ME/CFS
Severe → much betterIll 25 years before improving or writingNeeds ongoing treatment
Too weak to open ketchup packet, now much better with ME/CFS, crediting rest and DXM
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 25 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have diagnosed me/CFS though so that comes with the PEM
In context ↗ - At worst: Severe
I went from severe to mostly moderate. DXM, Lyrica, aggressive resting.
In context ↗ - Now: Much better
I am very fortunate to have come back from the edge of severe by having the time and space to do aggressive resting.
In context ↗ - Began after: another virus
In retrospect I think it started with this crazy fifth disease infection. I got it way worse than my siblings
Read from 216 of their posts and comments; links to the 57 this page draws on
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Summary
Her illness dates to a parvovirus infection at eleven, followed by an exposure to mono and a six-month sore throat; COVID-19 in 2022 left her too weak to open a ketchup packet. She credits improvement to aggressive rest, nightly DXM, pregabalin and cyclobenzaprine, and by 2025 called herself mostly moderate, still crashing and limited to twelve hours of work a week.
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What they tried
What they credit
Pacing· Helped a lotAggressive rest· Helped a lot · mainLyrica (pregabalin)· Helped a lot · mainDXM (dextromethorphan)· Helped a lot · mainGABA· Helped a lotRitalin· HelpedSSRI (added for PMDD)· HelpedCannabis / THC edibles· HelpedVistaril (hydroxyzine)· HelpedSleeping whenever my body wants· Helped
Also tried
Prazosin (alpha blocker)· HelpedCymbalta (duloxetine)· HelpedMelatonin· HelpedFlexeril (cyclobenzaprine)· HelpedShower chair· HelpedAmlodipine· HelpedCBD/THC balm· HelpedPropranolol· HelpedPsoriatic arthritis treatment· HelpedDaylio app· HelpedGatorade· HelpedNoise cancelling headphones· HelpedVicks VapoRub· HelpedNAC· No changeZyrtec· No changeFamotidine· No changePsilocybin mushrooms· WorseKetamine· WorseCPAP· WorseTherapy· WorseWalking regime· WorsePhysical therapy· WorseWellbutrin (bupropion)· WorseBuspirone· WorseCOVID vaccine / booster· Not saidMagnesium· Not saidSeroquel (quetiapine)· Not saidLexapro· Not saidOmeprazole· Not saidAmbien· Not said
Their words about each treatment
- Ritalin · Helped
I do a Ritalin and cannabis combo and it's the only thing that keeps me mildly functional.
In context ↗ - Prazosin (alpha blocker) · Helped
My psychiatrist gave me an alpha blocker (?) called Prazosin and it has helped cut down these episodes
In context ↗ - Cymbalta (duloxetine) · Helped
It's the best thing for my depression.
In context ↗ - SSRI (added for PMDD) · Helped
Adding a SSRI for the last three years for my PMDD was the last key in my psych puzzle. I am very happy and stable now.
In context ↗ - Cannabis / THC edibles · Helped
Edibles are the only thing that allows me to get out of bed some days.
In context ↗ - Melatonin · Helped
they offered me one and I woke up feeling like a fuckin' Disney princess
In context ↗ - Flexeril (cyclobenzaprine) · Helped
I've been taking a muscle relaxer which has allowed me to walk more than a block
In context ↗ - Pacing · Helped a lot
I've gotten better suddenly, I think because I've learned to pace correctly.
In context ↗ - Aggressive rest · Helped a lot
I would have never gotten better without resting.
In context ↗ - Shower chair · Helped
Shower chair changed my life.
In context ↗ - COVID vaccine / booster · Not said
I felt better when I had covid and after getting the shots so who TF knows.
In context ↗ - Amlodipine · Helped
once I finally got on amlodipone I don't suffer so much. My temperature is much more regulated.
In context ↗ - Psilocybin mushrooms · Worse
I took some mushrooms and I thought it would help me because it gives you some energy and makes you feel good. It just made me hyper aware of how every inch of my body hurts.
In context ↗ - CBD/THC balm · Helped
I have a CBD/THC balm and it works incredibly well.
