ME/CFS
RecoveredIll 4.5 years before improving or writingNeeds ongoing treatment
Couchbound with ME/CFS, now recovered after Prozac and meditation
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 4.5 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
I suffered from moderate to severe Cfs for four and a half years from 2016 to 2020.
In context ↗ - Now: Recovered
Today I am a school bus driver and fully recovered.
In context ↗ - Began after: stress or burnout
I had burned out from overwork and over stress.
Read from 61 of their posts and comments; links to the 37 this page draws on
Summary
A Canadian carpenter fell ill in autumn 2015 after overwork and family stress, and was couchbound by 2018, needing his parents to feed him and managing 100-150 steps a day. After Prozac eased him out of fight-or-flight in April 2020, he credits meditation, a paleo diet, mercury filling removal and supplements, rebuilding to 8,000-10,000 steps. By 2023 he called himself fully recovered and was driving a school bus, in remission while avoiding stress.
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What they tried
What they credit
turmeric curcumin· Helped a lotATP fuel· Helped a lot · mainpacing· Helped a lotProzac· Helped a lotpaleo diet· Helped a lotmercury amalgam filling removal· Helped a lotDr Joe Dispenza meditations· Helped a lot · mainyoga/stretching· Helped a lotgradual walking/steps/push-ups· Helped a lotHeadspace/mindfulness meditation· Helpedcelery juice· HelpedWim Hof breathing· Helped
Also tried
5HTP· Helpedginkgo biloba· Helpedclonipin· Helpedsleep mask/ear plugs/fan· Helpedvalerian· No changeGABA· No changeL-theanine· No changemelatonin· No changeAdvil and Aleve· No changeketo diet· No changeMyers IVs· No changeB12 injections· No changeCalm app· No changeheat· WorseCipralex/Lexapro· WorseNortriptyline· Worseashwagandha· WorseLDN· Worseregular sunglasses· WorseDiphenhydramine (Benadryl)· WorseAtivan· Much worsezopiclone (Ambien)· Much worseZquil (diphenhydramine)· Much worseSleepeze· Not saidNatural Calm· Not saidDan Neuffer ANS Rewire· Not saidCoQ10· Not saidNADH· Not said
Their words about each treatment
- Ativan · Much worse
While on these medications I had no energy and became much sicker.
In context ↗ - zopiclone (Ambien) · Much worse
The drug also destroyed whatever energy I had leaving me mostly bedridden.
In context ↗ - valerian · No change
valerian, gaba, lthelene, melatonin, 5htp
In context ↗ - 5HTP · Helped
I take approx 500mg per day. It cuts out the worst of the depression for me. It’s a godsend.
In context ↗ - Sleepeze · Not said
I take sleepeze or zquill.
In context ↗ - Zquil (diphenhydramine) · Much worse
I started taking zquil regularly. Since then all my energy has gone.
In context ↗ - Headspace/mindfulness meditation · Helped
I am on a 172 day streak on headspace.
In context ↗ - heat · Worse
I tried heat but only made it worse.
In context ↗ - Advil and Aleve · No change
Advil and aleeve did nothing either.
In context ↗ - Cipralex/Lexapro · Worse
my old ssri cipralex caused terrible fatigue.
In context ↗ - Nortriptyline · Worse
I don’t think this med is helping me. I’m having manic fits right now
In context ↗ - keto diet · No change
Hasn’t made a difference unfortunately.
In context ↗ - ginkgo biloba · Helped
The only thing that works for me to help just a tiny bit is ginkgo Biloba.
In context ↗ - Myers IVs · No change
helpful with Myers IVs and B12 injections. Neither have given me any extra energy whatsoever.
In context ↗ - Natural Calm · Not said
I use natural calm half a glass at bedtime.
In context ↗ - ashwagandha · Worse
ashwanganda to stimulate me at bedtime
In context ↗ - clonipin · Helped
taking clonipin which effectively disarms or inhibits the cns is seemingly the only thing effective.
In context ↗ - turmeric curcumin · Helped a lot
after taking two capsules a day for one month my brainfog has been cut by 75%.
