99.9% bedbound with ME/CFS, now somewhat better with a beta blocker and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2025
In their words
- Condition: ME/CFS
I’ve had CFS/ME for 12ish years since a mono infection.
In context ↗ - At worst: Severe
I am bedbound 23.5 hours a day. Can’t walk down the stairs in my house or really anything.
In context ↗ - Now: Somewhat better
Before I was only able to take about 400 steps a day and now I can do 1000 most days , but if I get close to 2000 I crash.
In context ↗ - Began after: glandular fever or EBV
This all began after I had mono 13 years ago when I was 17.
Read from 33 of their posts and comments; links to the 20 this page draws on
Summary
Mild ME/CFS since mono at 17 in 2013, with remissions in two pregnancies and worsening after COVID, until a February 2025 crash left her 99.9% bedbound and unable to tolerate light, noise or conversation. A beta blocker from late March lowered her heart rate, and she credited it, with pacing and rest, for beginning to pull out. By July she could take 1,000 steps most days but would crash near 2,000; stopping the beta blocker to try ivabradine briefly set her back, and she remained mostly bedbound.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- propranolol · Worse
I started it yesterday and had the most mild one or two out of 10 itching and then it happened again today oddly.
In context ↗ - metoprolol · Helped
I think a lot of it for me has been the beta blocker. Before I was only able to take about 400 steps a day and now I can do 1000 most days
In context ↗ - Florinef · Not said
They started me on Florinef this week since BP was a little low, then adding Propranolol next week.
In context ↗ - LDN · No change
I don't really see much improvement on LDN
In context ↗ - ivabradine · No change
try ivabradine (which didn't work for me) for four days
In context ↗ - guanfacine · Not said
I started it yesterday, I didn’t notice any difference so far.
In context ↗ - Valtrex · Not said
I just started 500 MG ... feeling a little bit of mild flu like sensations after my first dose of 500 MG
In context ↗ - aggressive rest / bedrest · Worse
I took the advice of aggressive rest and started bedrest six or seven weeks ago and I feel like I have majorly gone downhill, my POTS is now severe
In context ↗ - pacing · Helped
I think I may be very slowly improving now from the help of meds, staying in bed 23.5 hrs a day and pacing.
In context ↗ - IV fluids · Helped
Last Friday I got an IV because my POTS has gotten much more severe since being stuck in bed ... the IV helped and I felt so good
In context ↗ - Unisom · Helped
Unisom helps me a bit.
In context ↗ - supplements · Not said
I am taking every supplement you could pretty much imagine.
In context ↗
Approaches: Beta-blockers · Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2013 | ME/CFS after mono at age 17, moderate at firstI had mono when I was 17 which is when we suspect I developed CFS/ME. ... It was first moderate for about a year or so. |
| about a year after onset | settled into mild ME/CFS for a decadeThen went mild. ... Even holding a part-time job was tough at times. |
| 2021-2022 | mild COVID; health went downhill, nerve issues appearedI had a mild Covid infection that made my health go really downhill.In context ↗ |
| 2022-2023 | CFS went into remission during pregnancyI think I even went into remission twice with pregnancy between 2021 to 2023In context ↗ |
| second half of 2024 | CFS came back after birth; rolling PEM to mild/moderateAfter giving birth everything came back again and towards the second half of 2024 I suspect I got into rolling PEM that brought me from mild to mild/moderate.In context ↗ |
| February 2025 | crash into rolling PEM, 99.9% bedboundI was mild/mod for a decade and then I randomly became very severe and 99.9% bedbound 4 months ago.In context ↗ |
| April-May 2025 | slowly improving on meds, bedrest and pacing; still mostly bedboundI think the first thing that started to help pull me from it on the road to healing was starting a beta blockerIn context ↗ |
| 2025-07-12 | crashed after stopping beta blocker for a four-day ivabradine trialI had to stop my beta blocker earlier this week to try ivabradine (which didn’t work for me) for four days and it made me crash and go back to the place I was months ago.In context ↗ |
| July 2025 | back on beta blocker; about 1,000 steps a day, crashes near 2,000Before I was only able to take about 400 steps a day and now I can do 1000 most days , but if I get close to 2000 I crash.In context ↗ |
Adverse events
- Radical rest“I took the advice of aggressive rest and started bedrest six or seven weeks ago and I feel like I have majorly gone downhill, my POTS is now severe and before this was mild.” In context ↗ Made symptoms worse
- Propranolol (Inderal)“I started it yesterday and had the most mild one or two out of 10 itching and then it happened again today oddly.” In context ↗ Side effects
- Metoprolol (Lopressor, Toprol)“I am actually trying to get off of Metropol right now after 3 1/2 months on it. The withdrawals are very hard. I feel like I’m in constant fighter flight without it” In context ↗ Withdrawal problems
- Ivabradine“I had to stop my beta blocker earlier this week to try ivabradine (which didn’t work for me) for four days and it made me crash and go back to the place I was months ago” In context ↗ Made symptoms worse
- Propranolol (Inderal), Metoprolol (Lopressor, Toprol)“they also lower my blood pressure (which is already too low)” In context ↗ Low blood pressure or fainting
- Valtrex / valacyclovir“I only started at a super low dose yesterday and I have been feeling kind of gross ever since.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
my resting heart rate will go from 60 while laying down up to 130 to 150 when I stand
In context ↗ - Muscle weakness
on bad days my body feels crazy heavy like it’s full of lead
In context ↗ - Pain & fibromyalgia
now have new burning muscle pain in legs
In context ↗ - Sleep problems
Ever since this began I do wake up more throughout the night
In context ↗ - Light & noise sensitivity
I became sensitive to light, noise, could not have a conversation
In context ↗ - Anxiety & low mood
have been so depressed/scared
In context ↗ - Tinnitus
mild ringing in ears
In context ↗ - Temperature regulation
feverish but no fever
In context ↗ - Neuropathy & tingling
I started developing all sorts of weird nerve issues
In context ↗ - Brain fog
my brain fog isnt severe
In context ↗
Ask Miruvor AI
Similar stories
-
Mostly bedbound for years with ME/CFS, now much better after Abilify and propranolol
They fell ill in June 2020 after a post-operative infection and spent years mostly bedbound, leaving the house once every couple months. Starting high-dose Abilify for psychosis in 2025, then raising propranolol for POTS and adding buspirone and clonidine,…
-
Mostly bedbound with ME/CFS and daily POTS fainting, now much better with pacing
They developed ME/CFS after a COVID infection and were severe, mostly bedbound and fainting daily from POTS, for about two and a half years. Low-dose naltrexone, POTS medication, creatine and strict pacing helped them reach moderate, around Bell 40, but they…
-
Not enough detail to draw a path
Severe ME/CFS after virus, now somewhat better with pacing and POTS medication
Island 53545 became ill at 19 after a virus, had POTS for over a decade and managed to work for a few years, then became severe in 2015 and had to quit work. They credit pacing, POTS medication, migraine treatment, therapy and medical marijuana for…
-
Long COVID with brain fog and air hunger, improved then worse again; metoprolol helped
Osprey 80225, then 33, got COVID in November 2024 and worked through it, developing daily adrenaline rushes, head pressure, air hunger, brain fog and digestive problems while doctors called it anxiety. A flu in December 2025 brought everything back worse;…