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ME/CFS Somewhat betterIll 3 years before improving or writing

ME/CFS with PEM, bedbound, now somewhat better after stopping inhaler

Meadow 73825 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Not stated
Ill before improving or writing
3 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSI have CFS and pots. In context ↗
  • Now: Somewhat betterI started ivabradine which took me from severe to more moderate. In context ↗
  • Began after: COVIDFirst of all, I'm coming from the covid train, in case it feels relevant.
Read from 271 of their posts and comments; links to the 55 this page draws on

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Summary

After long COVID they developed ME/CFS symptoms with PEM, suspected POTS/dysautonomia and asthma, deteriorating over a year from work to sick leave. An asthma glucocorticoid inhaler left them bedbound until they stopped it, after which they improved within days to couchbound/housebound. They used a mobility chair indoors and a push wheelchair outside with someone, but were not wheelchair full time.

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What they tried

What they credit

ivabradine· Helped a lot · mainpropranolol· Helped a lot · mainpacing· Helped · mainradical rest· Helped · mainiron infusion· Helpedketotifen· Helped

Also tried

coffee/caffeine· Helpedsleeping with legs elevated· HelpedGarmin Vivoactive 5· Helpedmelatonin· Helpedcompression stockings· Helpedsalt water· HelpedXanax· Helpedtriptans· Helpedanti histamine· HelpedCBT / acceptance and commitment therapy· HelpedCorona vaccination/booster· No changeibuprofen· No changeflu shot· Worse40 min up / 20 min down schedule· Worseiron tablets· Worsemultivitamin· Worseglucocorticoid inhaler (Alvesco, ciclesonide)· Much worsezolpidem· Not saidvitamin D· Not saidMorphine· Not said
Their words about each treatment
  • flu shot · WorseI got mildly sick from my flu shot and barely any effect from the Corona vaccination. In context ↗
  • Corona vaccination/booster · No changeI got mine a month ago and was afraid it would negatively influence me, but I had zero effect (except for maybe 4 days of being a bit off) In context ↗
  • coffee/caffeine · HelpedCaffeine is a vasoconstrictor and helps me with POTS management in the morning, I limit myself to one cup per day In context ↗
  • pacing · Helpedreally only resting and pacing has helped In context ↗
  • radical rest · HelpedRadical resting, or listening to boring YouTube (with eyes closed) was the only thing I felt like was doing anything. In context ↗
  • sleeping with legs elevated · HelpedI put a pillow under my matrass and my legs hurt less and I feel less pressure on my head. In context ↗
  • zolpidem · Not saidI am taking since April (max maybe max once a week bc addictive) zolpidemtart 10 mg. In context ↗
  • glucocorticoid inhaler (Alvesco, ciclesonide) · Much worsemy doctor prescribed me a glucocorticoid (alvesco, ciclesonide) and it had the **worst reaction** in me. In context ↗
  • Garmin Vivoactive 5 · HelpedI can appreciate the body battery score that the Garmin gives me, I feel it visualizes nicely what takes a lot of energy In context ↗
  • melatonin · HelpedI've started with 3mg of melatonin 2h before bedtime and it seems to work very well. In context ↗
  • compression stockings · HelpedI got medically prescribed (and measured to fit my legs) compression stockings (till the groin) and find that they help with pain relief. In context ↗
  • salt water · HelpedI started mixing 5gr of salt to 1.5 litre of water, just to see what happened. I already notice benefits from it (less headaches). In context ↗
  • 40 min up / 20 min down schedule · WorseI did a similar schedule (40 min "up"/ 20 min down), bc my OT recommended me to do it. ... It was too much for me, and I'm worse then when I started. In context ↗
  • ivabradine · Helped a lotafter I asked, she agreed to trial ivabradine. I'm happy to say that it doesn't cut my resting heart rate that much further down, but definitely takes the peak out of the maximum. In context ↗
  • ibuprofen · No changeNothing relieved the pain, not even higher doses of ibuprofen. In context ↗
  • Xanax · HelpedI took Xanax in the summer for extreme stress. It worked well for me, and made me sleep better. In context ↗
  • triptans · HelpedI've used a triptan for 12 days consecutively last month bc of migraines during PEM ... I feel noticeably better while on them In context ↗
  • iron tablets · WorseI've tried Ferro fumarate 200 mg first, it seemed like they gave me migraines. Then I switched to ferrosulphate (delayed dose), which still makes me crash. In context ↗
  • multivitamin · WorseI took the same multi vitamin until I started puking them out religiously 4 weeks after pneumonia In context ↗
  • vitamin D · Not saidOnly vit D, it's winter where I live now and I don't go outside generally. In context ↗
  • propranolol · Helped a lotstarted with new meds last week and it seems to go surprisingly well (propranolol). My stress levels are lower than ever. In context ↗
  • iron infusion · HelpedI got an iron infusion, it made me feel more human again. In context ↗
  • ketotifen · HelpedI started with .5 mg and didn't really notice anything. After 2 days I took 1 mg by accident and did that now for a few weeks. My body Battery (garmin) looks way better In context ↗
  • anti histamine · Helpedgot a calmer heart rate and overall less air hunger + less nausea/bloatyneds etc. from ketitofen + anti histamine. In context ↗
  • CBT / acceptance and commitment therapy · HelpedI've been through acceptance and commitment therapy and feel like it was helpful. In context ↗
  • Morphine · Not saidI get super nauseated from morphine In context ↗

