ME/CFS
Outcome unclear
ME/CFS with high heart rate, cut daily life; beta blocker, cyclobenzaprine for sleep
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Aug 2023
In their words
- Condition: ME/CFS
ME/CFS takes everything from us.
In context ↗ - At worst: Moderate
short of being in bed all day, I can’t keep my heart rate in a reasonable zone
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
An ME/CFS patient whose heart rate had run high since getting sick was put on a beta blocker, which kept it generally normal except during crashes. A smart watch showed their pacing was worse than they thought, and they had already cut much from daily life without feeling better. Cyclobenzaprine helped them sleep if taken about 3.5 hours before bed.
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What they tried
Also tried
beta blocker· Helped“back and body” aspirin product· Helpedcyclobenzaprine· Helpedpacing· No changezops· Worsesmart watch· Not said
Their words about each treatment
- beta blocker · Helped
I have been a bit high since getting sick, so I was put on a beta blocker - now I’m generally normal, but when I’m in a crash even the beta blocker can’t keep me in range.
In context ↗ - pacing · No change
I’ve been thinking I’ve been pacing decently all this time. I wasn’t feeling any better
In context ↗ - smart watch · Not said
I bought a smart watch yesterday, and one day into having HR data
In context ↗ - “back and body” aspirin product · Helped
I’ve also been taking a “back and body” aspirin product, which has been really helpful.
In context ↗ - zops · Worse
I get a miserable metallic taste in my mouth and a paradoxical reaction: it’s like I’m stoned and wired at the same time.
In context ↗ - cyclobenzaprine · Helped
I’ve found cyclobenzaprine to help with my sleep, but I need to take it about 3.5 hours before bed, and give myself around 10 hours to sleep it off, but it does help if I follow those rules.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME/CFS with raised heart rate; trigger not statedI have been a bit high since getting sickIn context ↗ | Moderate | |
| 2023-08-05 | heart rate kept generally normal by a beta blocker, except in crashesnow I’m generally normal, but when I’m in a crash even the beta blocker can’t keep me in rangeIn context ↗ | Moderate | Beta-blockers (unspecified) |
| 2023-08-25 | sleep helped by cyclobenzaprine; still limited and needing long restsI’ve found cyclobenzaprine to help with my sleep, but I need to take it about 3.5 hours before bedIn context ↗ | Moderate |
Adverse events
- “I get a miserable metallic taste in my mouth and a paradoxical reaction: it’s like I’m stoned and wired at the same time.” In context ↗ Side effects
- Cyclobenzaprine (Flexeril)“I’ve found cyclobenzaprine to help with my sleep, but I need to take it about 3.5 hours before bed, and give myself around 10 hours to sleep it off ... If I need to be up earlier than that though? Oooof.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Heart symptoms & palpitations
even two hours lying on the sofa watching TV and I’m still 90+ bpm
In context ↗ - Sleep problems
I’ve found cyclobenzaprine to help with my sleep
In context ↗