I have had extreme pain for most of this disease.
In context ↗ - Headaches & migraine
I had a headache for a week straight.
In context ↗ - Light & noise sensitivity
I have cognitive issues and also am/was overstimulated by everything I did
In context ↗ - Muscle weakness
It just seems like my legs are wasting away regardless of what I do.
In context ↗ - Neuropathy & tingling
I have experienced severe pain in my jaw and have had weird nerve things in the same area that would shoot up my skull and down the jaw
In context ↗ - Anxiety & low mood
I have never struggled so much with my brain, the feeling of impending doom, SI, all of which I did not have prior to CFS.
In context ↗ - Flu-like symptoms
I have gone to bed most nights feeling like I have the flu or am getting sick.
In context ↗ - Temperature regulation
Very much so. And reading another’s comment just now has reminded me that putting cold or ice on the back of my neck is quite helpful!
In context ↗
Ask Miruvor AI
Similar stories
-
Just shy of bedbound with ME/CFS, now much better with pacing and low-dose naltrexone
Disabled by a March 2020 COVID infection and a 2021 reinfection, they spent over a year just shy of bedbound with ME/CFS, hyperadrenergic POTS and slow digestion. They credited pacing and radical rest, low-dose naltrexone, THC and therapy for slowly climbing…
-
Not enough detail to draw a path
Severe ME/CFS after virus, now somewhat better with pacing and POTS medication
Island 53545 became ill at 19 after a virus, had POTS for over a decade and managed to work for a few years, then became severe in 2015 and had to quit work. They credit pacing, POTS medication, migraine treatment, therapy and medical marijuana for…
-
Bedridden with long COVID, now nearly back to normal after time and guided meditation
He caught COVID in June 2023 and was bedridden for about 18 months, with a severe relapse, and had PEM, anxiety, brain fog and light and sound sensitivity. He credits time, guided meditation, pregnenolone, Vyvanse, a ketogenic diet and stand-up paddle…
-
Not enough detail to draw a path
Bedbound then housebound with ME/CFS, now much better, credits low-dose naltrexone
Swan 81993 developed long COVID a few years ago, mostly functional until a reinfection before diagnosis left them bedbound for months and housebound for over a year, unable to work. Antihistamines, a low histamine diet and mast cell stabilisers eased their…