ME/CFS
Moderate → much betterIll 10 years before improving or writingNeeds ongoing treatment
ME/CFS housebound between workdays, now very mild with pacing and therapy
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've had CFS for about 10 years, with a 2 year symptom-free (ish) gap that ended when the pandemic started.
In context ↗ - At worst: Moderate
I was in moderate territory for awhile, too unwell to work much or even cook for myself.
In context ↗ - Now: Much better
I'm very mild these days and very lucky to be able to hold down a full time job.
In context ↗ - Began after: nothing they could name
My onset was different than yours (more gradual, less "classic")
Read from 60 of their posts and comments; links to the 35 this page draws on
Summary
Gradually ill for about a decade after an active life of running and climbing. Going gluten-free lifted them from moderate to near-normal within weeks, but a two-year remission ended with pandemic stress and they were moderate again, working one day a week and housebound between. Pacing, a work-from-home career change and therapy brought them back to very mild while working full time, with PEA helping pain and CoQ10 helping with allergies, though crashes continued.
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What they tried
What they credit
Also tried
PEA· Helped a lotlow-carb/high fat diet· Helpedshort gentle Pilates and body weight workouts· Helpedextra salt and electrolyte drink· Helpedbreathing exercises and guided meditation· Helpedco-q10 / ubiquinol· Helpednaproxen· Helpedmagnesium citrate· HelpedChia seeds· Helpedseverely limiting sugar· Helpednaturopath· Helpedvitamin IV· No changeinfrared sauna· No changeClaritin· WorseLDN· WorseMirena IUD· WorseSSRIs· WorseWellbutrin· Worsestandard fiber supplements· Worselaxatives· Worsecold plunge· WorseCalorie restriction (calorie counting, deficit)· WorsePepcid AC· Not saiddiuretic medication· Not saidinositol (both d-chiro and myo)· Not saidacupuncturist· Not saidmassage therapist· Not saidCetirizine (Zyrtec)· Not said
Their words about each treatment
- low-carb/high fat diet · Helped
At one time, I was on a low-carb/high fat diet for my PCOS and found that actually improved my fatigue while helping to lose a little bit of weight
In context ↗ - short gentle Pilates and body weight workouts · Helped
What does feel good is really short, gentle Pilates workouts and body weight workouts focusing on core strength.
In context ↗ - gluten free diet · Helped a lot
I went from moderate to more or less normal within 2-3 weeks of eliminating all gluten after several years of nothing really helping much
In context ↗ - Claritin · Worse
I suspect that the Claritin in particular was interacting negatively with my cfs/dysautonomia
In context ↗ - Pepcid AC · Not said
I've taken pepcid on and off for many years due to the GERD without issue so I'm fairly certain it's not the cause.
In context ↗ - extra salt and electrolyte drink · Helped
My personal experience is that sodium helps my fatigue a little bit.
In context ↗ - diuretic medication · Not said
When I was taking a diuretic medication, I was actually making my own salt pills
In context ↗ - LDN · Worse
I also tried LDN but found it made me feel weird (I don't remember in what way anymore but it was enough for me to stop taking it).
In context ↗ - PEA · Helped a lot
my naturopath recommended PEA as an alternative and it was very effective for my pain management!
In context ↗ - pacing · Helped
I basically have to limit my exertion to a level that feels stupid because it's so easy, or I will crash.
In context ↗ - lots of rest · Helped
giving myself lots of time to adjust to any new demand on my energy by removing everything else in my schedule that I can and letting myself rest
In context ↗ - low FODMAP diet · Helped
going gluten free, and subsequently doing the low fodmap diet and discovering I don't really tolerate the "o" category
In context ↗ - therapy · Helped
going to therapy and learning how to say no, reducing my feelings of guilt about literally everything
In context ↗ - Mirena IUD · Worse
I had a not great reaction to the Mirena IUD several years ago which has just a tiny bit of progestin in it
In context ↗ - breathing exercises and guided meditation · Helped
I have found that breathing exercises and short guided meditations are calming for my nervous system
In context ↗ - co-q10 / ubiquinol · Helped
After about 2 months, I noticed my allergy symptoms had improved quite a bit
In context ↗ - physiotherapist · Helped
I had a great physiotherapist to help with all the little issues that cropped up
In context ↗ - ADHD medication · Helped
I'm already finding I get more "good" hours in a day (not hours of exertion but just hours where I can exist without needing to be lying down quietly).
In context ↗ - naproxen · Helped
which typically goes away if I take a bunch of naproxen and lie down in the dark at the first inkling of pain
In context ↗ - magnesium citrate · Helped
magnesium citrate always makes a big difference when I start to notice my (non-crash) headache frequency is creeping up
In context ↗ - SSRIs · Worse
SSRIs worsen my fatigue
In context ↗ - Wellbutrin · Worse
I felt as though I was living inside a waking dream and had to stop taking it.
In context ↗ - standard fiber supplements · Worse
Standard fiber supplements trigger my IBS-C
In context ↗ - laxatives · Worse
laxatives make me ill
In context ↗ - Chia seeds · Helped
Chia seeds and magnesium really help my digestive issues
In context ↗ - inositol (both d-chiro and myo) · Not said
I started taking inositol (both d-chiro and myo)
In context ↗ - severely limiting sugar · Helped
I do tend to feel better when I severely limit my sugar
In context ↗ - neurofeedback · Helped
I had a good experience with neurofeedback
In context ↗ - naturopath · Helped
I found it hugely helpful to work with a naturopath who focused on evidence-based treatments.