Approaches: POTS medication · Antihistamines & MCAS · Beta-blockers · Pacing · Radical rest · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y

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
WhenWhat happenedWhere they wereAfter
late 2023double pneumonia (suspected COVID), then long COVIDI went back to the gym like 4 weeks after a double pneumonia bc that's just how I was raised (badly). In context ↗Mild
November 2024still deteriorating after a year of illness; three-week flareAfter a year of being sick, I'm still deteriorating every week. In context ↗Severe
January 2025close to bed bound after months of declineI'm close to bed bound, and she now started talking about an electric wheelchair. In context ↗Severe
February 2025glucocorticoid asthma inhaler caused rolling PEM; bed bound, starting pressure soreI felt the absolute worst, rolling PEM, bed bound, days away of calling the insurance to arrange a nurse for sponge baths In context ↗Very severe
February 2025stopped the inhaler; back on the couch within two daysAfter 5 weeks I stopped, and within 2 days I was able to lay on the couch in the living room again In context ↗Severe
April 2025ivabradine; sitting became more comfortableI still can't stand really, but sitting has become a lot more comfortable. In context ↗SevereIvabradine
December 2025iron tablets brought bad crashesI'm on iron tablets since six weeks now, and seen to be having really bad crashes. In context ↗Severe
January 2026propranolol added; stress levels lower than everI started with new meds last week and it seems to go surprisingly well (propranolol). My stress levels are lower than ever. In context ↗SeverePropranolol (Inderal)
March 2026ivabradine took her from severe to more moderateI started ivabradine which took me from severe to more moderate. In context ↗ModerateIvabradine
October 2026still wheelchair-dependent full time, alone much of the day; migraines flaring againI am moderate bordering on severe, live alone with some support but not enough, and use my wheelchair full time. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
  • Post-exertional malaisewalking VERY minimal distances triggers my PEM In context ↗
  • Brain fogLuckily brain fog will keep it interesting In context ↗
  • POTS & dysautonomiaI have CFS and pots. In context ↗
  • Mast cell (MCAS) & allergiesI actually think it's MCAS related. I'm not officially diagnosed with it, but I'm seeing more and more signs. In context ↗
  • Sleep problemsToday is the first day I didn't sleep terrible In context ↗
  • Pain & fibromyalgiaI had excruciating pain in my legs and nothing helped In context ↗
  • Headaches & migraineThey went to the background a bit (4 attacks a month) after managing my pots better. But now I don't know what happened. In context ↗
  • Gut problemsTurning around in bed already would give me nausea and headaches. In context ↗
  • Light & noise sensitivitythe small light can already give me a headache and a raised heartbeat In context ↗
  • BreathlessnessIt feels difficult to relax when I'm basically always panting. In context ↗
  • Heart symptoms & palpitationsI have massive heart palpitations (basically throughout the day) In context ↗
  • Muscle weaknessI became completely bedbound and have lost muscle mass. In context ↗
  • Anxiety & low moodI guess the short version is lots of emotions: scared for the future In context ↗
  • Flu-like symptomsSore throat is however one of my PEM symptoms In context ↗
  • Temperature regulationI'm indeed cold together with my chills, and then I'll break out in sweat and heat. In context ↗

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