LVSD and atrial fibrillation

[Fifteensaresgreat]

After a few months of feeling awful I've been diagnosed with Ehlers Danlos/ hypermobility, left ventricular systolic dysfunction with impaired ejection fraction (42%) and episodes of atrial fibrillation most days. Due to see the cardiologist soon. Can anyone with similar experiences tell me what to expect? I've just turned 50 but feel 20+ years older and that I'll need to give up my part-work. Even simply activities like an easy walk leave me with joint subluxations, atrial fibrillation and exhausted. So far its just physio and pregabalin that's been offered. Any insights welcomed

Would you be in NI OP? I know things are incredibly stretched there just now - even more than on much of the mainland - but I can make some general recommendations for the EDS stuff.
• physio is worth its weight in gold: ask their advice about splints, they should provide some, recommend some - & crucially, advise as to best usage: overuse will absolutely wreck your joints
• ask physio for their advice on walking aids & if they suggest a zimmer frame, literally roll with it, they’re not doing it for the craic & walking for as long as possible is the name of the game
• orthotics: get a referral, get your custom orthotics made, be astonished at the difference it makes (seriously) - they’ll also advise if you need anything more (eg an AFO)
• if you can access hydrotherapy, that is amazing; if you can’t & there’s any kind of gentle aqua-fit class, [once cardiology clear you to exercise] give it a go, even if you hate swimming

My cardiacweird is a different form - & very míld - so I’m afraid I can’t really advise there. It will definitely involve medication - well, more than one I’d expect: the British Heart Foundation offer support services for people with cardiac issues as well as lots of information about heart conditions - it might be worth checking them out.

Gabapentin is designed to treat neuropathic pain - you may get nerve pain in EDS if you irritate a nerve within a hypermobile joint; but frankly it’s not an appropriate treatment. Not least because it’s notorious for causing weight to pile on & prove impossible to shift. You can’t have NSAIDs - at the moment at least - so I’d recommend using heat, ice, paracetamol, OTC co-cocodamol, asking for prescription strength if that works for you (plus something called naloxegol/moventig that stops opiates slowing your bowels) & a referral to your nearest pain management programme if your GP isn’t happy/confident managing things themselves.

Good luck at your cardiology appointment.

Thank you RosaMayBillinghurst That's really helpful and reassuring that it looks like I'm on the right path with physio and the referral to the pain clinic. I wish you well- it's a horrible syndrome but good to hear there's things out there that we'll help.

I was diagnosed with Afib a couple of months ago (though I did have a few episodes about 20 years ago which I ignored). I'm 51 but don't have any other health issues. When diagnosed I was given beta blockers and blood thinners. I had an echocardiogram a week later and saw a cardiologist a few days after that. She said to stop taking the medication as my stroke risk was low and prescribed an anti arhythmia and beta blocker to take only when I have afib episodes. I had two since then, one which responded to the medication and a worse v fast hb af episode which didn't respond so I went to A and E.
There is quite a supportive Facebook group for AF I can look up the name if you would be interested in that?
When is your cardiologist appt?

Am glad I could be some help Fifteensaregreat - I was tentatively diagnosed while I was at university then it was confirmed a couple of years after I graduated by Prof Grahame - whose name is all over stuff to do with EDS [in the UK] at UCLH, back in the glory days of him being allowed to review patients, even!

There is a lot of frankly quite bonkers stuff online about EDS so I’d steer clear of online groups for it: it can absolutely be very nasty; but it is also hugely variable not just between, but even within, subtypes. Unfortunately a lot of people in the online spaces are very invested in their identity as someone who is unwell & as a result, competitive about it - literally unhealthy behaviour. You also get people who are seeking out a diagnosis of EDS - not of what’s wrong with them, specifically trying to get diagnosed with EDS, which is a very different thing. When I was first diagnosed - almost 20 years ago - it was nowhere near as bad & my GP suggested I join some FB groups for peer support. At my next appointment with her I said I’d not be doing it as I wasn’t into competitive illness. When she suggested it again I showed her a sample - she was horrified & never brought it up again. There may be some nice normal groups out there, but it is something to be aware/wary of.

Thanks for all the good advice. Saw cardiologist and now waiting on more results and MRI. Advised to start beta blockers as Ellerby83 mentioned but I'd prefer to wait on test results to be certain it's the best route. Apparently I have a very low p wave but not sure what the implications are. Have to say I feel disappointed as was hoping to have a clear treatment plan at least for the heart but it still feels elongated and vague.

I’d suggest you start the beta blockers Fifteensaregreat - for a start it means when you next see your cardiologist you can tell them if they’ve helped at all. While they don’t seem to have communicated it well, there is a sound reasoning behind the decision to prescribe. It’s done for the LVSD not the AFIB (though it should have a beneficial effect there too) & is to: lessen the symptoms of heart failure; improve your current clinical status & reduce future deterioration; and to decrease the risks of hospitalisation, of morbidity, & of mortality. Not taking them will also be seen as a cause for concern by your cardiologist. Do they have a nursing team you can contact to discuss it further?

I absolutely promise I understand the frustration of feeling there’s no clear direction &/or plan (I’d to have THREE sleep studies thanks to clinical upstuffings & the follow-up shenanigans are still ongoing such that the first study was done in October 2021; I was diagnosed & medication prescribed in April 2024; represcribed June 2024 due to error; not received until end July due to error…🤦🏻‍♀️); hopefully your MRI will help them decide exactly what’s needed/best.

Love the word shenanigans- & it very much describes things for both of us. You make a much better argument for beta blockers than the cardiologist who used phrases such as 'try' and 'likely to cause fatigue' when I wanted decisive recommendations using words such as 'need' and ' will improve fatigue'. Thanks again for the advice ❤️

Ah, Fifteens, it’s so frustrating isn’t it? They’ve to be careful not to over promise, of course, but sometimes they course-correct too far & - as with you, it seems - give patients the impression that they might as well knock back a couple of tic-tacs as swallow their prescribed medication. There is a chance the dose will need fiddling with &/or they’ll decide you’ll be better on a different medication or mix of medications - but they can only figure it out if you try this one & see how it goes. Which doesn’t seem very C21, I’m sure we’re meant to have stuff personally tailored to our genomes & diagnosis by tricorder (or whatever the swipey thing in Star Trek was called - the medical one I mean, not the weapon…); but until we get there, we’ve to plod on with that bit of trial & error. I’ve got epilepsy (I’m basically a defective model) so the swapping, titrating, & general tweaking of medications to try to create order seems quite natural to me - an easy process to trust. I hope that you don’t have to do too much trusting but instead get to enjoy improvements soon.