Mostly bedbound with ME/CFS for a year, now mild and mostly housebound after ivabradine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
me/cfs is a thing and we have it
In context ↗ - At worst: Severe
I was moderate, mostly bedbound when it started.
In context ↗ - Now: Much better
Now I am mild/mostly housebound, can do something like go shopping (with help) once a week
In context ↗ - Began after: COVID
Than I went on vaccation to Iceland and got Covid there.
In context ↗
Read from 15 of their posts and comments; links to the 12 this page draws on
Summary
Crocus 62056, a German ME/CFS patient, dated their illness to a COVID infection in Iceland in October 2023, after a first vaccine had already left them unable to eat without getting sick. They were mostly bedbound and moderate for about a year before diagnosis in December 2024. Treating POTS with ivabradine plus their IBS, MCAS, gastritis and pain lifted them to mild, mostly housebound, able to shop weekly with help, draw and read again. Moving out of a mouldy flat also helped.
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What they tried
Also tried
Their words about each treatment
- yoga · Helped
I had a really weak back my entire life and with it came daily headaches. I started yoga and it got better and better.
In context ↗ - pacing · Helped
But the PEM is there if my pacing sucks, so I know its ME.
In context ↗ - Ivabradine · Helped
When I got the diagnosis for POTS, got Ivabradine and knew how to manage the illness, I went from moderate to mild and mostly housebound.
In context ↗ - brain retraining · Not said
Right now trying to treat the mild symptoms with brain retraining, lets see how that works.
In context ↗ - meditating · Not said
I am just doing a little meditating, thinking a bit more positive etc, not too much and no program that I have to pay for.
In context ↗ - Garmin Venu 3 and Pacing App · Not said
The garmin reads the pulse live and the battery works a week at least. It also has an alarm.
In context ↗ - moving out of a moldy apartment · Helped
I am now living in an beautiful apartment with the sweetest partner and both really helped me.
In context ↗ - COVID vaccination as treatment · Not said
After the first vaccine, my gastrointestinal tract did not work great. Lost 22 pounds, couldnt eat without getting sick.
In context ↗
Approaches: POTS medication · Mould avoidance · Pacing
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 |
|---|---|---|---|
| October 2023 | COVID in Iceland; never recovered fully afterwardsThan I went on vaccation to Iceland and got Covid there.In context ↗ | Moderate | |
| October 2024 | family trip; could not eat, stand or sitin October 2024 we went to see family for 2 days. It was the worst, I couldnt eat, couldnt stand or sit, slept the whole trip.In context ↗ | Severe | |
| January 2025 | diagnosis in December and a good doctor; began to improveI started to getting better with the diagnosis and a good doctor in January, pending between mild and moderate.In context ↗ | Moderate | Ivabradine |
| March 2025 | treating POTS, IBS and pain; hobbies and meeting friends againwith treating my POTS/IBS/Pain I am mild now and can do some hobbies or meeting friends.In context ↗ | Mild | Ivabradine |
| September 2026 | mild and mostly housebound; weekly shopping with help, drawing, reading, dancing an hourNow I am mild/mostly housebound, can do something like go shopping (with help) once a week and do hobbies like drawing/ reading again.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“After the first vaccine, my gastrointestinal tract did not work great. Lost 22 pounds, couldnt eat without getting sick.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the PEM is there if my pacing sucks, so I know its ME.
In context ↗ - Brain fog
the brainfog was really bad, wasnt able to read or watch tv
In context ↗ - POTS & dysautonomia
My dr found MCAS, POTS, EDS, IBS and chronic Gastritis
In context ↗ - Gut problems
Lost 22 pounds, couldnt eat without getting sick
In context ↗ - Pain & fibromyalgia
I had so much pain in my neck and back, just from sitting.
In context ↗ - Neuropathy & tingling
I had more nerve pain
In context ↗ - Muscle weakness
I have like zero muscles
In context ↗ - Headaches & migraine
with it came daily headaches
In context ↗ - Sleep problems
starts and forces me to stay awake
In context ↗ - Anxiety & low mood
I got really depressed with just surviving under pain everyday
In context ↗ - Heart symptoms & palpitations
My pulse isnt working in an extremsport area
In context ↗
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