ME/CFS
Moderate → somewhat betterIll 6 years before improving or writingNeeds ongoing treatment
ME/CFS after COVID, more disabled by overwork, now somewhat better with pacing, wheelchair
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've been sick since 2020 and I have the ME/CFS version
In context ↗ - At worst: Moderate
I think I'm late mild maybe early moderate
In context ↗ - Now: Somewhat better
Ldn has improved my fatigue-brought me back from early moderate to late mild.
In context ↗ - Began after: COVID
I got Long Covid from my initial infection, and that made me disabled
Read from 107 of their posts and comments; links to the 43 this page draws on
- Jun 2026
- Mar 2026
- Oct 2026
- Feb 2023
- Aug 2023
- Oct 2023
- Nov 2023
- Aug 2024
- Dec 2023
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- Nov 2025
- Feb 2023
- Jan 2024
- Mar 2026
- Dec 2023
- Jul 2026
- Dec 2023
- Oct 2025
- Jun 2023
Summary
After COVID-19 in 2020 she was still teaching theatre 20-30 hours a week; overworking for 8-10 weeks in summer 2024 left her more disabled, never back to baseline, now working four hours a week and using a wheelchair. Pacing, rest breaks and a wheelchair help; she describes herself as late mild or early moderate.
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What they tried
What they credit
Also tried
electrolytes, salt with potassium and compression socks· Helpedelectrolytes, salt with potassium and compression socks· Helpedinhaler· Helpedmirtazapine· Helpedtrazodone· Helpedspeech therapy (brain breaks)· HelpedMeclizine· Helpedeye drops· Helpeddextroamphetamine· HelpedCBD topical cream· Helpedboswellia (Swanson 800 mg)· Helpedlow-histamine diet· Helpedginger tea with honey· Helpedginger tea with honey· Helpedwheelchair· HelpedVitron-C· Helpedpropranolol· Helpedmethylphenidate· No changelamotrigine· No changegabapentin· WorseMestinon· WorseGLP-1 (Scripps trial)· Much worsememantine· Not saidnasal spray (Flonase)· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- electrolytes, salt with potassium and compression socks · Helped
I've drunk my electrolytes and put on my compression socks -pots treatments and both have helped me
In context ↗ - inhaler · Helped
I do have some leftover breathlessness aside from my dysautonomia and my inhaler helps.
In context ↗ - mirtazapine · Helped
I had mirtazapine before which did really help but it made me really hungry at night
In context ↗ - trazodone · Helped
So I switched to trazodone and haven't noticed extra side effects?
In context ↗ - speech therapy (brain breaks) · Helped
A thing that helped me from the speech therapist is set alarms to take brain breaks throughout the day.
In context ↗ - Meclizine · Helped
I DO take meclizine 1-3 times a day but at 12.5, which is the recommended dose for my brand of vestibular issue
In context ↗ - gabapentin · Worse
gabapentin at 600mg made me feel jittery and awful, but gabapentin at 300mg makes me sleep for ages
In context ↗ - eye drops · Helped
I also find eye drops help with my eye pain.
In context ↗ - methylphenidate · No change
I am also fairly sensitive to some medications and did not like methylphenidate/didn't think it was helping enough to be worth it
In context ↗ - dextroamphetamine · Helped
I take Dextroamphetamine (generic dexedrine) and it is more helpful to me with fatigue and adhd.
In context ↗ - zyrtec (cetirizine) · Helped
I rested A LOT, started taking zyrtec daily
In context ↗ - lamotrigine · No change
I'm tapering off of it right now.
In context ↗ - memantine · Not said
I've also taken Lamotrigine and memantine together and I don't recommend it.
In context ↗ - CBD topical cream · Helped
Cbd topical helped some.
In context ↗ - midodrine · Helped
If you haven't tried midodrine that helped lessen my crashes a lot
In context ↗ - boswellia (Swanson 800 mg) · Helped
as far as I know it can be credited with my migraines being much less severe now
In context ↗ - nasal spray (Flonase) · Not said
My allergy pills only go so far and I need the nasal spray now.
In context ↗ - Mestinon · Worse
I tried it but it gave me worse headaches
In context ↗ - low-histamine diet · Helped
I went with low histamine rather than FODMAP. It actually has really helped my GI symptoms
In context ↗ - ginger tea with honey · Helped
I love ginger tea, I put honey in it, and it helps my stomach settle
In context ↗ - GLP-1 (Scripps trial) · Much worse
Started GLP-1, felt MUCH worse, stopped
In context ↗ - wheelchair · Helped
I got my wheelchair!!! I love her she's blue and I've been working part time and it's much better without having to stand constantly.
In context ↗ - Vitron-C · Helped
I take Vitron-C for my low iron, usually with food to be easier on my stomach.