In context ↗ - acupuncturist · Not said
a naturopath, a massage therapist whose approach is closer to energy healing in terms of gentleness, a physiotherapist, an acupuncturist, a neurofeedback clinician
In context ↗ - massage therapist · Not said
a massage therapist whose approach is closer to energy healing in terms of gentleness
In context ↗ - vitamin IV · No change
prescribed a vitamin IV that I later discovered was a homeopathic tincture
In context ↗ - LoLo birth control · Helped
I've recently started on LoLo birth control and seeing how it goes. On week 7 and having my 1st period on it and can report so far, no crushing period fatigue.
In context ↗ - infrared sauna · No change
I used to have a hard time staying warm and during that period, I enjoyed lying down in an infrared sauna from time to time.
In context ↗ - cold plunge · Worse
I became sick the time I tried a cold plunge-sauna alternating thing.
In context ↗ - Calorie restriction (calorie counting, deficit) · Worse
when I restrict calories even mildly, my fatigue gets significantly worse
In context ↗ - Cetirizine (Zyrtec) · Not said
I have the same zombie-like reaction to it as well
In context ↗
Approaches: CBT & mindset · Diet · Pacing · Physiotherapy and rehab · Radical rest · Sex hormones · Stimulants
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. 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 |
|---|---|---|
| onset | gradual onset while still very active; gave up trail runningliterally one day I skipped my trail run because I was just too tired and then I never stopped being too tiredIn context ↗ | Mild |
| ~2018 | went gluten free and returned to all previous activities for two yearsI went from moderate to more or less normal within 2-3 weeks of eliminating all glutenIn context ↗ | Near normal |
| 2021 | pandemic stress ended the remission; back in moderate territoryI was down to one day a week and being mostly.housebound in between those days to recoverIn context ↗ | Moderate |
| 2022 | changed to a quiet work-from-home desk job, ending the crash cyclechanging careers to one where I can wfh a lot and just huddle up at my computer. This got me out of my crash cycle where I would work for one day and then be in bed for the next 2-3In context ↗ | Mild |
| 2026-05 | unexpected bad crashI am in a somewhat unexpectedly bad crash right nowIn context ↗ | Not stated |
| 2026-09 | back to very mild while working full timeI'm very mild these days and very lucky to be able to hold down a full time jobIn context ↗ | Mild |
Adverse events
- Calorie restriction (calorie counting, deficit)“when I restrict calories even mildly, my fatigue gets significantly worse” In context ↗ Made symptoms worse
- Loratadine (Claritin)“I did this for nearly 3 weeks, during which time my flare worsened and I developed new symptoms” In context ↗ Made symptoms worse
- Loratadine (Claritin)“primarily frequent heart palpitations and a red, burning face” In context ↗ Heart rhythm problems
- Loratadine (Claritin)“primarily frequent heart palpitations and a red, burning face” In context ↗ Side effects
- Loratadine (Claritin)“and counterintuitively, my GERD worsened” In context ↗ Gut side effects
- Loratadine (Claritin)“Claritin does cause me significant fatigue” In context ↗ Side effects
- Cetirizine (Zyrtec)“I have the same zombie-like reaction to it as well” In context ↗ Side effects
- Loratadine (Claritin)“I discovered I don't tolerate antihistamines (I tried several, including a couple of prescriptions)” In context ↗ Side effects
- Salt, electrolytes and fluids“my stomach wasn't a fan” In context ↗ Gut side effects
- Low-dose naltrexone“I didn't tolerate LDN very well so my naturopath recommended PEA as an alternative” In context ↗ Side effects
- IUD (hormonal or copper)“I had a not great reaction to the Mirena IUD several years ago which has just a tiny bit of progestin in it (rapid, significant weight gain, skin issues” In context ↗ Side effects
- Antidepressants (unspecified), Bupropion (Wellbutrin)“I tried it because SSRIs worsen my fatigue.” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“I felt as though I was living inside a waking dream and had to stop taking it.” In context ↗ Side effects
- Antidepressants (unspecified), Bupropion (Wellbutrin)“I've also had it significantly worse during a time when I was withdrawing from an SSNRI, to the point I physically could not keep my eyes open” In context ↗ Withdrawal problems
- “Standard fiber supplements trigger my IBS-C and laxatives make me ill” In context ↗ Gut side effects
- Cryotherapy and cold exposure“I haven't had any long-term benefit from either and I became sick the time I tried a cold plunge-sauna alternating thing.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I overexerted myself and ended up with PEM followed by a crash
In context ↗ - Brain fog
Combine that with brain fog, poor memory
In context ↗ - POTS & dysautonomia
I start with lightheadedness and an overwhelming sense of bodily heaviness
In context ↗ - Mast cell (MCAS) & allergies
a sudden onset of allergy symptoms and flushing type rosacea
In context ↗ - Pain & fibromyalgia
I usually only get the nerve-y body aches when in a crash
In context ↗ - Headaches & migraine
I get a lot of headaches and migraines
In context ↗ - Gut problems
I have IBS, GERD and a family history of celiac
In context ↗ - Heart symptoms & palpitations
I started having heart palpitations about a year ago
In context ↗ - Muscle weakness
I even have to be careful about stretching, especially with how weak I am now
In context ↗ - Neuropathy & tingling
In the past I've had neuropathic burning in my hands and feet
In context ↗ - Anxiety & low mood
Breathing in for 3 counts and out for 4 for several minutes really calms me down when I'm having acute anxiety
In context ↗ - Flu-like symptoms
If the crash persists past the headache then I get the full body aches, flu-like symptoms
In context ↗ - Temperature regulation
I used to have a hard time staying warm
In context ↗
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