ME/CFS
Mild → relapsedIll 10 years before improving or writingNeeds ongoing treatment
ME/CFS at their limit after 10-year remission ended, kratom helps pain and energy
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 10 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I have mild/moderate CFS
In context ↗ - At worst: Mild
I am considered mild
In context ↗ - Now: Relapsed
I was 90% recovered. I had 10 decent years like this before ME returned
In context ↗
Read from 121 of their posts and comments; links to the 40 this page draws on
- Mar 2018
- Aug 2017
- Aug 2022
- Aug 2015
- May 2017
- Dec 2016
- Dec 2016
- May 2017
- Nov 2018
- Jul 2017
- Apr 2018
- Sep 2019
- Aug 2019
- Sep 2018
- Jun 2019
- Nov 2019
- Nov 2019
- Feb 2025
- Nov 2019
- Jan 2025
- May 2024
- Aug 2025
- Apr 2018
- Feb 2019
- May 2018
- Aug 2018
- Oct 2024
- Jul 2018
- Aug 2015
- Jan 2017
- May 2018
- Dec 2018
- Nov 2019
- Apr 2025
- Dec 2024
- May 2017
- Oct 2019
- Aug 2017
- Aug 2017
- May 2019
Summary
Plover 50281 became ill with ME/CFS for about three years before going into a 10-year remission at about 90% recovered; the remission ended around 2012, after an injury when they felt close to recovery. They work part-time as a substitute teacher, no more than two days in a row, and say kratom helps pain and energy reasonably well, while ritalin, cannabis and LDN give smaller relief for brain fog, energy or pain. There is no social life or hobbies left, and they are at their limit.
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What they tried
What they credit
Also tried
Cannabis / marijuana· HelpedAvoiding food intolerances / elimination diet· HelpedMelatonin· HelpedTrazodone· HelpedBenadryl· HelpedMenthol creams / tiger balms· HelpedPsychedelics / microdosing· HelpedPolygala tenuifolia· HelpedMeditation· Helpedrantidine· Helped · wore offpropranozole magnesium· HelpedPursed-lip breathing· HelpedWim Hof breathing· HelpedLions mane· HelpedCold immersion· HelpedHuperzine A· HelpedPacing· HelpedTylenol· No changeBaclofen· No changeJogging· WorseAmitriptyline· WorseLyrica· WorseGabapentin / Neurontin· WorseCymbalta· WorseNSAIDs (ibuprofen, aspirin, aleve)· WorseNortriptyline· WorseLow-fat diet· WorseAdrafinil· Not said
Their words about each treatment
- Cannabis / marijuana · Helped
Small doses of marijuana really help me with brain fog. 0.1 - 0.15g in a vaporizer.
In context ↗ - Kratom · Helped
Kratom has been the most help for me. It helps with pain, energy, and dizziness
In context ↗ - Avoiding food intolerances / elimination diet · Helped
I have my IBS controlled by not eating wheat, soy, all spices, broccoli, Bok choi, onions and a few other things
In context ↗ - Exercise bike · Helped
I can ride an exercise bike (with the help of ritalin or another stimulant) for 30min and I do ok.
In context ↗ - Jogging · Worse
anytime I've tried to jog I have ended up bedbound the next day and the PEM continues for a week or more
In context ↗ - Ritalin / Adderall · Helped
I have a good experience with methylphenidate. (I tried Adderall too same effect, but methylphenidate was cheaper so I went with that).
In context ↗ - Amitriptyline · Worse
Amitryptiline made my brain fog a lot worse.
In context ↗ - Lyrica · Worse
Lyrica and gabapentin had the same brain deadening effects.
In context ↗ - Gabapentin / Neurontin · Worse
Lyrica and neurontin - maybe they helped pain but made me dumber than rock. Horrific drugs in my case
In context ↗ - LDN / low dose naltrexone · Helped
I found that LDN helps for about 2 weeks but at that point I always get suicidaly depressed...
In context ↗ - Phenibut · Helped
Phenibut - once every 3 days. Goes well with kratom. These are always my beat/most functional days.
