Only just diagnosed with AF

Hi I have recently been diagnosed with AF.

I am shocked how fast it came on my. I'm a walker how walks 5 to 6 miles twice a week with a group.

This has had to stop at the moment as I get very breathless when walking up hill especially. I take medication for high blood pressure also I have just started taking warfarin.

Is there anyone else like me out there?

Will I get back to normal?

29 Replies

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  • Sue, welcome to the forum. I have had AFib for over ten years and know exactly what you are going through. It's a condition that causes a lot of new life choices and anxiety if you let it. My advice would be don't give up your walking and don't let fear take over. If you need to cutback on walking up hills than allow yourself to take it easy and walk a different route but don't give up your exercise. Most importantly, let your friends you walk with know how you are feeling and ask for their support. Keep smiling and enjoy your life ! Gracey

  • Well yes,, just about a million of us Sue!

    Funnily enough I used to be a walks leader for my local Ramblers Association group and also did much fell walking in the Lakes and it has been my arthritic knees which stopped me rather than AF.

    AF is life changing not life threatening but this can be good. Take stock of your life and see what you can do to improve your well being. Diet is important as is (sadly) a reduction in alcohol intake for most of us but gentle exercise like walking is fine so don't stop. Don't look for "normal" as this is you now and you will get to sort out what you can and can't do quiet quickly. AF is a long journey and you do need to see the right doctors.

    Go to AF Association website and read all you can as knowledge is power. You don't say what other drugs you are on but I bet your doctor put you on a beta blocker and these will make you slow down.

    Ask specific questions and we will try to help.

  • Hi Sue5511

    I was diagnosed on Christmas Eve so can sympathise with you. I'm still waiting on an echo, with my GP currently trying hard to get it expedited. I too have started warfarin and coping but missing my cranberry sauce!!

    My blood pressure meds were increased to help lower my pulse. I also have polymyalgia rheumatica so tiredness from that and the af, well just say not very active at present!!

    Stick in there you certainly aren't alone and this site has so many people with great empathy and advice. Nice to be able to talk to likeminded people.

    Soon be summer and we will all feel better, I hope!!

  • Don't expect miracles but with the right treatment and a bit of luck you can get back to normal. I am one of the many success stories and I just spent a week on Little Barrier island doing conservation work to prove it . The year is life after AF.

  • I have had afib for 10 years......just keep walking up the hill...........I also swim like 50 laps.....definitely don't stop exercising......

    If people walk too fast find people that walk a little slower

    Good luck

  • And don't give up on the occasional cranberry sauce just adjust the warfarin.

  • Hi Sue, AF has meant for me a steep learning curve, some tough times with anxiety, persistent trial and error to find my individual triggers that start it, all of which I wouldn't voluntarily go through again - however the result after 2 years on Flecainide is a healthier happier person with no side effects and 80%+ fit for purpose, just lacking a small bit of energy and I guess that's the pills not AF.

    So grit your teeth, change and life does get back to a 'new normal'. Good Luck!

  • Dear Sue and welcome to our mad AF world

    - answer to are there others like you - yes.

    - Will I ever get back to normal - depends on what you call normal.

    There are treatments that can eliminate AF, both drugs and procedures such as ablations - both come with risks and sometimes consequences so Bob's advice is, as ever, great advice to go to the AFA and inform yourself of your options.

    Becoming informed WILL directly affect your treatment options - if you don't know the questions to ask of your doctors - you may miss out on treatment options.

    There is life with AF and there is life without AF, but once you have got through the frustration of accepting it may be different - to a greater or lesser extent depending upon how symptomatic you are, how you cope emotionally and with the anxiety which inevitably accompanies AF - it can be (as my secretary used to say) 'A great life if you don't weaken'.

    Very best wishes - you have many companions on your AF journey who are supportive and very informed so have a moan, ask any questions, express your concerns - they saved my sanity! CD.

  • Hi Sue, coming to this forum is a really good move. I was diagnosed in November 2014, I was devastated and very scared. I found this forum and now feel far more confident about every day life. It is comforting to know that there are other people out there who will offer support and information. Hope you can continue your walks with your friends soon. Bernie x

  • Hi Sue. Welcome to this forum. There is a wealth of advice and reassurance on here. I was a runner when I was diagnosed which pretty much put pay to my enjoyment of it. Two years down the line, I opted for an ablation which worked for me. That was nearly two years ago and since then, I'm back running and enjoying my sport once again. I wish you all the best. Another Sue!

  • This forum has been a godsend for me! It was recommended by a doctor when I was diagnosed 3 years ago. Please be assured you are not alone and there is always someone here who will listen and comment on any concerns you have. Keep walking - maybe just a bit slower - I also get a bit breathless but just pace myself. Good luck. Patricia.

  • Sorry to hear that. I was diagnosed last October, also a walker. I walk 3 miles every day, and I have not had to stop. I don't get breathless through, just horrible palpitation when I have an episode. Hope it gets better so you can get back to walking, why not walk on not hilly places for awhile?

  • I went into AF back in November. I walked 3 miles a day to work before.

    Had a successful cardioversion at the end of January but didnt feel any better and certainly not able to walk further than the top of the stairs.

    After stopping taking Bisoprolol and Amiodorone I have found that in the last week I have been able to walk 1.5 miles no problem. I hope to be able to keep this up.

    I think we have to find a new normal, although a friend of mine had an ablation for his AF 6 years ago, and no AF since. He regularly cycles 60-100 miles on a Saturday and cycles across Europe in his holidays, so there is hope (and I'm clinging on to it!!)

