ME/CFS
Severe → much betterIll 6.5 years before improving or writingNeeds ongoing treatment
Just shy of bedbound with ME/CFS, now much better with pacing and low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have ME/CFS, hyperadrenergic POTS, IBS & a mystery Rheumatology issue
In context ↗ - At worst: Severe
I've spent months near bedbound/ room bound & years mostly home bound.
In context ↗ - Now: Much better
I went from mostly, but not quite bedbound to almost mild by radical rest, pacing & loads of self care.
In context ↗ - Began after: COVID
I'm disabled from March 2020 covid infection that reactivated EBV
In context ↗ - Says they never had: Mast cell (MCAS) & allergies
someone struggling with allergies/ MCAS might have a VERY different & totally valid experience than me who doesn't have that
Read from 82 of their posts and comments; links to the 37 this page draws on
Summary
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 toward mild, walking around the block on good days. They were still mostly homebound and out of work in late 2026.
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What they tried
What they credit
pacing· Helped a lot · mainradical rest· Helped a lotmedical marijuana (THC)· Helped · mainlow dose naltrexone (LDN)· Helpedgabapentin· Helpedlow fiber diet· HelpedKate Farms meal replacement shakes· Helpedgentle exercise· Helpedtherapy with a chronically ill therapist· HelpedEMDR, ART and somatic release therapy· Helpedmeditation and breathing exercises· Helpedpsilocybin microdosing· Helpediron infusion· Helpedelectrolyte gummies + water· Helped
Also tried
propranolol· Helpedcovid vaccine / boosters· Helped · wore offbirth control (junel 1/20)· Helpedoxaloacetate· HelpedTENS unit· Helpedprednisone· No changeintensive probiotic pouches· No changeiron supplements (pills)· No changevagus nerve stimulation (ear device)· No changedairy free, gluten free & low sugar diet· Worsedairy free, gluten free & low sugar diet· Worsedairy free, gluten free & low sugar diet· Worsenicotine patches· Worsemidodrine· WorseADHD meds· Worsecymbalta· Much worsepaxlovid· Not saidvibration plate· Not saidacupuncture· Not saidchinese herbs· Not said
Their words about each treatment
- medical marijuana (THC) · Helped
Marijuana was the biggest help I had.
In context ↗ - prednisone · No change
a fever prednisone couldn't break for over a year
In context ↗ - low dose naltrexone (LDN) · Helped
My dose landed at 4.5 mg at night - it took me over 2 years to dial that in.
In context ↗ - propranolol · Helped
Tweaked my hyperadrenergic POTS rx to extended release propranolol (from plain) & that helped a lot.
In context ↗ - gabapentin · Helped
My psychiatrist put me on gabapentin a little over a year ago & it's helped so much right away.
In context ↗ - pacing · Helped a lot
Hands down the most effective strategy that's helped is pacing and avoiding triggering PEM.
In context ↗ - radical rest · Helped a lot
Radical rest & pacing helped me climb out of near bedbound to flirting with mild now
In context ↗ - paxlovid · Not said
I was very close to going to the hospital with low oxygen even with paxlovid
In context ↗ - dairy free, gluten free & low sugar diet · Worse
I was dairy & gluten free + low sugar 4 mo and it made me worse
In context ↗ - low fiber diet · Helped
the only thing that helped me was eating smaller meals more frequently & drastically lowering my fiber
In context ↗ - Kate Farms meal replacement shakes · Helped
Kate Farms shakes kept me alive at my worst
In context ↗ - nicotine patches · Worse
raised my low BP more gently than midodrine can but caused wicked joint pain after a couple months
In context ↗ - midodrine · Worse
I can't tolerate midodrine
In context ↗ - covid vaccine / boosters · Helped
I usually feel great for 1-3 weeks afterwards & then slowly slide back into my long covid nonsense
In context ↗ - birth control (junel 1/20) · Helped
I hate that birth control has helped me a lot here
In context ↗ - gentle exercise · Helped
I went from barely able to walk around my house to (on high energy days) easily walking around the block & that progress took me a year of slow effort.
In context ↗ - oxaloacetate · Helped
I was taking the 100mg & seeing a minor improvement of a bit more energy.
In context ↗ - intensive probiotic pouches · No change
gluten free, dairy free, low sugar, minimal processed foods, intensive probiotic pouches, etc. ... the only thing that helped me was eating smaller meals more frequently
In context ↗ - therapy with a chronically ill therapist · Helped
I already had a therapist before I was disabled by long covid me/cfs & she was SO HELPFUL
In context ↗ - EMDR, ART and somatic release therapy · Helped
EMDR, ART (accelerated resolution therapy) and somatic release therapy helped a ton
In context ↗ - meditation and breathing exercises · Helped
calming my nerves (gabapentin, thc, meditation, breathing exercises)
In context ↗ - psilocybin microdosing · Helped
I'd say my sensory issues are maybe 10-15% improved.
In context ↗ - cymbalta · Much worse
6mo on friggin cymbalta put me into early liver failure
In context ↗ - iron supplements (pills) · No change
taking iron pills for over a year (every other day, with vitamin C, avoiding calcium) and my ferritin barely budged
In context ↗ - iron infusion · Helped
My digestion improved SO MUCH about 4-6 weeks after the infusion.