In context ↗ - Melatonin · Helped
Melatonin - almost nightly for sleep
In context ↗ - Trazodone · Helped
Trazodone - half a pill once every 3 days for sleep. Has a mild effect but my sleep is awful so it is appreciated
In context ↗ - Benadryl · Helped
Benadryl - once a week or less for sleep. Not good to take regularly but if I need to sleep (and especially if I'm itchy!) this works wonders.
In context ↗ - Cymbalta · Worse
Cymbalta worked amazing for fatigue for ~48hrs. ... The following 2 weeks though I became sleeping beauty and slept maybe 20hrs each day.
In context ↗ - Tylenol · No change
Tylenol - does nothing
In context ↗ - NSAIDs (ibuprofen, aspirin, aleve) · Worse
NSAIDS (ibuprofen, aspirin, aleve, etc) - no pain relief and worse makes my blood stop clotting
In context ↗ - Baclofen · No change
Baclofen - no pain relief as far as I can tell
In context ↗ - Menthol creams / tiger balms · Helped
Menthol creams/tiger balms - distracts from bodily pain a bit
In context ↗ - Psychedelics / microdosing · Helped
Microdosing psychedelics - helps with maintaining proper health behaviors, regulating emotions and goals in life.
In context ↗ - Polygala tenuifolia · Helped
My depression has been much better and sensory overload has lessened too. I feel like it's made my cognition a step better.
In context ↗ - Meditation · Helped
Meditation has certainly been helpful for me in certain periods.
In context ↗ - Nortriptyline · Worse
I tried Nortriptyline but stopped because it had gluten or some other filler I am intolerant too.
In context ↗ - rantidine · Helped
Be careful with long term use of rantidine. It loses its effectiveness and even worse there's a rebound period after quitting
In context ↗ - propranozole magnesium · Helped
I switched to propranozole magnesium a few years ago and i haven't had to deal with those issues since
In context ↗ - Pursed-lip breathing · Helped
I find that pursing my lips when breathing out (to slow down exhales) works great to counterbalance this.
In context ↗ - Wim Hof breathing · Helped
As for the after lunch lack of energy, that no longer occurs now that i do wim hof breathing for 12mins of my lunch.
In context ↗ - Lions mane · Helped
The past few weeks i have been doing the Wim hof method and taking lions mane. My memory has definitely improved
In context ↗ - Adrafinil · Not said
what I found was adrafinil. It sounds like its still legal and available most places. It metabolizes to modafinil.
In context ↗ - Cold immersion · Helped
it has been really beneficial for me. Mostly mobility and pain wise, but it has allowed gradual improvement
In context ↗ - Huperzine A · Helped
Huperzine A works for this (can also treat some me/cfs symptoms) but it gives worse sleep
In context ↗ - Floor exercise / being on the floor · Helped
Just staying off soft surfaces and being on the floor as much as possible is the most consistent for me and has had the best results
In context ↗ - Pacing · Helped
My "pacing" is to cut things out of my life in order to make my life as small, manageable, and idiot proof as possible.
