ME/CFS
Very severe → relapsedIll 13 years before improving or writingNeeds ongoing treatment
Mostly in bed with ME/CFS for years, improved to mild, then relapsed and bedridden again
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 13 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
It was months of taking it, so like all things CFS it's hard to know what is actually working and what is just time
In context ↗ - At worst: Very severe
8 months later I'm back to 24hrs/day in a darkened room
In context ↗ - Now: Relapsed
Tried another med that seems to help everyone and then crashed after a week. Back to symptoms I had to deal with last year and declining...again...
In context ↗ - Began after: stress or burnout
Mine seemed to start after being excited during a drive back home from Christmas break.
- Says they never had: Mast cell (MCAS) & allergies
I don't seem to have mcas
Read from 87 of their posts and comments; links to the 38 this page draws on
- May 2021
- Sep 2025
- Jul 2026
- Apr 2015
- Jun 2016
- May 2016
- Jan 2019
- Mar 2026
- Nov 2023
- Oct 2025
- Mar 2023
- Jun 2026
- May 2021
- Aug 2026
- Nov 2025
- Nov 2025
- Nov 2025
- Apr 2026
- May 2026
- Jul 2026
- Jul 2026
- Jul 2026
- Jul 2026
- Feb 2016
- Sep 2018
- Nov 2018
- Dec 2025
- Mar 2026
- May 2026
- Apr 2015
- Mar 2023
- Oct 2025
- Oct 2025
- Jan 2026
- Mar 2026
- Apr 2026
- Mar 2026
- Mar 2026
Summary
Canyon 30732 crashed after getting excited over a Christmas break around 2013 and spent most of 2014-2017 in bed. He gradually improved to mild, running a small business in 2020-2024, crediting rest, time and possibly low-dose naltrexone. Overwork and stress from late 2024 may have triggered a relapse; by mid-2025 he was bedridden in a dark room, and crashes through 2026 left him unable to occupy himself.
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What they tried
What they credit
Also tried
Vitamin D· HelpedLicorice solid extract· HelpedCold water on feet· HelpedCutting carbs· HelpedXanax· HelpedAtivan· HelpedMetoprolol ER· HelpedElectrolytes (Trioral)· HelpedValacyclovir (Valtrex)· No changeLexapro· No changeStellate ganglion block· No changeIV fluids· No changeBuspirone· WorseLow-Dose Abilify (LDA)· WorseFludrocortisone· WorseRapamycin (sirolimus)· WorseTalk therapy· Not saidExercises (curls, pushups, situps)· Not saidPacing· Not saidDextromethorphan (DXM)· Not saidPotassium· Not said
Their words about each treatment
- Vitamin D · Helped
Vitamin d helped wth mood in the winter.
In context ↗ - Licorice solid extract · Helped
It seemed like liqorice solid extract would make mornings alot easier.
In context ↗ - Valacyclovir (Valtrex) · No change
I've been on 500 Valacyclovir for probably three or four months and I really haven't noticed any effects.
In context ↗ - Lexapro · No change
I had tried both Lexapro and Buspirone a couple years ago at the request of my doctor. ... Neither helped at all
In context ↗ - Buspirone · Worse
I'd take a small dose and get these 'shocks' through all my nerves and some nausea to go with it.
In context ↗ - Talk therapy · Not said
Even talked to a therapist for awhile to reaffirm that I wasn't crazy.
In context ↗ - Cold water on feet · Helped
Cold water on my feet used to be my goto when I had trouble falling asleep
In context ↗ - LDN (Low-Dose Naltrexone) · Helped
I take 3mg/day at night. Seems to help with my threshold as well as when I ran out O started crashing over things I could do on it.
In context ↗ - Cutting carbs · Helped
I had that for about a year initially. Cut a lot of carbs and eventually it went away and could tolerate carbs again.
In context ↗ - Exercises (curls, pushups, situps) · Not said
I've been able to do a few sets of one or two exercises (curls, pushups, or situps, etc.) at a time.
In context ↗ - Pacing · Not said
I've been pacing much better and then just crashing out of nowhere anyways.
In context ↗ - Time and rest · Helped
maybe it's just time and being young.
In context ↗ - Low-Dose Abilify (LDA) · Worse
I tried it twice and crashed after a week or two both times at 0.02mg/day, didn't really do much more, but it did help the sensory sensitivities albeit everything else was worse :/
In context ↗ - Xanax · Helped
I used xanax 0.25-1.0mg for years and recently swapped out for ativan for the less difficult things
In context ↗ - Ativan · Helped
I use xanax for big events and ativan for smaller things like telehealth on a bad day.
In context ↗ - Dextromethorphan (DXM) · Not said
Specialist had me order 30mg tablet (robocough, non-hbr version) to try out. Bumps my HR the rest of the day though.
In context ↗ - Metoprolol ER · Helped
started metoprolol a few months ago that help being up more
In context ↗ - Electrolytes (Trioral) · Helped
I've been doing electrolytes (trioral 2-3x a day in nalgeen water bottles) and started metoprolol a few months ago that help being up more.
