ME/CFS
Severe → no benefit
ME/CFS still bedbound in late 2024 after steroids and ivabradine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
Still have PEMs but recover more quickly.
In context ↗
Read from 13 of their posts and comments; links to the 8 this page draws on
Summary
A Reddit user with ME/CFS who had become moderate by mid-2022, having built their own campervan beforehand and able to travel in it, but was still bedbound in December 2024. Steroids helped at first but faded and left them with diabetes type 3 needing insulin; pregabalin slightly eased muscle contractions and pain, and ivabradine was a game changer for heart rate, cutting resting rate from 95 to 65.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Atorvastatin · Helped
Increased a couple of weeks ago my dose of Atorvastatin and Candesartan ... The average HR lowered quite significantly
In context ↗ - ASS · Not said
Take also ASS since I had an STEMI (kind of heart attack) before I was even 40
In context ↗ - Pregabalin · Helped
Since I take Pregabalin 150mg 1-1-1-1 I’m fine at least with that topic ... Reduces pain and improves energy level a bit.
In context ↗ - Ortoton · Helped
Pregabalin and Ortoton for fybro pains somewhat but not very effective
In context ↗ - insulin · Not said
ah and insulin for my Diabetes type 3 ... finally for a long term insulin and a diet
- corticoids / Cortisone · Helped
Was on corticoids for weeks. Helped in the beginning quite well ... But it became more and more useless over the time.
In context ↗ - Ivabradin · Helped a lot
Got my HR down by 15 points and it doesn’t raise so quickly anymore. Some kind of game changer for me.
In context ↗ - antihistamin pills / Fexofenadin Winthrop · Helped a lot
went away with regular antihistamin pills ... Fexofenadin Winthrop 120mg, 1-0-1-0 works fine for me. No relevant symptoms in this regard anymore.
- a diet · Not said
finally for a long term insulin and a diet. Unfortunately it was just one more thing but didn’t solved any other (still bedbound).
In context ↗ - Sirdalud · Helped
Sirdalud 4-0-0-12mg
In context ↗
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022-06-28 | became moderate; travelling in their campervan relieved symptomstraveling with my sprintervan is actually relieving me more than anything elseIn context ↗ | Moderate | |
| 2022-12-31 | average heart rate fell after raising atorvastatin and candesartan doses; PEM recovered more quicklyStill have PEMs but recover more quickly.In context ↗ | Moderate | Candesartan (Atacand) |
| 2023-12-15 | corticoids helped at first, then stopped workingHelped in the beginning quite well, was stronger, a lot less painIn context ↗ | Not stated | Corticosteroid pulses |
| 2024-02-17 | ivabradine brought heart rate down and cut activity spikesGot my HR down by 15 points and it doesn’t raise so quickly anymore.In context ↗ | Not stated | Ivabradine |
| 2024-12-16 | blood sugar swings of 40 to 400 found with a sensor; insulin and diet did not change being bedboundUnfortunately it was just one more thing but didn’t solved any other (still bedbound).In context ↗ | Severe |
Adverse events
- Corticosteroid pulses“I’ve got diabetes most probably from that stuff (type 3!). Too long too high dose.” In context ↗ Other
- Pregabalin (Lyrica)“But especially in the beginning it increases the brain fog.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Still have PEMs but recover more quickly.
In context ↗ - Brain fog
especially in the beginning it increases the brain fog
In context ↗ - Heart symptoms & palpitations
Still have 120-140BPM at physical activities, but not more than that and it comes down quickly.
In context ↗ - Pain & fibromyalgia
Pregabalin and Ortoton for fybro pains somewhat but not very effective
In context ↗ - Sleep problems
It reduced also the restless legs syndrome.
In context ↗