ME/CFS
Moderate → no benefitIll for 15 years
ME/CFS from mild to more severe; graded exercise made it worse, LDN and Adderall tried
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 15 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Got CMV (Cytomegalovirus) when I was 17 which trigger CFS symptoms.
In context ↗ - At worst: Moderate
just taking out the trash or washing a few dishes before I have to lie down is incredibly difficult
In context ↗ - Now: No benefit
I used to be relatively mild as far as CFS goes, but getting mono several years after CFS drastically sped up my decline.
In context ↗ - Began after: another virus
Got CMV (Cytomegalovirus) when I was 17 which trigger CFS symptoms.
In context ↗
Read from 108 of their posts and comments; links to the 37 this page draws on
Summary
A US man fell ill at 17 after CMV and spent almost a year sleeping 20 hours a day; mono five years later and further infections pushed him from mild to more severe. Graded exercise and sleep-schedule therapy made him worse; low-dose naltrexone eased nerve pain and headaches before fading, and Adderall eased brain fog and greatly improved orthostatic intolerance. Pfizer doses caused weeks of flu-like illness, with throat sores after the first.
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What they tried
Also tried
magnesium· Helpedhydrocodone· Helpedliquid lidocaine· Helpedextra salt, liquid IV packs and other fluids· HelpedAdderall (extended and instant release)· Helpedpacing / respecting limits· Helpedlow-dose naltrexone (LDN)· Helped · wore offlysine· Helpedgreen tea (sencha, gyokuro)· Helpedspecial meal plans· No changedeviated septum and nasal polyp scarring surgery· Worseice bath· Worsetrazodone· WorsePfizer COVID vaccine (two doses and a booster)· Worsezinc· Worseflu shot and tetanus shot· Worsegraded exercise therapy and physical therapy· Much worsesleep restriction / sleep schedule adjustment· Much worseamitriptyline· Not saidover the counter sleep aid· Not said
Their words about each treatment
- graded exercise therapy and physical therapy · Much worse
GET messed me up pretty bad. I think that really contributed to a progression in my severity.
In context ↗ - sleep restriction / sleep schedule adjustment · Much worse
a sleep specialist prescribed sleep restriction for me. Seriously messed me up even worse
In context ↗ - deviated septum and nasal polyp scarring surgery · Worse
I had this same surgery (along with scarring of the polyps at the same time). Recovery from anesthesia was insanely rough for me.
In context ↗ - magnesium · Helped
Magnesium has seemed to help with that a bit and also helps with my sleep disorders.
In context ↗ - hydrocodone · Helped
The only thing that helps those is that I have some hydrocodone that I will take a very small dose of.
In context ↗ - liquid lidocaine · Helped
Placing liquid lidocaine directly on the sore area helped quite a bit.
In context ↗ - special meal plans · No change
I’ve tried several special meal plan thing and haven’t noticed them helping in the slightest.
In context ↗ - extra salt, liquid IV packs and other fluids · Helped
adding those liquid IV packs or something similar to my water can help a bit
In context ↗ - Adderall (extended and instant release) · Helped
I started taking a low dose of extended release adderall (10mg).
In context ↗ - ice bath · Worse
overall (for me at least) ends up making things worse
In context ↗ - trazodone · Worse
Terrible hungover feeling all day, like really bad making daily functions significantly worse.
In context ↗ - Pfizer COVID vaccine (two doses and a booster) · Worse
Overall I had fairly severe side effects for about 3 weeks after each dose. Took me about 2 months to return to my baseline.
In context ↗ - amitriptyline · Not said
I’ve tried trazodone, Amitriptyline, and several other things to help with sleep. All of those either had no effect or bad side effects.
In context ↗ - over the counter sleep aid · Not said
Can try taking a little over the counter sleep aid or something. Doesn’t always work, and I don’t wake up feeling super great
In context ↗ - pacing / respecting limits · Helped
I’m starting to see the benefits of respecting my limits.
In context ↗ - low-dose naltrexone (LDN) · Helped
When I first starting taking it I noticed an insane improvement in my morning energy levels.
In context ↗ - zinc · Worse
biggest negative I’ve noticed for myself is if I take Zinc
In context ↗ - lysine · Helped
it consistently works to prevent severity or increase recovery time. One of my few supplements I see any noticeable effect from.
In context ↗ - flu shot and tetanus shot · Worse
Have recently had a flu shot and a tetanus shot. Pretty much feels like I have the flu for about a week.
