ME/CFS
Moderate → somewhat betterIll 2.5 years before improving or writingNeeds ongoing treatment
Mild-moderate ME/CFS with PEM after COVID, some improvement with pacing and medication
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I'm diagnosed with me/cfs, and meet criteria
In context ↗ - At worst: Moderate
I've been at the mild end of moderate for about 4 months now. I can work from home, but can't leave the house and work on the same day without PEM.
In context ↗ - Now: Somewhat better
strict pacing and LDA/pyridostigmine seem to have brought me back closer to mild ... Symptoms are starting to worsen
- Began after: COVID
I got covid 2 years later and that's what triggered my ME.
Read from 79 of their posts and comments; links to the 34 this page draws on
Summary
Orchid 74880 developed ME/CFS after a COVID infection in February 2024 and was diagnosed that December. They added low-dose Abilify, pyridostigmine, propranolol, antihistamines and nicotine patches to existing low-dose naltrexone for pain. They slipped from mild to mild-moderate, with months when leaving the house caused PEM, then improved with pacing and medication. Symptoms were worsening again by August 2026.
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What they tried
What they credit
Also tried
throat lozenges· HelpedLDN· HelpedLDA (abilify)· Helpedvenlafaxine· Helpedbaclofen· Helpedbeta blocker (propranolol)· Helpedfamotidine (H2 blocker)· Helpedsocial worker / therapy· Helpedphysio exercises and stretching· Helpedmassage· Helpednaproxen· Helpedbenzos· Helpedturmeric· Helpedmagnesium· Helpedsimple carbs· HelpedNurtec· Helpedfitbit· HelpedPPI· No changeCoQ10· No changeketamine· Worseprazosin· Worseloxapine· Not saidmodafinil· Not saidmirtazapine· Not saidextra salt (crackers, chips, popcorn)· Not saidpaxlovid· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- throat lozenges · Helped
Throat lozenges seem to help a bit when my sore throats flare, but not as much as when I'm actually sick.
In context ↗ - PPI · No change
Thanks, already on a PPI and it doesn't do much.
In context ↗ - LDN · Helped
Also on higher doses, I take 6.25mg 2x a day. Helps me with pain and brain fog
In context ↗ - LDA (abilify) · Helped
For LDA, I did 1mg every morning for a week and then 2mg every morning, which is my current dose.
In context ↗ - loxapine · Not said
I trialed (high dose) abilify and loxapine.
In context ↗ - ketamine · Worse
Gave me a day of PEM every session once I developed ME / long covid though.
In context ↗ - modafinil · Not said
I used to be on modafinil for my narcolepsy
In context ↗ - Ritalin (methylphenidate) · Helped
If I pace properly it doesn't trigger PEM for me. ... it really does help my quality of life
In context ↗ - venlafaxine · Helped
I really like my venlaflaxine. It works well for me.
In context ↗ - baclofen · Helped
I take baclofen at night to help consolidate my night time sleep. ... It works pretty well for me.
- mirtazapine · Not said
I was on it pre me/cfs and it made me so hungry I would eat to the point of GI distress
In context ↗ - prazosin · Worse
I can't take prazosin bc it worsens my cataplexy from narcolepsy but it did work when I was on it
In context ↗ - beta blocker (propranolol) · Helped
Love my beta blocker. ... it really helps me with the physical anxiety I would feel a lot and my orthostatic tachycardia and just general tachycardia I was dealing with
In context ↗ - H1 blockers / antihistamines · Helped
Personally, nicotine patches and antihistamines have had the highest impact for me in terms of non-prescription interventions.
In context ↗ - famotidine (H2 blocker) · Helped
Helps my digestive issues which are most likely histamine/mcas related. No negative side effects for me
In context ↗ - nicotine patches · Helped
I did a 10 day patch protocol. ... I was mild-medium, I seem to be back to mild
In context ↗ - pacing · Helped
strict pacing and LDA/pyridostigmine seem to have brought me back closer to mild
In context ↗ - social worker / therapy · Helped
Working with a social worker who understands chronic illness has been really helpful.
In context ↗ - physio exercises and stretching · Helped
I'm able to do my physio exercises for my hypermobility and a short little stretch routine if I don't leave the house that day, which helps my pain management a lot.