In context ↗ - LDN (low-dose naltrexone) · Helped
Ldn has improved my fatigue-brought me back from early moderate to late mild.
In context ↗ - ME/CFS-competent physical therapy · Helped
I have made progress in my PT (my pt doesn't push me to crash)
In context ↗ - pacing · Helped
Pacing and not becoming infected again prevents worsening and may bring some improvement, it did for me!
In context ↗ - aggressive rest · Helped
Also resting aggressively did bring my ability to do some things back.
In context ↗ - propranolol · Helped
I take propranolol for it and it helps.
In context ↗ - COVID vaccination as treatment · Not said
I recently had novavax and flu shot together - I had sore arms and some added fatigue but not too crazy. I also got a sore throat that lasted several days.
In context ↗
Approaches: H1 antihistamines · POTS medication · Pacing · Physiotherapy and rehab · Radical rest
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 |
|---|---|---|---|
| 2020 | COVID-19 infection; Long Covid beganI was still teaching theatre (including dance) like 20-30 hours a week when I first got sickIn context ↗ | Mild | |
| summer 2024 | worked mostly full time for 8-10 weeks, went into rolling PEM and never returned to previous baselineafter working 8-10 weeks mostly full time I was in rolling PEM, became more severe, and have never gone back to my previous baselineIn context ↗ | Moderate | |
| March 2026 | got a wheelchair and returned to part-time teachingI got my wheelchair!!! I love her she's blue and I've been working part time and it's much better without having to stand constantlyIn context ↗ | Mild | |
| October 2026 | late mild, still working a few hours a week and using a wheelchairLdn has improved my fatigue-brought me back from early moderate to late mildIn context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Mirtazapine (Remeron)“it made me really hungry at night and then I would eat at night and I think that influenced the probably GERD that I now have. and I gained weight on it b/c of that.” In context ↗ Side effects
- “I was put on a medicine on way too high of a dose and it made me feel horrible and had the opposite effect of what it should have” In context ↗ Side effects
- Gabapentin (Neurontin)“gabapentin at 600mg made me feel jittery and awful” In context ↗ Side effects
- Gabapentin (Neurontin)“some people take it throughout the day but it makes me sleeppppppp.” In context ↗ Side effects
- Compression garments“my feet were maybe from these compression socks that were made badly. So I was already susceptible to compression nerve injuries and then it got a lot worse” In context ↗ Nerve pain
- COVID vaccination as treatment“I recently had novavax and flu shot together - I had sore arms and some added fatigue but not too crazy. I also got a sore throat that lasted several days.” In context ↗ Side effects
- COVID vaccination as treatment“I got a rash (pityriasis rosea) from Moderna” In context ↗ Other
- GLP-1 drugs (unspecified)“More worse insomnia (I was like wow oh shit it can still get worse)” In context ↗ Insomnia from treatment
- GLP-1 drugs (unspecified)“the nausea never subsided it just got worse and I also had extra fatigue, stronger insomnia, derealization, no appetite” In context ↗ Gut side effects
- GLP-1 drugs (unspecified)“Started GLP-1, felt MUCH worse, stopped” In context ↗ Made symptoms worse
- GLP-1 drugs (unspecified)“EXTRA FATIGUE like our type of fatigue, maybe extra headache.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“-difficulties breathing - severe tight chest - mumbling words” In context ↗ Side effects
- Mestinon / pyridostigmine“I tried it but it gave me worse headaches” In context ↗ Side effects
- Propranolol (Inderal)“it does make me dizzy when I'm standing” In context ↗ Side effects
- “it gave me a “dark, fast feeling” kind of like jittery i guess and maybe like dark flashing in my head?” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I got cocky and now I've been in PEM for five days and I'm regretting pushing it
In context ↗ - Brain fog
And my memory is quite bad
In context ↗ - POTS & dysautonomia
I have dysautonomia (nervous system dysfunction), as many with long covid do
In context ↗ - Sleep problems
I usually sleep for closer to 16-18 hours a few times a week
In context ↗ - Pain & fibromyalgia
I'm generally in a lot less pain than that the beginning
In context ↗ - Headaches & migraine
I have vestibular migraines
In context ↗ - Gut problems
It actually has really helped my GI symptoms
In context ↗ - Light & noise sensitivity
sunlight can cause my eyes searing pain
In context ↗ - Breathlessness
I do have some leftover breathlessness aside from my dysautonomia and my inhaler helps.
In context ↗ - Neuropathy & tingling
for my hands and arms it seemed like I was compressing a nerve in my chest that was affecting them
In context ↗ - Anxiety & low mood
I have adhd and long covid and depression
In context ↗ - Temperature regulation
HEAT is a huge trigger for me!
In context ↗ - Vision problems
I have a very impaired VOR and I think a convergence problem
In context ↗
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