In context ↗ - green tea (sencha, gyokuro) · Helped
Sencha, and specifically gyokuro, is the same effect. ... Definitely the most benefit from green teas though.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2011 (age 17) | CMV triggered CFS; in bed sleeping 20 hours a day for almost a yearGot CMV (Cytomegalovirus) when I was 17 which trigger CFS symptoms. Spent almost a year sleeping 20 hours a day.In context ↗ | |
| ~2012 | back to snowboarding and running but hit a wall and crashed each timeThe first few years I had CFS (didn’t know I did) I still did all the crazy active things I always had.In context ↗ | |
| ~2013 | graded exercise/physical therapy to build stamina contributed to worseninggot sent to physical therapy and put on a graded exercise plan. It was actually very light and very reasonable. Still never got back to where I was before starting.In context ↗ | |
| ~2016 (5 years after onset) | mono kicked severity up several notchesGot mono 5 years later and that just kicked the severity up several notches.In context ↗ | |
| 2018-03 | at 24 could no longer work even part time; days in bed after any exertionAt 24 I can still perform physically demanding tasks in an emergency, but will pay for it with days in bed feeling awful.In context ↗ | |
| 2019-10 | low-dose extended-release Adderall took the edge off brain fog and orthostatic intoleranceI started taking a low dose of extended release adderall (10mg). I don’t feel amazing but it’s been taking a bit of the edge off of the brain fog.In context ↗ | Amphetamine salts (Adderall) |
| 2021-05 | Pfizer covid vaccine doses caused weeks of flu-like illness and throat sores each timeI got pretty sick after the first dose. Got horrible sores in my throat and flu-like symptoms to the point I had to go to urgent care.In context ↗ | |
| 2023-11 | low-dose naltrexone improved morning energy, sleep and nerve painWhen I first starting taking it I noticed an insane improvement in my morning energy levels.In context ↗ | Low-dose naltrexone |
| 2024-07 | LDN benefit faded, higher dose did not help, came off itUnfortunately a few weeks ago the positive effects seemed to be drastically declining. Upping my dosage didn’t seem to help at allIn context ↗ | |
| 2024-12 | off naltrexone, symptoms more severe than while on it, trying other things one at a timeHaving been off it a while I notice a much higher severity of symptoms than when on naltrexone (even after those first good weeks).In context ↗ |
Adverse events
- Graded exercise therapy (GET)“GET messed me up pretty bad. I think that really contributed to a progression in my severity. ... Still never got back to where I was before starting.” Made symptoms worse
- “a sleep specialist prescribed sleep restriction for me. Seriously messed me up even worse.” In context ↗ Made symptoms worse
- “Tried sleep schedule (before knowing I had CFS) with forced waking/sleeping hours but that made things way worse.” In context ↗ Made symptoms worse
- “I’ve tried several special meal plan thing and haven’t noticed them helping in the slightest. Just extra tiring trying to follow them.” In context ↗ Other
- Amphetamine salts (Adderall)“I also crash pretty hard for a day or two after taking it. Initially I tried taking it daily while pacing but the crash was very severe after a while.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“It also delayed the crash much longer so it took a couple months for me to crash (but I crashed really hard eventually).” In context ↗ Made symptoms worse
- Trazodone (Desyrel)“Sleep felt even less restorative than usual. Terrible hungover feeling all day, like really bad making daily functions significantly worse.” In context ↗ Side effects
- Amitriptyline (Elavil)“I’ve tried trazodone, Amitriptyline, and several other things to help with sleep. All of those either had no effect or bad side effects.” In context ↗ Side effects
- Cryotherapy and cold exposure“but overall (for me at least) ends up making things worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I tried 0.5mg at first and felt like crap. Symptoms went away quick after dropping though.” In context ↗ Side effects
- Low-dose naltrexone“Also noticed with dosage increases I can experience pretty vivid nightmares. Like jumping out of bed and attacking things level night terrors” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“Mostly just felt kind of groggy and had no benefits.” In context ↗ Side effects
- COVID vaccination as treatment“I felt terrible after my first dose. I even ended up having to go to urgent care. Terrible sores in my throat and general flu symptoms.” In context ↗ Side effects
- COVID vaccination as treatment“First night I was just shaking uncontrollably, the fever lasted several days.” In context ↗ Side effects
- “Have recently had a flu shot and a tetanus shot. Pretty much feels like I have the flu for about a week.” In context ↗ Side effects
- Sinus, jaw and tonsil surgery“Recovery from anesthesia was insanely rough for me. The night after surgery and the next day had insane nausea.” In context ↗ Side effects
- Zinc“Interesting, biggest negative I’ve noticed for myself is if I take Zinc.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
PEM is very different from the usual post-workout “tired”.
In context ↗ - Brain fog
The biggest thing is it takes the edge off of my brain fog.
In context ↗ - Sleep problems
I can sleep like 14-20 hours for several days straight or not sleep at all for like 50-60 hours.
In context ↗ - Pain & fibromyalgia
I do get shooting pains. Usually in my wrists, elbows, or side of chest.
In context ↗ - Headaches & migraine
I get horrible, painful headaches (with a variety of pain types) everyday.
In context ↗ - Light & noise sensitivity
I have light/sounds sensitivity all the time.
In context ↗ - Neuropathy & tingling
I get like stabbing or shocking pains randomly usually in like elbows, wrists, or ankles sometimes my chest.
In context ↗ - Anxiety & low mood
I also get anxiety when I now there is a task I will have to do.
In context ↗ - Flu-like symptoms
Incredibly severe sore throat with PEM. It turns into giant sores.
In context ↗ - Temperature regulation
Still though I would wake up sweating.
In context ↗