In context ↗ - Lyrica (pregabalin) · Helped a lot
I really am much better on the Lyrica ... about 75% of the muscle pain gets better with nerve pain meds.
In context ↗ - DXM (dextromethorphan) · Helped a lot
I take DXM to help prevent a crash after a high activity day and boy does it fucking work for me.
In context ↗ - GABA · Helped a lot
I've been taking GABA and it helps a lot with my energy.
In context ↗ - NAC · No change
I don't notice such a change with it but I like the taste of it!
In context ↗ - Magnesium · Not said
Magnesium maybe helps but I'm sure the Flexeril helps.
In context ↗ - Ketamine · Worse
one time I tried Ketamine and it was awful. Just felt like a crash.
In context ↗ - Seroquel (quetiapine) · Not said
I was on it for years and it occasionally put me to sleep but when it didn't put me to sleep it gave me the worst insomnia and restlessness.
In context ↗ - CPAP · Worse
I can't use my CPAP because of my severe sinusitis.
In context ↗ - Lexapro · Not said
Lexapro gives me this side effect but Cymbalta doesn't!
In context ↗ - Therapy · Worse
Being forced to do therapy just drains my physical battery for no reason and with no benefit.
In context ↗ - Walking regime · Worse
Before I knew I was sick I started a walking regime, trying to build up every day. Surprise, it was a trainwreck.
In context ↗ - Physical therapy · Worse
It didn't help and I slipped a bit in my abilities.
In context ↗ - Propranolol · Helped
Keep your heart rate down as much as possible. I use Propranolol.
In context ↗ - Zyrtec · No change
I take Zyrtec and Famotidine and it doesn't help at all!
In context ↗ - Vistaril (hydroxyzine) · Helped
Vistaril and Lyrica help the most along with the propanol.
In context ↗ - Omeprazole · Not said
I take Hydroxyzine, Zyrtec, Famotidine, and Omeprazole.
In context ↗ - Psoriatic arthritis treatment · Helped
My rheumatologist is pretty sure I have PsA and I'm being treated for it. It is helping a good amount with the joint pain.
In context ↗ - Sleeping whenever my body wants · Helped
I honestly feel so much better. I wish I did this so much sooner.
In context ↗ - Daylio app · Helped
I've been really happy with Daylio.
In context ↗ - Wellbutrin (bupropion) · Worse
I had a horrible reaction to Wellbutrin and Buspirone and I will never know which one caused it.
In context ↗ - Ambien · Not said
Wellbutrin, Buspirone, Ambian are three meds I'll never take again.
In context ↗ - Gatorade · Helped
I think Gatorade might be helping me slightly?
In context ↗ - Noise cancelling headphones · Helped
I've started wearing noise canceling headphones to movies. Game changer.
In context ↗ - Vicks VapoRub · Helped
I've weirdly found Vicks vapor rub to be helpful.
In context ↗
Approaches: H1 antihistamines · Amino acids and carnitine · Other drugs and medicines · Pacing · Radical rest · 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. 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 |
|---|---|---|---|
| age 11 | fifth disease (parvovirus) infection, then constant lethargyI had a ton of lethargy but I just thought, I just hit puberty, I'm becoming a teenager, this is normal.In context ↗ | Mild | |
| college | mono exposure, slept through classes, quit her sportI started sleeping through all my classes, had to quit my sport, couldn't force myself to wake upIn context ↗ | Mild | |
| — | a non-Covid cold after which her arms burned holding a phoneThen I got a random cold that wasn't Covid but that's when my arms started burning just holding my phone.In context ↗ | Not stated | |
| 2022 | COVID-19; felt better while infected, then much sickerCovid sealed the deal for me. ... I was too weak to open a ketchup packet.In context ↗ | Severe | |
| 2023-06-28 | learned to pace; walking the dog two blocks, working two days a weekI've gotten better suddenly, I think because I've learned to pace correctly. I can walk my dog for two blocks a couple times a day which is a major improvement.In context ↗ | Moderate | Pacing and the energy envelope |
| 2024-08-10 | ME/CFS got worseMy ME/CFS got worse and I entered my late 30's so I imagine that's why I gained weight.In context ↗ | Severe | |
| 2025-03-25 | aggressive rest plus nightly DXM and pregabalin; able to attend most family events againI would have never gotten better without resting. I had to miss important family events but now I am able to attend most things.In context ↗ | Moderate | Radical rest |
