ME/CFS
Moderate → relapsedNeeds ongoing treatment
Confined to bed before periods, ME/CFS; NAC and modafinil lifted brain fog, then relapse
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- several years
- Last post
- Aug 2020
In their words
- Condition: ME/CFS
the CFS is still real, I can't fly
In context ↗ - At worst: Moderate
Week before my period, no energy whatsoever and zero mental energy and just confined to the bed
In context ↗ - Now: Relapsed
It's not effective anymore though and I'm on my last strip and taking a break from it cause I'm more moda zombie than moda workie
In context ↗
Read from 16 of their posts and comments; links to the 16 this page draws on
Summary
A woman in Wales, ill with CFS for years, spent the week before each period confined to bed, working as little as a couple of hours a week. The contraceptive pill and fluoxetine helped her PMDD but not her energy, while cutting gluten helped her energy. Coming off the pill and starting NAC, with modafinil, lifted her brain fog in February 2020; after a seven-day good run she crashed, and later relapsed after moving to a damp flat. By August modafinil no longer worked.
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What they tried
What they credit
Also tried
fluoxetine· Helpedl-theanine· Helpedcomplete multi-vitamin· HelpedBCAAs· HelpedBenadryl / cetirizine· HelpedBenadryl / cetirizine· Helpedmagnesium· Helpedtopical gel solution· Helpedair purifier· Helpedcontraceptive pill (lucette)· WorseHormonal birth control (unspecified)· WorsePregnenolone· Not saidmelatonin· Not saidbaking soda· Not said
Their words about each treatment
- Pregnenolone · Not said
I did try it years ago, and swore off it cause I had no idea what the actual long term impacts of it were, and I was in a bad way.
In context ↗ - fluoxetine · Helped
Fluoxetine really helped me with my sleep. I didn't realise until after I stopped and my insomnia came back.
In context ↗ - modafinil / armodafinil · Helped
modaf got me through my MSc because it got me past that mental and fatigue block. It's not effective anymore though
In context ↗ - contraceptive pill (lucette) · Worse
While I was taking the pill I was having continous viral outbreaks. I'm theorizing that the pill reduced my immune system an cortisol levels and seriously effected my mood.
In context ↗ - gluten-free diet · Helped
cutting gluten out really helps my energy levels in general
In context ↗ - NAC · Helped
I take NAC 3x daily for inflammation. My symptoms creep back when I don't take it, I wouldn't consider living without taking it.
In context ↗ - DMAE · Helped
there's a definite 'lift' some 30+min afterwards:difference for me between non-function and function
In context ↗ - l-theanine · Helped
I have it my breakfast smoothies, which also includes l-theanine, and a complete multi-vitamin, and BCAAs.
In context ↗ - Benadryl / cetirizine · Helped
I take it in the evening with melatonin to help sleep. ... I just take cetirizine for the itchiness nowadays that seems to help.
- melatonin · Not said
I take it in the evening with melatonin to help sleep.
In context ↗ - magnesium · Helped
I use magnesium in the evening, it helps me sleep but the effects are subtle.
In context ↗ - topical gel solution · Helped
I use a topical gel solution which I find extremely effective for localised muscle aches.
In context ↗ - NAD+ · Helped
I also take 3x: 30mg NAD+, CoQ10 and 700mg NAC. ... I do find if I stop taking my stack my energy slides
In context ↗ - CoQ10 · Helped
I also take 3x: 30mg NAD+, CoQ10 and 700mg NAC. My CoQ10 has D-ribose as well. ... if I stop taking my stack my energy slides
In context ↗ - multivits · Helped
Other staples are multivits, fatty acids, and whey protein for amino acids. ... if I stop taking my stack my energy slides
In context ↗ - baking soda · Not said
And baking soda sometimes for the itchiness
In context ↗ - air purifier · Helped
I bought an air purifier (mostly for dust as my flat is v.small), and my faint respiratory issues where much clearer.
In context ↗ - Hormonal birth control (unspecified) · Worse
While I was taking the pill I was having continous viral outbreaks.
In context ↗
Approaches: Diet · Stimulants · Supplements
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. 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 |
|---|---|---|---|
| years before 2019 | CFS first triggeredwhen my CFS first triggered years ago, we had a cat in the house and at one point had a flea problemIn context ↗ | Not stated | |
| 2019-07-10 | premenstrual week with no energy, confined to bedWeek before my period, no energy whatsoever and zero mental energy and just confined to the bed.In context ↗ | Moderate | |
| 2020-02-24 | came off the contraceptive pill; NAC and modafinil; fog lifted, cognition backsince coming off the pill, the fatigue still exists, however now I am able to manage it with modafinil, the fog has lifted and I have my cognition backIn context ↗ | Mild | NAC (N-acetylcysteine) |
| 2020-02-26 | seven days of cognitive clarity, productive hours up to 5.5managed my ADHD and fatigue enough to bring my productive working hours from 2 hours a week ago to 5.5 yesterdayIn context ↗ | Mild | |
| 2020-02-26 | crashed the next day, had to lie down at middayShould've expected that I'd have a crash today. Getting to the office and working? Nah, I gotta lay down at midday before trying to leave the house.In context ↗ | Moderate | |
| 2020-05-29 | relapse coinciding with move to a small, humid flatMy most recent relapse coincided exactly with the move to my current flat, which is small has a slightly humid environmentIn context ↗ | Moderate | |
| 2020-08-04 | working from home as a postgrad, sleeping about 5am, modafinil no longer effectiveIt's not effective anymore though and I'm on my last strip and taking a break from it cause I'm more moda zombie than moda workieIn context ↗ | Moderate |
Adverse events
- Modafinil / armodafinil“I've been able to treat my fatigue with modafinil in the past, but during this time even it couldn't cut through the fog, most of the time it made my symptoms worse.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“It usually pushes my sleeptime later and later” In context ↗ Insomnia from treatment
- Hormonal birth control (unspecified)“While I was taking the pill I was having continous viral outbreaks.” In context ↗ Made symptoms worse
- Hormonal birth control (unspecified)“I'm theorizing that the pill reduced my immune system an cortisol levels and seriously effected my mood.” In context ↗ Mood or psychiatric effects
- Hormonal birth control (unspecified)“But in my ADHD-ass case think it's definitely a contributor to brain fog.” In context ↗ Made symptoms worse
- Fluoxetine (Prozac)“The first 6 weeks on prozac are pretty horrid ... my senses were dulled, food didn't taste as good” In context ↗ Side effects
- Fluoxetine (Prozac)“And it is hell to stop taking it, if you don't how you feel on it you can't just stop taking it, you've got to taper and it can take months.” In context ↗ Withdrawal problems
- Diphenhydramine (Benadryl)“I find if I take it I have vision changes the next day and can't think straight.” In context ↗ Side effects
- Diphenhydramine (Benadryl)“that stuff makes me so so groggy” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
Should've expected that I'd have a crash today.
In context ↗ - Brain fog
the fog has lifted and I have my cognition back
In context ↗ - Sleep problems
I get to sleep about 5am most days
In context ↗ - Pain & fibromyalgia
I tend to have aching muscles if I've accidentally pushed too hard
In context ↗ - Mast cell (MCAS) & allergies
I stopped anti-histamines for a whole week and had a deep itching on my arms and legs
In context ↗ - Vision problems
if I take it I have vision changes the next day and can't think straight
In context ↗ - Anxiety & low mood
just this insane painful grief and massive hole in my being
In context ↗
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