I've just came across this community today and am cramming as many posts and responses as I can! It's so good to hear from people with similar issues to myself.
A bit about my background. I'm a 42 year old female and I got diagnosed with AF about 7 years ago. Back then, I was very fit and did a lot of extreme sports - rock climbing, mountain biking.
The AF didn't affect me too badly, and I opted not to medicate. I did try beta blockers, but I found they slowed me down to the point that activity was really affected. Nor did they prevent the heart from going into AF. I didn't have permanent AF. It would maybe go off a couple of times a week.
Over the years, I noticed the periods of arrythmia getting longer and more frequent. In August 2013, it went into AF permanently. Being a stubborn sort of person, I didn't seek medical attention for it. Bit by bit, I began to really struggle with exercise and even walking. The turning point was when I couldn't even walk a short distance and narly blacked out. Fairly sure my body had gone into shock. I ended up in hospital and started taking a number of meds. The pulse was above 170 for weeks. I had fluid on the lungs. Not good. Eventually they got the heart rate coming down and let me out.
Since then, progress has been slow but sure. I've came off dijoxin and verapmilol (sorry - spelling is rubbish!) I stopped taking amiodarone as I'm sure it made me put on about 5kg. I remain on bisoprolol and warfarin. I have no idea what the intention of my cardiologist is but I have no desire to remain on medication should there be a procedure that may help. To be honest, the meds aren't stopping the episodes. they have helped stabilise, but the heart can still pop way up, as well as crash to as low as 30bpm. This is a daily occurence, usually in the afternoon.
What I am really struggling with is trying to get back to fitness and enjoy doing the sports I love. During the last few months, it feels as though my muscle strength and stamina have collapsed on me, and it's a long, hard battle trying to get it back. I've ben plugging away at the gym. I've managed up a hill (a real challenge). the body and muscles just burn. I am making progress, but it feels painfully slow.
My question is this: has anyone out there had this problem, and overcame it?
Many thanks for taking the time to read it. AF has made me feel very isolated. Family and friends have been brilliant, but none of them really seem to understand it. I think a lot of people assume it's heart disease. Apparently I have a strong, healthy heart, which is the main cause of my problem. It's stubborn, and once it goes into AF, it's capable of staying there!
Written by
ymcwhirr
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Hi and welcome to the forum. You will by now I am sure understand that it is your history which has caused the AF as it is typical of younger people who have an endurance sport background. I would not want to be on a beta blocker (bisoprolol) with a HR that low frankly and understand why you are looking for answers.
First point is that it is vital that you see an electrophyiologist (EP) as these guys and gals understand the electrics of the heart , See an ordinary cardiologist and it is like asking a plumber to re-wire your house.. There is list by area on the main AFA website so look it up and ask to be referred.. AF begets AF so the more you have it the more you will so probably a bit sad you didn't take action sooner but there is still hope.. An ablation (pulmonary vein isolation procedure) has good results in stopping AF even if you need more than one procedure. I had three up to five + years ago and have been AF free since. It was ten years before I was diagnosed in 2005 and three procedure afterwards. OK I do still get the odd funny hicup (ectopice beats) but no AF.
The other important point is to listen to your body. O K I know you are a fitness junkie but better to go gently for a while than completely ruin your chances of getting back to the level you were. One needs to accept that things are not right and punishing your body by asking it to preform above it's ability could be a bad idea. Be gentle!
I understand your feeling of isolation. We have all been there and when I started my AF journey this association had not even begun which is one reason why I like to hang around and offer advice as I do know how scared it an make one. Our little group has been growing for some years now and we have people from all walks (and ok Yes runs) of life so there will always be some body with an answer to specific questions. I hope you get comfort.
Bob
Hi _ Welcome to the forum . Quite an interesting post . Whilst i can't help you re your exercise regime I know that we have some extreme sports enthusiasts who will.
Firstly , are you seeing an EP - an Electrophysiologist , a cardiologist who specialises in the diagnosis & treatment of arrhythmias?
Your position in 2013 is almost identical to what I went through in 2008. I could barely walk a few yards & presented at AE. I was diagnosed with fluid on the lung - heart failure. I was told that this was the result of 16 years of AF ( not continuous I might add ! ). As a result I finally agreed to undergo an ablation procedure & have since had 2 more .This may well be what you need & only an EP can advise you.It is better that you get this done as early as possible as AF is unlikely to go away. AF begets AF. It is good that you are on Warfarin.
I have also been on Amiodarone but did not find that this caused weight gain . Rather I found that Bisoprolol did as it slows the system down & quite considerably for me.
You will get lots of support on this forum. When I was first diagnosed over 20 years ago there was v little info available & I really did feel alone. As you say , most people don't understand it.
Thanks for your responses. Very interesting indeed. My consultant has never mentioned the option of seeing an Electrophysiologist, nor any other option apart from medication. It's amazing that you put blind belief in medicine and just assume you are being told every option available. I've asked for a re-referral to review the low-high heart rate cycle. And, in terms of exercise... if I don't listen to my body, it soons lets me know about it I think it would be impossible to do anything extreme at this point. Once again, thanks for your advice.
Ymcwhirr, read your story with great interest. I'm male & 60. Diagnosed in August last year. On meds for life now! Fortunately seems I'm ok running & cycling & doing some weights. No procedures because I have high blood pressure and so shocking of heart into regular rhythm for example, not worth the effort.
Hope all goes well for you and you can get back to your active life again!
I was a keen long distance runner for 25 years and changed to cycling (bad knees) about 5 years ago and now do about 100 miles a week. I am 65. AF started about 6 years ago and I get about 1 a month. My cardiologist says that my AF affects me less because I am quite fit. As you will know, it can take several months to regain fitness once lost but work at it regularly and steadily. So far I have not needed major drugs or ablation and am working on avoiding triggers. Alcohol is an issue for me and I have gradually reduced untill now teetotal. As others have said it might be useful to see an EP. We are all different. Also some cardiologists/EPs are also keen sports people or have involvement in sport, try and find a sympathetic ear. I am lucky that my cardiologist is also a keen cyclist. Keep exercising.
Hi ymcwhir, see the posts on my post 'Amiodarone-to-be-or-not-to-be-is-it-right-for-me' as they look at exercise and what is best. But in short as already advised you need to see a electro physiologist and seriously look at an ablation or a cardio version altho CVs r in my view r temporary solutions. On exercise global fitness is critical but
you need to go on feel. I personally consider leading as best you can a stress free life, rest, exercise, diet and yoga to be very helpful in dealing with AF. It is important to remember that altho AF changes your life there are procedures that can help you be AF free again and failing that you can still lead good life in AF and b active.
mine isnt advertised an EP but if you look into him more he is.
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I think it would be impossible to do anything extreme at this point. Once again, thanks for your advice.
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