In context ↗ - ATP fuel · Helped a lot
I ran out last week and my energy dropped like 40%.
In context ↗ - pacing · Helped a lot
Pacing of course is my #1 strategy.
In context ↗ - Dan Neuffer ANS Rewire · Not said
Dan Neuffers ANS Rewire program helped a lot.
In context ↗ - CoQ10 · Not said
Take CoQ10 And nadh in the Morning.
In context ↗ - Prozac · Helped a lot
a small dose of liquid Prozac prescribed thru my doctor was sufficient. After a few days I could fall asleep properly and and it saved me from insanity.
In context ↗ - LDN · Worse
LDN made me sicker unfortunately.
In context ↗ - paleo diet · Helped a lot
I ate paleo diet. No alcohol but coffee was fine.
In context ↗ - celery juice · Helped
I began drinking celery juice. This cleaned me out had me going poop a lot but I started feeling revitalized.
In context ↗ - mercury amalgam filling removal · Helped a lot
I had all my mercury amalgam fillings removed. That took 6months and I noticed after brushing in I longer got sick.
In context ↗ - Wim Hof breathing · Helped
I felt stronger and had more energy after doing them every day for two weeks.
In context ↗ - Dr Joe Dispenza meditations · Helped a lot
After three months of doing the meditations, I noticed I was becoming calmer and calmer. My sleep began to improve.
In context ↗ - Calm app · No change
These were good, but they did not put me in a healing state.
In context ↗ - yoga/stretching · Helped a lot
Yoga is amazing at circulating blood the body.
In context ↗ - gradual walking/steps/push-ups · Helped a lot
I could go from 150 steps a day to 300. Every month I focused on more steps each week.
In context ↗ - sleep mask/ear plugs/fan · Helped
I wear a sleep mask, ear plugs, and have a fan going thru the night.
In context ↗ - regular sunglasses · Worse
The problem is when I put them on, my eyes get irritated focusing through the dark lenses
In context ↗ - Diphenhydramine (Benadryl) · Worse
so I started taking zquil regularly. Since then all my energy has gone.
In context ↗
Approaches: SSRIs · Diet · Mind-body practices · Pacing · Physiotherapy and rehab · Supplements · Surgery & structural
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 |
|---|---|---|---|
| fall 2015 | Fatigue began on the job as a contractorMine started in the fall of 2015. I had a physical job as a contractor.In context ↗ | Mild | |
| spring 2016 | Ran out of energy at work and stopped workingOne day I went to work and at noon I no longer had any energy to go on.In context ↗ | Moderate | |
| mid 2016 | On Ativan and zopiclone, much sicker in bedWhile on these medications I had no energy and became much sicker.In context ↗ | Severe | |
| 2017 | Energy returned as he tapered off the sedativesAs my tapers ended, my energy increased in accordance.In context ↗ | Moderate | |
| December 2017 | Crashed after three hours building a cabinetThree hours In I crashed hard. A month of mostly bed now.In context ↗ | Severe | |
| February 2018 | Became housebound and couchbound, crashing every other dayI am housebound since February. A good day involves struggling out of bedIn context ↗ | Severe | |
| September 2018 | Bedridden, antidepressants made crashes much worseI am bedridden with cfs at the momentIn context ↗ | Severe | |
| January 2020 | Couchbound at his parents' home, unable to feed himselfI am still only 10% functional and can do 100 steps per day only or I will crash.In context ↗ | Severe | |
| November 2019 | Brain fog cut by turmeric and ATP Fuel but still couchboundmy brainfog has been cut by 75%In context ↗ | Severe | |
| April 2020 | Dropped out of fight or flight with Prozac and a calmer homeMy relationship improved with my son and my body along with Prozac, I dropped out of fight or flight.In context ↗ | Severe | |
| late 2020 | After three months of meditation, steps rebuilt from 150 to 3000 a dayBy 8 months I was walking 3000 steps a day.In context ↗ | Moderate | Meditation, yoga, breathwork |
| 2021 | Back working part time and lifting heavy objectsI am Back working part time, hopefully headed for full time.In context ↗ | Mild | |
