Is it normal to have constant chest pain with mitral valve regurgitation

[Musicw]

I'm 27 years old and was diagnosed with heart disease- mitral valve regurgitation back in January following a unexplained collapse.Still having tests and investigations completed however, things haven't been the same following the collapse. I'm feeling constantly tired wanting to sleep a lot and have been experiencing a lot of chest pain. Cardiology aren't too concerned about the pain saying it's normal for my condition. What are priples thoughts. Should it be normal?

[Hidden]

hi I saw this earlier as it’s weekend you may get more responses in week, someone who knows / has your condition so hopefully will respond.

Worth a call to BHF heart nurses who maybe able to advise? They’re very helpful.

bhf.org.uk/informationsuppo....

Good luck.

[Letsallhope1]

I’m sorry this is happening, surely must be very unsettling for you.

Have you had a catheter study to check your coronaries?

I’ve had issues with valves malfunction but never experienced pain. Definitely the tiredness and possibly feeling lightheaded are both common symptoms but not pain.

Are you still getting tested anyway right? Hopefully the cardiac team will get to the bottom if it. What’s the plan for the mitral valve? Any surgery has been planned yet?

[Musicw in reply to Letsallhope1]

Yes it is quite unsettling for me and my mum. She doesn't like seeing me in so much pain. I don't know what a catheter study is I'm afraid around coronaries. I honestly don't think I have had one of these tests completed.

I personally don't feel like the cardiac team I'm currently with are getting to the bottom of what's happening as they have said to me and my parents 'that my heart is coping well with the leak, chest pain is normal for my condition and they don't know why this is and have been reassured that I'm not at risk of a heart attack or a stroke.'

I know that I do know that I will require surgery at some point but we don't know when. I don't fully know what the plan is currently. I have just had a cardiac MRI scan completed now awaiting the results where I hope to get more clarity about what's actually happening.

[Letsallhope1 in reply to Musicw]

just try to push for further investigation related to pain and just say that your life has become unbearable because of it (make it a bit dramatic but go for it if that is what it takes for them to take you seriously 😉).

Also maybe worth looking for a centre of excellence near to where you live and push your gp to be referred there.

Not the same issue of course but many years ago I was the patient in a centre where the cardiologist advice is to take it easy because my situation was “not great” but they could not do anything for make me feel better. Few months later I asked to be referred to the Royal Brompton Hospital, after all my tests on the day of the appointment, I was seen by the cardiologist, I was stopped from leaving the hospital as my condition was critical, I had life saving open hear surgery the following week and 23 year later I’m still here to tell the story. I’m a great believer that putting yourself in the right hands can definitely change the outcome of things (in most but not all situations of course!)

All the best 🙂

[marypw]

I’ve had a moderately leaky mitral valve for over 12 years. I have occasional chest pain, but that is due to costochondritis (inflammation around ribs, related to lupus). However I did have a stress echo on a bike to rule out any cardiac involvement. That might be a useful investigation for you to have. I do get an echo about every year, so I hope you are being monitored regularly?

[Rovelli]

I don't think that it's normal. Plenty of people with mitral valve prolapse manage fine as long as they don't overdo things. Push for more investigations.