ME/CFS
Severe → no benefitIll for 6 yearsNeeds ongoing treatment
Severe ME/CFS, about 95% bedbound, no function restored by fexofenadine or ivabradine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
i am diagnosed with both dysthymia and me/cfs
In context ↗ - At worst: Severe
when I'm still in bed 23 hours a day, my body feels too heavy to move, my heart rate spikes anytime i move
In context ↗ - Now: No benefit
since then i have moved towards severe and im 95% bedbound
In context ↗ - Began after: nothing they could name
my fatigue was chalked up to being part of my PDD
Read from 78 of their posts and comments; links to the 34 this page draws on
Summary
Dusk 79683 fell ill in 2020 and declined over six years from mild to mostly bedbound severe ME/CFS, worsened by staying active while their illness was put down to depression. Fexofenadine eased their allergy-like PEM and resting symptoms and ivabradine normalised their heart rate, but neither restored function, and LDN left them permanently worse. They remained severe and about 95% bedbound, unable to work or care for themselves.
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What they tried
Also tried
prozac / antidepressants· Helpedfexofenadine· Helpedpacing / staying within her energy envelope· Helpedcontinuous combination birth control· Helpedmontelukast· Helpedivabradine· Helpedhigh-sugar food before exertion· HelpedDBT· Helpedoxaloacetate· No changeORS· No changeketotifen· No changefamotidine· No changemultivitamin and magnesium· No changeFinch· Worsemany forms of therapy / intensive psych treatment· Worsemestinon· WorseLDN· Much worse
Their words about each treatment
- prozac / antidepressants · Helped
im on prozac ... it really helps my depression
In context ↗ - oxaloacetate · No change
it didnt do shit for me and its extremely expensive.
In context ↗ - fexofenadine · Helped
i take 2x 360mg fexofenadine daily and its helped quite a bit. im still severe, and it does nothing to prevent PEM, but my symptoms at rest and during PEM are reduced.
In context ↗ - pacing / staying within her energy envelope · Helped
my pacing does work pretty well so im quite happy with my efforts
In context ↗ - ORS · No change
i tried ORS, which did nothing.
In context ↗ - Finch · Worse
i tried finch but it just stressed me out to have notifications
In context ↗ - continuous combination birth control · Helped
i think especially the bc helps me a lot too
In context ↗ - ketotifen · No change
ketotifen did nothing for me
In context ↗ - montelukast · Helped
montelukast and fexofenadine both helped with PEM symptoms, not so much energy or sensitivity.
In context ↗ - LDN · Much worse
ldn made me permanently worse, seems like that wasnt in my head
In context ↗ - many forms of therapy / intensive psych treatment · Worse
i thought it was psychosomatic treatment resistant depression so i did many forms of therapy and kept being active whenever i could.
In context ↗ - ivabradine · Helped
it helps my tachycardia and makes me able to stand for more than 5mins but it did not improve my function
In context ↗ - high-sugar food before exertion · Helped
if i have to do something i tend to eat something with high sugar beforehand and i find that helps me not feel as terrible afterwards.
In context ↗ - famotidine · No change
right now im doing famotidine but I'm not noticing a difference.
In context ↗ - multivitamin and magnesium · No change
i also take a multivitamin and magnesium.
In context ↗ - DBT · Helped
DBT helped me a lot, especially the radical acceptance DBT skill.
In context ↗ - mestinon · Worse
mestinon gave me stomach aches and did nothing else for me
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020 | ME/CFS began; too ill to attend schoolhavent been to school longer than 2 days since 2020In context ↗ | Mild | |
| — | kept active in psychiatric treatment for presumed depression; declined to moderatetreatment pushed me from mild to moderate bordering severeIn context ↗ | Moderate | |
| 2024-12-05 | sank from moderate-severe into severe; indoors two weeksi think im starting to sink from moderate-severe into full on severe. i havent been outside in two weeksIn context ↗ | Severe | |
| 2025-02-03 | antihistamines eased resting and PEM symptoms; still severemy symptoms at rest and during PEM are reduced. at rest theyre pretty much nonexistant nowIn context ↗ | Severe | Fexofenadine (Allegra) |
| 2025-07-21 | meds controlled PEM and baseline symptoms; still in bed 23 hours a dayMy meds alleviate almost all PEM and baseline symptoms, but do nothing for my exhaustion and weaknessIn context ↗ | Severe | Fexofenadine (Allegra) |
| 2026-02-16 | 95% bedbound after years of ordinary activitysince then i have moved towards severe and im 95% bedboundIn context ↗ | Severe | |
| 2026-03-19 | on medication rates about 25 on the Bell scale; resting symptoms mildwith medication I'm about 25 on this scale except that my resting symptoms are quite mildIn context ↗ | Severe | Fexofenadine (Allegra) |
| 2026-10-27 | still severe; LDN left her permanently worseldn made me noticably worse and i never recovered from itIn context ↗ | Severe |
Adverse events
- CBT and psychotherapy“my fatigue was chalked up to being part of my PDD so treatment pushed me from mild to moderate bordering severe” In context ↗ Made symptoms worse
- Low-dose naltrexone“ldn made me noticably worse and i never recovered from it.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I was more tired at first, but now I feel exactly the same.” In context ↗ Side effects
- Low-dose naltrexone“exhaustion and insomnia . also gi problems.” In context ↗ Side effects
- Mestinon / pyridostigmine“mestinon gave me stomach aches and did nothing else for me” In context ↗ Gut side effects
- Fluoxetine (Prozac)“most of it came when i started prozac, though.” In context ↗ Side effects
- Hormonal birth control (unspecified)“ones with a stop week make my symptoms worse” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
now im in PEM maybe knceor twice a month and it only lasts a couple days luckily
In context ↗ - POTS & dysautonomia
i have pretty severe orthostatic symptoms and im more susceptible to physical triggers
In context ↗ - Mast cell (MCAS) & allergies
i used to have allergy like symptoms until i got on antihistamines
In context ↗ - Sleep problems
it does lead me to something turn my sleep schedule reversed
In context ↗ - Pain & fibromyalgia
i am near asymptomatic when it comes to pain and flu like aymptoms both baseline and during pem due to lots of medication
In context ↗ - Headaches & migraine
it was my main symptom until i got on fexofenadine
In context ↗ - Heart symptoms & palpitations
it helps my tachycardia and makes me able to stand for more than 5mins
In context ↗ - Muscle weakness
my body feels too heavy to move
In context ↗ - Brain fog
my physical cfs symptoms are severe while my mental symptoms are mild
In context ↗ - Anxiety & low mood
now I'm severe and my depression is coming back
In context ↗ - Temperature regulation
my temperature sensitivity is pretty bad and a change in temperature like that throws me for a loop
In context ↗