In context ↗ - ADHD meds · Worse
trying ADHD meds made me feel FOUL
In context ↗ - electrolyte gummies + water · Helped
Finding an electrolyte source I'll actually take consistently (gummies + water
In context ↗ - TENS unit · Helped
I already had a tens unit for my wicked cramps & coat hanger pain (it does help with those!)
In context ↗ - vagus nerve stimulation (ear device) · No change
I don't feel like it did anything serious for me.
In context ↗ - vibration plate · Not said
No idea if it's genuinely helpful health-wise, but I like it.
In context ↗ - acupuncture · Not said
She got me to a TCM practitioner to try acupuncture & herbs
In context ↗
Approaches: CBT & mindset · POTS medication · Diet · Mind-body practices · Other drugs and medicines · Pacing · Physiotherapy and rehab · Radical rest · Supplements · 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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| March 2020 | COVID infection; long covid beginsI'm disabled from March 2020 covid infection that reactivated EBVIn context ↗ | Not stated | |
| 2021 | reinfection left her further disabledI've been disabled since March 2020 & further disabled by a reinfection in 2021.In context ↗ | Severe | |
| 2022 | COVID reinfection, a bit worse for a few monthsIt made my long covid worse, but not drastically worse. Just like, a bit worse for a few months.In context ↗ | Severe | |
| 2022-2023 | over a year just shy of bedbound, out of workI spent a bit over a year just shy of bedbound with ME/CFSIn context ↗ | Severe | |
| August 2025 | slowly improving from moderate to mildI was moderate & am just recently becoming mildIn context ↗ | Mild | Pacing and the energy envelope |
| March 2026 | climbed out of near bedbound to flirting with mildRadical rest & pacing helped me climb out of near bedbound to flirting with mild nowIn context ↗ | Mild | Pacing and the energy envelope |
| October 2026 | iron infusion; digestion, energy, dizziness and sleep betterMy digestion improved SO MUCH about 4-6 weeks after the infusion.In context ↗ | Mild | Iron infusion / ferritin repletion |
| October 2026 | still mostly homebound but able to do and be upright moreI'm still mostly homebound, but I've been able to do more & be upright moreIn context ↗ | Mild |
Adverse events
- Elimination diets (other), Gluten-free diet, Cutting out sugar (low-sugar diet)“I was dairy & gluten free + low sugar 4 mo and it made me worse” In context ↗ Made symptoms worse
- Nicotine patches“I recently realized they were making my joint pain a lot worse” In context ↗ Made symptoms worse
- Midodrine“I can't tolerate midodrine” In context ↗ Side effects
- Combined birth control (pill, patch or ring)“My body, however, is rebelling & my periods are all over the place” In context ↗ Side effects
- Cannabis (THC, marijuana)“THC causes a little tachycardia in me, but it's not bad” In context ↗ Heart rhythm problems
- Oxaloacetate“this post just made me realize that's probably the cause of my unusually persistent heartburn” In context ↗ Gut side effects
- Gabapentin (Neurontin)“it made my brain fuzzy, so I was only on it just short of a year” In context ↗ Side effects
- Psilocybin (magic mushrooms)“microdosing throws my autonomic nervous system issues/POTS into overdrive when I tried bigger doses” In context ↗ Made symptoms worse
- “that meant increased fiber - which made me much worse & took longer to recover from” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“6mo on friggin cymbalta put me into early liver failure” In context ↗ Liver or kidney problems
- Cannabis (THC, marijuana)“Dispensary THC vape pens & gummies usually give me a headache” In context ↗ Side effects
- Stimulants (unspecified)“trying ADHD meds made me feel FOUL” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
I still get slammed back into bed alarmingly fast if I overdo it.
In context ↗ - Brain fog
everything from digestion, periods, energy, dizziness, brain fog, sleep, etc. is better
In context ↗ - POTS & dysautonomia
I still have POTS, but I'm not mouth breathing from 3 steps
In context ↗ - Gut problems
Near constant nausea is a big part of my long covid.
In context ↗ - Pain & fibromyalgia
I had phantom sunburn pain for 3 years before I saw consistent improvements.
In context ↗ - Sleep problems
For about a year the only way I could eat or sleep was to dab first
In context ↗ - Heart symptoms & palpitations
they did an echocardiogram & found out I had 2 enlarged ventricles in my heart
In context ↗ - Breathlessness
my air hunger got MUCH better
In context ↗ - Temperature regulation
I also suffer from temperature dysregulation and have floated between 97-101 F since covid disabled me.
In context ↗ - Flu-like symptoms
I had extra spicy long covid with a fever prednisone couldn't break for over a year.
In context ↗ - Light & noise sensitivity
my sensory issues are maybe 10-15% improved
In context ↗ - Anxiety & low mood
When I'm in a [mentally] dark place now, I've built up tools that help me
In context ↗ - Tinnitus
I've had this as long as I can remember, though I only learned recently at age 40ish this is not normal.
In context ↗
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