Dilated cardiomyopathy

[Jamie27]

Hi just a quick question if anyone has any idea... I was diagnosed with dilated cardiomyopathy and was told to not get my heart rate over 120bpm which is fairly difficult... this was not advised by my cardiologist but by someone at heartbeat... I am just wondering if this is dangerous as I have taken up cycling to work which is nearly 7 miles here and 7 miles back? Just wanted some reassurance I am not causing any longer damage

Thanks

[Bekiebexs]

Hi Jamie, I also have Dilated Cardiomyopathy.I have never been advised about this maybe because I am of an age where I wouldn’t be cycling this far or at all😊

When I was first diagnosed I used to do a lot of walking and felt really well doing it .

That was about thirteen years ago now .

Not sure if this helps you but would definitely speak to your Cardiologist to get reassurance and to put your mind at rest .

[Jamie27 in reply to Bekiebexs]

Hi beki! Yeah I need to speak to him

Again it’s been atleast 6 months since I last spoke to him haha! I’m only 29 and used to be extremely fit! I don’t have any issues other than the odd chest pain but they have settled since first getting diagnosed! It’s something definitely I need to chase

[Bekiebexs in reply to Jamie27]

I think exercise is good. I always go by how my heart and body feels .Happy cycling Jamie and take good care .

[Jamie27]

I am bisorapsol eplerone and ramipril sorry I’m very bad with the names haha

[Jamie27]

Yes I’ve been on all the right meds etc and my EF has actually improved and my heart size has also decreased slightly.... I do have a heart failure nurse yes

[Jamie27]

Yeah I am currently waiting for a second MRI to see if I can go back to playing football which is all obvious good signs.... they have said it could be caused by a virus possibly but have advised we will probably never know

[GM1987 in reply to Jamie27]

Hi mate I have read through your posts & have some many similarities. I have mild dilated cardiomyopathy & take bisoprolol & ramipril, they are certain my case is due to a viral infection at some point before this started. How did the 2nd mri go? Did you get back to football…!?

[Shar28]

Hi, my husband has DCM too. His cardiologist advised him that for people without heart conditions max heart rate is 220 minus their age and heart patients should exercise at 80% of that figure. So for you (assuming your cardiologist would give you the same advice) the calculation would be 220minus 29 = 191 x 80% = 152.

I’d suggest a couple of things:

1. ring the Cardiomyopathy UK nurses. Here’s the link for the website in case you haven’t discovered it

cardiomyopathy.org

2. Ring your consultant’s Secretary and and them to ask your consultant and let you know.

All the best to you and your loved ones.

[Jamie27 in reply to Shar28]

This has been a massive help thank you so much! ❤️ I will certainly look in to all of this!

[Matt1975]

I had same diagnosis and was told to keep around 125bpm. I did go over now and again as you cant help it some times. My cardiomyopathy has improved and EF gone up to 55% from 14% by exercising regularly and losing weight, so I wouldnt worry too much if you go above by a bit now and again, just keep up the exercise it will do you good if you keep going.

Good luck with everything and stay focussed on improving your health.

Matt

[HarryJK]

I have dilated cardiomyopathy, my consultants advised that exercise is fine as long as you aren’t out of breath to the point that you can’t speak enough to hold a conversation. Absolutely nothing about heart rate levels.

[bhfels]

I’d check with your consultant. I was also told not to get my heartbeat too high , continued to cycle to work and got told by both my consultant and Gp to get off that bike. I do however have an an arrhythmia and DCM that has progressed to heart failure , although it is very well managed and does not impact on my day to day life. So I would guess that I’m starting from a worse place than you.

Basically how it was explained to me , was that the increased workload meant that there was a chance that I could black out while cycling as my heart couldn’t meet the demand which was dangerous. I do still occasionally cycle but no steep hills and at a very stately pace.

I learnt to love golf

[Dru75]

Hi I’m 46 and diagnosed with HF 6 months ago. I had an EF of 15 at first although that has improved. I bought myself an exercise bike and was told by a fitness rehabilitation coach to not let my bpm go over 100 at first to avoid putting too much strain on my heart. I find that hard to do anyway as my meds have really slowed my heart rate down, so even when I’m a bit breathless and working up a sweat on my bike I can’t seem to get my bpm over 70 😳 definitely talk to you heart nurse.

[theonethatgotaway1]

Hi Jamie just wondering how you are getting on?

I also was diagnosed back in 2020 with heart problems. Was extremely fit and they said could be virus, could be genetic or could be lifestyle, diet, testosterone jabs for weight lifting or recreational drugs, weed/occasionally mdma or a herb for ED...or a combination of all above.

Right, but something this extreme to where I was in icu for 10 days with ef of 12%, going from being in the gym fine, lifting weights and boxing, to a week later hanging on for dear life! There was no clear sign of what caused it. Its hard for them to say what has caused the damage or how your heart is in that current condition.

I am just curious to how to improve the ef rate and the overall condition safely with exercise and lifestyle changes.