In context ↗ - massage · Helped
I get a massage every two weeks after going to the pharmacy to help manage my pain from inactivity and symptomatic hypermobility
In context ↗ - naproxen · Helped
I take naproxen every night to help manage pain so I can get descent sleep. On bad days I also take a morning dose.
In context ↗ - benzos · Helped
Since developing ME I also take it for PEM prevention and it helps so much.
In context ↗ - CoQ10 · No change
Coming off CoQ10 because I don't notice a difference on days/weeks where I forget a dose
In context ↗ - turmeric · Helped
Turmeric and magnesium I think are doing a tiny bit
In context ↗ - magnesium · Helped
the magnesium helps me fall asleep so I'll stick with those
In context ↗ - extra salt (crackers, chips, popcorn) · Not said
I'll snack on crackers, tortilla chips or popcorn to help keep my salt intake up for the orthodontic intolerance.
In context ↗ - simple carbs · Helped
I do find simple carbs improves my symptoms.
In context ↗ - Nurtec · Helped
Helps me a lot as long as I take it early on
In context ↗ - pyridostigmine (Mestinon) · Helped
LDA and pyridostigmine by advocating for myself with my PCP. Both have helped me quite a bit
In context ↗ - paxlovid · Not said
took paxlovid during my infection, and still ended up with me/cfs
In context ↗ - fitbit · Helped
I can't check my HRV or sleep stats anymore which help me pace and plan my next couple days.
In context ↗ - COVID vaccination as treatment · Not said
Just a but if extra fatigue and pain later that day and the next day. Personally I didn't get any PEM from it.
In context ↗
Approaches: H1 antihistamines · POTS medication · Pacing · Stimulants
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 |
|---|---|---|---|
| February 2024 | COVID infection; ME/CFS beginsdeveloped ME after covid infection in Feb 2024In context ↗ | Mild | |
| January 2025 | slowly drifted to the mild end of moderate from overdoing itI was mild for about a year, but was slowly becoming moderate without realizing it as I was overdoing it.In context ↗ | Moderate | |
| May 2025 | seemed to be back to mild after starting low-dose AbilifyThis past week I seem to be back to mild.In context ↗ | Mild | Low-dose Abilify / aripiprazole |
| July 2025 | PEM after an intense massagemy PEM today is very obvious. Lots of pain, brain fog, sore throat & lymph nodes, insomnia last night etc.In context ↗ | Mild | |
| December 2025 | brought back closer to mild with strict pacing and medicationthankfully strict pacing and LDA/pyridostigmine seem to have brought me back closer to mildIn context ↗ | Mild | Low-dose Abilify / aripiprazole |
| August 2026 | symptoms worsening as they expected more of themselvesSymptoms are starting to worsen, probably because I'm expecting more out of myself these daysIn context ↗ | Mild |
Adverse events
- Nicotine patches“It did fuck with my sleep a bit. Harder time falling asleep and had vivid dreams 3 times (2 of which were horrific nightmares).” In context ↗ Insomnia from treatment
- Ketamine“Gave me a day of PEM every session once I developed ME / long covid though.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Just a but if extra fatigue and pain later that day and the next day. Personally I didn't get any PEM from it.” In context ↗ Side effects
- Prazosin (Minipress)“I can't take prazosin bc it worsens my cataplexy from narcolepsy but it did work when I was on it” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“I was on it pre me/cfs and it made me so hungry I would eat to the point of GI distress so be aware that appetite increasing is a potential side effect” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I probably get mild PEM every 3-6 weeks (lasting 24-48hours)
In context ↗ - Brain fog
the fatigue and brain fog hits and I'm groggy or tired all day
In context ↗ - POTS & dysautonomia
I struggle most with orthostatic intolerence and physical exertion
In context ↗ - Mast cell (MCAS) & allergies
likely have some degree of histamine intolerance
In context ↗ - Sleep problems
I never feel rested
In context ↗ - Headaches & migraine
chronic migraines
In context ↗ - Gut problems
Helps my digestive issues which are most likely histamine/mcas related
In context ↗ - Heart symptoms & palpitations
my heart rate jumps around
In context ↗ - Anxiety & low mood
my depression flaring up and increased suicidal ideation is actually a sign that I'm going into PEM
In context ↗ - Flu-like symptoms
I would always get sore throats and ear aches that felt like infections
In context ↗
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