| December 2023 | Fully recovered, working as a school bus driverToday I am a school bus driver and fully recovered.In context ↗ | Recovered |
Adverse events
- Lorazepam (Ativan)“I had terrible symptoms withdrawling from tolerance withdrawal from Ativan. Worst 6 mths of my life thought I was gonna die for sure” In context ↗ Withdrawal problems
- “Last year I was addicted and dependant on zopliclone and suffered 3 months of terrible withdrawals.” In context ↗ Withdrawal problems
- “The drug also destroyed whatever energy I had leaving me mostly bedridden.” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“While on these medications I had no energy and became much sicker.” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“While on these medications I had no energy and became much sicker.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“I find on cipralex aka Lexapro at 20mg very toxic to me. ... still it makes me fatigued and makes my PEM much much worse” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“When I dropped the dose from 20mg to 15 mg, the nausea and vomiting on bad days stopped.” In context ↗ Gut side effects
- Escitalopram (Lexapro)“I came off lexapro and when I was down to 5mg I started freaking out, mania, panic.” In context ↗ Withdrawal problems
- Nortriptyline (Pamelor)“I'm having manic fits right now and it took an Ativan to calm me down.” In context ↗ Mood or psychiatric effects
- Escitalopram (Lexapro), Nortriptyline (Pamelor), Fluoxetine (Prozac)“All of which have helped me mentally, but made my fatigue and the severity of my crashes much much worse.” In context ↗ Made symptoms worse
- Escitalopram (Lexapro), Nortriptyline (Pamelor), Fluoxetine (Prozac)“By the second or third day of taking an antidepressant, I would eventually wake up crashed and vomiting.” In context ↗ Made symptoms worse
- Nortriptyline (Pamelor)“It's started bad since comming off my nortriptylene. But ya I'm having like serious ocd and panic over this shit.” In context ↗ Withdrawal problems
- Diphenhydramine (Benadryl)“so I started taking zquil regularly. Since then all my energy has gone.” In context ↗ Made symptoms worse
- Ashwagandha“I found in the past ashwanganda to stimulate me at bedtime” In context ↗ Side effects
- CoQ10 / ubiquinol“Take CoQ10 And nadh in the Morning. They will cause insomnia at least they did in me.” In context ↗ Insomnia from treatment
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“Take CoQ10 And nadh in the Morning. They will cause insomnia at least they did in me.” In context ↗ Insomnia from treatment
- Lorazepam (Ativan), Clonazepam (Klonopin)“If you thinks cfs is rough you don’t wanna know what benzo addiction and withdrawl is like. Almost killed my self” In context ↗ Suicidal thoughts or attempt
- Fluoxetine (Prozac)“The next day, was just like a Hangover!” In context ↗ Side effects
- Low-dose naltrexone“LDN made me sicker unfortunately.” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“I warn maybe just do one round to start as it also tired me out.” In context ↗ Side effects
- Fluoxetine (Prozac)“the only downside at this dose is it's hard to loose weight and sometimes I feel drowsy in the afternoon” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodGut problemsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Even walking to the bathroom more than once a day triggered PEM.
In context ↗ - POTS & dysautonomia
I was diagnosed with pots last Tuesday actually.
In context ↗ - Sleep problems
to brutal insomnia of days at a time when I do
In context ↗ - Muscle weakness
my arms are weak and burning
In context ↗ - Neuropathy & tingling
Even My feet used to tingle and were always ice cold.
In context ↗ - Light & noise sensitivity
I have sound sensitivity and have ear plugs in all day.
In context ↗ - Vision problems
my vision isn’t great and I get floaters in my eyes.
In context ↗ - Temperature regulation
I would overheat and have immediate crashes from a hot shower.
In context ↗ - Gut problems
throw up from fatigue and nausea
In context ↗ - Anxiety & low mood
With severe CF I have major depression being trapped on a couch 12 hrs a day
In context ↗
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