In context ↗ - Stellate ganglion block · No change
Had one on one side a few years ago. No difference either way, but they usually would do both sides.
In context ↗ - Fludrocortisone · Worse
It didn't seem to help much at all and the negative effects on cortisol/aldosterone are concerning me that that's what nosedived my health again.
In context ↗ - Potassium · Not said
I started it a week ago at 0.05mg/day with potassium.
In context ↗ - Rapamycin (sirolimus) · Worse
I'm a guy, started at 1mg and worked up to 6mg over a couple months. Seemed like over 3mg I would feel worse, and at 6mg + raising an antiviral I crashed for a few weeks.
In context ↗ - IV fluids · No change
even had an IV that didn't make much difference
In context ↗
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| Christmas break, c. 2013 | crashed after getting excited; three weeks to recover, three months the next timeMine seemed to start after being excited during a drive back home from Christmas break. Three weeks of recovery the first time, then three months the next time.In context ↗ | Not stated | |
| 2014-2017 | in bed most of the time for several yearsI spent most of 2014-2017 in bed, was a living nightmare for awhile...In context ↗ | Severe | |
| 2018 | gradual improvement while resting at homeby 2018 I was well enough that most of my day didn't revolve around CFSIn context ↗ | Moderate | |
| 2020-2024 | mild enough to run a small business, walk the dogs and visit friendsI was mild enough in 2020-2024 to run a little businessIn context ↗ | Mild | Low-dose naltrexone |
| November 2024 | overdoing it and stress tipped the illness back onNovember came and the stress seems to have tipped the illness back onIn context ↗ | Not stated | |
| July 2025 | bedridden in a dark room after relapseby July 2025 I was back to bedridden in a dark roomIn context ↗ | Very severe | |
| April 2026 | some improvement on metoprolol, higher LDN, an antiviral and LDA retrialSome improvements, I don't like to jinx things though.In context ↗ | Severe | |
| June 2026 | lost a year of recovery after moving a laundry basketI was doing better in April, moved a laundry basket, and a couple months later I've basically lost an entire year of recovery effort.In context ↗ | Severe | |
| August 2026 | back to the level where daily things are too much after crashes on fludrocortisone and LDAI'm again at the severity that daily things are too much and I can't keep myself occupied :/In context ↗ | Severe |
Adverse events
- Valtrex / valacyclovir“The first week I didn't feel different, but the last week has been a lot rougher.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I also haven't noticed any side effects aside from crashing much easier” In context ↗ Made symptoms worse
- Low-dose naltrexone“I'd feel off after taking it, but since I took it before bed I probably skipped most side effects.” In context ↗ Side effects
- Buspirone (Buspar)“I'd take a small dose and get these 'shocks' through all my nerves and some nausea to go with it.” In context ↗ Nerve pain
- “Got pushed into treating something I don't even know if I had, crashed, and 8 months later I'm back to 24hrs/day in a darkened room” In context ↗ Made symptoms worse
- Dextromethorphan (DXM)“Bumps my HR the rest of the day though.” In context ↗ Heart rhythm problems
- Low-dose Abilify / aripiprazole“Started LDA a month ago at just a drop (0.02mg) a day, went up to two, then three, crashed” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“I'm already in another bad crash with weakness, lost my appetite, and the general poisoned feeling.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I tried LDA twice and both times my HR jumped more.” In context ↗ Heart rhythm problems
- Fludrocortisone / Florinef“A week in I used my laptop for a few minutes and got dumped into a fluish crash that I've been trying to pace through” In context ↗ Made symptoms worse
- Fludrocortisone / Florinef“I was hungry all the time and kept getting jittery” In context ↗ Side effects
- Rapamycin / sirolimus“Seemed like over 3mg I would feel worse, and at 6mg + raising an antiviral I crashed for a few weeks.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Tried to do a full run on a totalgym we had, took about 4-5 days for the flare up to come down.
In context ↗ - Brain fog
brainfog was better, but both times everything else was worse
In context ↗ - POTS & dysautonomia
today my HR has been spiking when up
In context ↗ - Headaches & migraine
just had another bad crash today after a week of headaches
In context ↗ - Flu-like symptoms
got dumped into a fluish crash
In context ↗ - Light & noise sensitivity
it did help the sensory sensitivities albeit everything else was worse
In context ↗ - Sleep problems
I've been using it for sleep, 40mg, though it's becoming less effective for that.
In context ↗ - Pain & fibromyalgia
I also started having pain/inflammation on the back of my head when laying on my back
In context ↗ - Vision problems
the flashing lights in my eyes have returned
In context ↗ - Anxiety & low mood
During mental breakdowns, before appointments
In context ↗ - Muscle weakness
already in another bad crash with weakness
In context ↗ - Temperature regulation
Cold water on my feet used to be my goto when I had trouble falling asleep, especially if I'm overheating.
In context ↗
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