    Luckily I'm on Rivoroxiban and have no limitations on what I can eat or drink, and no INR tests. Maybe you could discuss with your GP/Consultant your suitability for changing to one of the new anticoags?

  • How did you get so lucky to stop meds or did you decide to stop? I, like you, was diagnosed and cardioverted in dec'15 and heart is behaving but med is kicking me hard and I want to stop but not sure I should. Heart doc thinks I need to be on indefinitely, Im not ok with that if Im not having any more afib. If it rears its ugly head up again, then will renegotiate with meds

  • I have a really amazing EP, he listened to me, and could see that I had no life on this drug.

    He explained the increase risk of going back into AF which I fully appreciate but it's a choice I am willing to make.

    Actually he was pretty angry that I had been discharged after my CV and was still on 12.5mg of bisoprolol with a heart rate of 50. I lived like that for a month!!

    My advice is keep pushing if you don't like the answers.

    This has been the worst 5 months of my life, but bit by bit I'm getting my life back.

    Got off the Amlopidine today too because of the swollen ankles and feet. My GP didn't even put up a fight.

    I guess I got lucky

  • Im seeing an integrative medicine doc tomorrow and second opinion cardiologist next wk, going to get my questions answered. My plan is to get off sotalol and try and get my life back unless they convince me thats a bad idea. Thanks for your post, thats encouraging. If I end up sith alot of afib I will cross that bridge, but would like to focus on healthy life style and see how it goes. 

  • Sorry I am on meds. I just didn't mention them. I take medication for high blood pressure daily. I have done for the past 9 years. I wouldn't stop taking them unless advised by my G. P..

  • Hi Sue5511 I have had it for many years, my episodes last usually about 24 hours. It is frightening but cardiologist insist that I am on the right medication. Beta blockers and warfarine. Try to stay calm(very difficult) and sleep sitting up. 90 degrees. Overdoing things or stress starts mine off I am convinced of that. Best wishes.

  • Thank you so much for taking the time to reply to my post. Best wishes.

  • please follow the forum-also try to get a consultant specialising in A fib. It can be a long journey but A fib seems to be very individual - no 2 people seem to be affected the same. Stay calm if A fib comes along .

  • This site is so re-assuring. Always someone there.

    Muriel

  • Hi Sue - and its welcome from me too

    so you found yourself on this biz are roller coaster , and you can do no better join this forum to help you work through it, by sharing thoughts , picking up and passing on ideas .

    AF hit me back in August had a real bad palpitations a couple of mornings so took myself of to the local walk in centre and whisked of to A & E . Yup its a bit of shock , you wonder whats next and knowing the even for medics is not straight forward. Ive never worked out want normal is anyway so its just a new if unwelcome normal to deal with .

    I am sure that our first introduction to AF is a common story .

    Inconvenience and uncomfortable that's for sure but it can be controlled .

    Good luck on your new journey - and sorting out a new normal and you will .

  • Thank you very much for reply.

  • My AF came on overnight caused by ? Septicemia ! I had fantastic treatment in Tenerife (on holiday at the time)quite fit apart from Rhuematoid Arthritis,so it was a huge shock! Back in UK went privately to see Cardiologist as waiting time in Cumbria is ridiculous!

    Now on Apixaban (NOAC) taken twice a day,no restrictions or blood testing,apart from when you begin treatment,Bisopral this slows you down slightly ,Digoxin and Bendroflumethiazide,also meds for Rheumatoid,but I'm getting there,still look after a 2yr old 2/3 times a week!

    Good luck!

  • Sue 5511. Don't let this get you down. I've had AF 11 years now and permanent for the last 3+.

    I have just walked 30 miles in 3 days down in Devon/Dorset including going up to Golden Cap, the highest point in the South at over 600ft. Yes it was hard going and I get really puffed but always recover well. I can say that I feel better now with my AF than I did when it first hit. Just get your meds right and make sure you are the boss and not the condition. My lifestyle is no different now than it was pre AF.

  • This sounds so reassuring I just want to be able to continue walking and working on my allotment. After reading these lovely posts It's helped me .

  • Each person is different. However, what I have found is that it helps to control food and drink that stimulates. I.e. alcohol, tea, coffee. Use decaffeinated. Garlic and chilli are 'out'! I am also on a low dose of ramipril. As a very active person I have had to change my routine. I do not do any 'resistance' excercise, but have replaced that with yoga, which increases 'core' strength. I take fish oil and magnesium. At this point I have confounded my Consultant. Yes, I take blood thinners and beta blockers, but would be interested see if I could do without the betablockers. Good luck!

  • Sue, just to say also that my cardio has always advised that I can exercise as much as I want, always listening to my body. I play tough badminton once a week and cycle a fair bit. 

  • Hi,

    Welcome to the club none of us want to belong to!

    I know everyone's experience is different, but I would say the worst time in my Afib experiences was the first few weeks. That time is the most worrying and even frightening, but as you find information and gain knowledge, you will begin to adapt and learn the best path for yourself. There is a vast amount of experience on this site you can tap into, not to mention support and humour.

    My advice would be to gain expert medical advice from an electro physiologist, take whatever medications he or she advises and see how you go. If you don't already practise mindfulness or meditation try doing so. You have nothing to lose, but much to gain. Eat whole organic foods and avoid  additives. In particular avoid caffeine, aspartame, mono sodium glutamate and alcohol. If you are able to keep active it will help your mental outlook and physical health. It doesn't have to be excessive a gentle walk in pleasant surroundings can be really beneficial. Enjoy life, be kind to yourself and you will adjust to your new circumstances. Life can still be good!

    Wishing you all the very best!

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