In context ↗ - Low-fat diet · Worse
previously I was on the "low fat" diet for years which made my weight a constant struggle
In context ↗
Approaches: Exercise and activity · Other drugs and medicines · Stimulants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 4 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 |
|---|---|---|---|
| onset | ME/CFS beganI've had ME for a total of 10 years now.In context ↗ | Not stated | |
| 12 mo | lowest point of the first illness1 year gradually getting worse, maybe a a year at the bottom then 1 year getting betterIn context ↗ | Not stated | |
| 2 y | remission at 90% recovered for 10 yearsit went into remission and I was 90% recovered. I had 10 decent years like this before ME returnedIn context ↗ | Near normal | |
| 2012 | injured while close to recovery; remission endedgot injured when I felt close to recovery then haven't improved since. My remission ended 2012 I thinkIn context ↗ | Not stated | |
| 2015 | took a full-time job and crippling fatigue returnedI started feeling well so I accepted what amounted to a full time job. I was good a couple weeks before the crippling fatigue came backIn context ↗ | Not stated | |
| 2017-01 | rehabbed deconditioning, able to clean the apartment againI've been rehabbing for 2-3 years and just in the last couple months I've been able to start clean out my apartment again.In context ↗ | Mild | Everyday exercise and activity |
| 2018-05 | recovering from a year-long crash, heavily deconditionedI'm just recovering from a year log crash like that.In context ↗ | Mild | |
| 2018-12 | slow progress rehabbing injuries; danced a couple of daysI've been suffering for almost 2 years with injuries->deconditioning but have been slowly making progress. I even danced a couple days this weekIn context ↗ | Mild | Everyday exercise and activity |
| 2019-11 | a bit better after two very bad years, but still no hobbiesAfter a couple of very bad years I am a bit better but even having a regular hobby is still out of my grasp.In context ↗ | Mild | |
| 2025-04 | working at most two days in a row, no social life or hobbiesi have done this by working no more than 2 days in a row ... I have no social life whatsoever and can't even maintain a hobby while working.In context ↗ | Mild |
Adverse events
- Amitriptyline (Elavil)“Amitryptiline made my brain fog a lot worse. ... It may have helped sleep and pain but made my fatigue and cognition worse. Overall negative effect for me.” Made symptoms worse
- Pregabalin (Lyrica), Gabapentin (Neurontin)“Lyrica and neurontin - maybe they helped pain but made me dumber than rock. Horrific drugs in my case” In context ↗ Made symptoms worse
- Low-dose naltrexone“I found that LDN helps for about 2 weeks but at that point I always get suicidaly depressed” In context ↗ Suicidal thoughts or attempt
- Low-dose naltrexone“I also start feeling depressed ... the side effects caused me to quit” Mood or psychiatric effects
- Low-fat diet“what made me gain weight was a "low fat" diet. What this really meant is I would eat a lot of carbs. This in turn made me binge eat.” In context ↗ Other
- “The one "me/cfs" physiotherapist I visited was harmful...” In context ↗ Made symptoms worse
- Duloxetine (Cymbalta)“Cymbalta - turned me into sleeping beauty ... It was so powerful I couldn't sleep at all. The following 2 weeks though I became sleeping beauty and slept maybe 20hrs each day.” Side effects
- “NSAIDS (ibuprofen, aspirin, aleve, etc) - no pain relief and worse makes my blood stop clotting” In context ↗ Other
- Nortriptyline (Pamelor)“I tried Nortriptyline but stopped because it had gluten or some other filler I am intolerant too.” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“when I have a worsening (which can last months to more than a year) it doesn't help in this respect and can make me worse due to not being able to rest” In context ↗ Made symptoms worse
- Ranitidine“It loses its effectiveness ... the acid reflux becomes worse than before using rantidine” In context ↗ Withdrawal problems
- Methylphenidate (Ritalin, Concerta)“When i took ER I just felt overstimulated by the time of the nap” In context ↗ Side effects
- Huperzine A“Huperzine A works for this (can also treat some me/cfs symptoms) but it gives worse sleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
anytime I've tried to jog I have ended up bedbound the next day and the PEM continues for a week or more
In context ↗ - Brain fog
Small doses of marijuana really help me with brain fog.
In context ↗ - POTS & dysautonomia
Ritalin usually helps my POTS but if i overexert because of it, I get PEM which includes worsened POTS.
In context ↗ - Sleep problems
my sleep is awful so it is appreciated
In context ↗ - Pain & fibromyalgia
Kratom really helps with my ME and fibro symptoms (pain, brain fog, etc )
In context ↗ - Gut problems
I still deal with nausea but much less than before
In context ↗ - Light & noise sensitivity
I have similiar problems with sound sensitivity. I wear ear plugs most of the time at home now
In context ↗ - Anxiety & low mood
The depression and anxiety seem almost unavoidable when paired with CFS
In context ↗ - Muscle weakness
I could only get out of bed one way. I couldn't really pick things of the floor. My walking got awful. I would stumble when turning.
In context ↗ - Breathlessness
Yes. I find that pursing my lips when breathing out (to slow down exhales) works great to counterbalance this.
In context ↗
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