| 2026-07-06 | started taking pregabalin three times a day instead of once; six days of almost no pain and two flights of stairsI climbed two sets of stairs and didn't stop. I took out the garbage (?) I have almost no pain.In context ↗ | Moderate | |
| 2026-07-31 | came back from the edge of severe with aggressive restingI am very fortunate to have come back from the edge of severe by having the time and space to do aggressive resting.In context ↗ | Moderate | Radical rest |
Adverse events
- Methylphenidate (Ritalin, Concerta)“if I take it on an empty stomach it can be overstimulating ... it just makes the coming crash four times as bad” In context ↗ Made symptoms worse
- Psilocybin (magic mushrooms)“I took some mushrooms and I thought it would help me because it gives you some energy and makes you feel good. It just made me hyper aware of how every inch of my body hurts.” In context ↗ Made symptoms worse
- CPAP and sleep apnoea treatment“I can't use my CPAP because of my severe sinusitis. I wake up suffocating because the mask keeps my mouth closed.” In context ↗ Side effects
- Pregabalin (Lyrica)“I have missed some pregabalin doses and I got basically all those symptoms. I get hot and cold and nauseous, anxious, can't sleep.” In context ↗ Withdrawal problems
- Quetiapine (Seroquel)“I was on it for years and it occasionally put me to sleep but when it didn't put me to sleep it gave me the worst insomnia and restlessness.” In context ↗ Insomnia from treatment
- Quetiapine (Seroquel)“Makes you very hungry though!” In context ↗ Side effects
- Duloxetine (Cymbalta)“Also it makes my belly a little crampy.” In context ↗ Gut side effects
- Duloxetine (Cymbalta)“I get lightheaded if I miss a dose is all.” In context ↗ Withdrawal problems
- Duloxetine (Cymbalta), Antidepressants (unspecified), Escitalopram (Lexapro), Bupropion (Wellbutrin)“I missed two days of my SSRI and it made me quite sick to my butt.” In context ↗ Withdrawal problems
- “I had a horrible reaction to Wellbutrin and Buspirone and I will never know which one caused it.” In context ↗ Side effects
- Graded rehab and self-made programmes“Before I knew I was sick I started a walking regime, trying to build up every day. Surprise, it was a trainwreck.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“I did because I didn't want to be labeled as not following treatment. It didn't help and I slipped a bit in my abilities.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“THC gummies help with my pain but I'm like the only stoner in the world who can't sleep on it.” In context ↗ Insomnia from treatment
- Methylphenidate (Ritalin, Concerta)“I get methylphenidate and I often over do it because it gives me energy that my body doesn't actually have. It's like writing a bad check.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
a sore throat is the first sign that if I don't slow down I'm going into PEM
In context ↗ - Brain fog
I get that all the time, especially after a long day
In context ↗ - Sleep problems
I'm often better if I stay up a full 24 hours ... then I'm sleeping 24-36 hours if I don't trigger PEM
In context ↗ - Pain & fibromyalgia
my doctor gave me Lyrica for Fibro and it is helping my pain a lot
In context ↗ - Muscle weakness
Pregabalin treats my extreme muscle fatigue, which I suppose is actually fibromyalgia.
In context ↗ - Flu-like symptoms
Symptoms vary but I get extreme muscle weakness, flu-like symptoms, inability to sleep even though I'm so exhausted
In context ↗ - Temperature regulation
I have full body cold sweats that then cause me to wake up freezing probably two or three nights a week.
In context ↗ - Light & noise sensitivity
lights and sounds are overwhelming.
In context ↗ - Gut problems
I feel like I have food stuck in my throat all the time and get a lot of nausea.
In context ↗ - Breathlessness
I still get winded fast and I can't do two sets of stairs without a break
In context ↗ - Headaches & migraine
I get this weird pain it in my brainstem and that helps
In context ↗ - Neuropathy & tingling
for me it seems to be nerve pain, maybe fibromyalgia
In context ↗ - Anxiety & low mood
It's the best thing for my depression.
In context ↗
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