AF and tiredness

Hi, I was diagnosed with AF five weeks ago. Had been feeling not well for a couple of months, then almost collapsed whilst having a shower and realised something was not right. Anyway, am on warfarin to thin my blood, though as the anti-coagulant nurse said it's been a wee bit tardy and is still only 1.5, not up to the 2-3 they said it needed to be. Also on betablockers (bisoprodol) along with my statin and losartin the other blood pressure tablet I take.

But, my main question is, does anyone else suffer the extreme tiredness I get? I am also lacking all kinds of stamina, can't even cook a simple meal, do anything really, can't even hang the washing out! I get tired after about 4-5 hours and have to go back to sleep, usually get up about 9am, then am back asleep by 2pm, up again between 5 and 6pm and in bed, usually before 10pm!! This is driving me crazy. [part of it I know is that I'm on several heavy pain killers due to having chronic pain in my ribs (and that's a whole other story) and most of those warn of tiredness - but this is a whole new level of tiredness and lack of stamina]

I work for myself, (professional genealogist), so at least I don't have an employer to worry about, but I do worry about being able to keep up with my work.

I am very lucky with my husband who has been extremely supportive, but he is disabled himself, he has Parkinsons', though it is well under control.

Anyway, just wanted to vent a little and see if anyone else had the tiredness problem, oh, yeah, and the breathlessness as well. See the cardiologist in a couple of weeks, so hopefully get some answers then.

Carol

30 Replies

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  • Hi Carol and welcome to the group.

    What you describe is typical and a lot of it will be the bisoprolol I'm sorry to say. If you have paroxysmal AF where it comes and goes then there are other possibilities in treatment. My question would be who actually is treating you.as GPs seldom have the experience needed to properly treat this complex condition. The problem is that we all experience different levels of AF and it is such a mongrel condition that no two people respond the same to drugs.

    I am very glad that you are on warfarin which by the way doesn't thin the blood it just stops it clotting too fast and reduces your chance of having a nasty stroke.

    I hope the cardiologist will be able to shed some more light but really the people to treat AF are electrophysiologists. cardiologists who specialise in rhythm problems. they are the electricians to the other lot's plumbers..

    Vent away by the way we all know how you feel.

    Bob

  • Thanks for the welcome Bob. Still getting to grips with this. Will hopefully know more after my appointment in two weeks time. I'm beginning to realise from my reading that the condition is different for nearly everyone; and just how many people suffer from it. I'd never heard of it until they told me that was what was wrong with me when I was in hospital. Now, nearly everyone I talk to knows someone who has AF, including my uncle, who has had it for over 20 years; I knew he had heart problems, just not exactly what.

    Yes, Warfarin to avoid strokes, as you say doesn't thin the blood, but helps stop the clotting. I'm hoping when I go back again to the clinic tomorrow it's increased from 1.5 to higher, currently taking 7mg per day.

    Cheers

    Carol

  • Hi carol,you do not say what strength of bisoprolol you are on but i would say that it is more than likely it is the bisoprolol that is making you so tirerd as it is there to slow your heart and you down.I have found it gets better in time i think your body gets used to it.Also welcome to the forum

  • Hi I only took lowest dose and got severe symptoms

  • Hi, just looked it up, 5mg of bisoprolol.

  • Yes and yes Carol. I get tiredness and occasional breathlessness. Spent yesterday painting doors and am shattered today, more than normal tiredness we are used too when we have done too much. I feels very debilitating.

    Your cardiologist will most likely adjust your meds so be sure to tell him/her all your symptoms.

    Best wishes

    Dee

  • Thanks Dee, am tired after just going to the bank and for a coffee with my husband! He says he can hear it in my voice when I get tired. Part of my problem is the tablets I take for the chronic pain cause tiredness as well; so maybe this wouldn't have been so bad without them. The breathlessness is new though... have to take extra breaths every now and again.

    Carol

  • Hi Carol, yes I really get where your coming for, doing the simplest of thing feels like ive done the insanity work out (not sure if you know what i mean) I'm breathless and I do indeed lack stamina, i can only work two days and the other five are to recover!

    Its my absolute bug bare, I find it so frustrating, i take sotolol and also on im warfarin, I think its the condition as well as the medication that can cause such an unwell feeling.

    Best wishes for your recovery

  • Hi - thanks. Lacking in stamina was one of the things that alerted me to something being wrong!

    I'm so glad I don't work for someone else anymore, it was bad enough before with the chronic pain, I was down to three days a week; not sure I could even manage two now. Although not getting as much done as I'd like, at least working for myself allows me to control my hours.

    Hope you're doing okay

    Carol

  • I'm on bisoprolol too, as well as warfarin, and although it doesn't get to me as badly - I've been on it for a while - I know it makes a lot of people very tired, and I am a bit inclined to a nap over the laptop... Some features just end up being six pages of ddddd... There are other drugs, perhaps your doc would be prepared to discuss with you because your level of tiredness sounds absolutely debilitating. Hope you get it sorted soon!

  • Thanks, I'm keeping track so I can discuss with the cardiologist when I see him in a couple of weeks. Perhaps he can recommend a different beta blocker.

    Carol

  • Yesterday I didn't have the energy to get into my day clothes. Today I'm up, showered, hair-washed etc and feel terrific! It's the nature of the beast. For months I tried to fight it then went down with a virus which flattened me so now I am more accepting of the condition although it still riles me from time to time. It's the unpredictability of it which is soooo frustrating.

  • Glad you've got more energy today. I know what you mean though, some days I just rest in bed.

    Carol

  • I get up in the morning full of bunny bounce and ready to tackle the world, but after a few hours house cleaning and shopping, or a round of golf all I want to do is sit down, put my feet up and snatch a few ( quite a few!) zzzz`s. Not sure whether the tiredness is due to the AF, medication or simply age, but there seem to be an increasing amount of tasks which require attention and I just don`t have the physical or mental energy to do them!

  • Know what you mean about not having the energy to do things. Just putting the dishwasher on was enough for me! Frustrating when you think you have energy to do something and it runs out before you've finished.

    Carol

  • I have PAF and there are days when I feel tired, shaky-legged and puffed. Other days, I'm full of zip and feeling great. I blame the condition as the only med I'm taking is anticoagulant.

  • Hi, hate that shaky legged feeling. Hope you're having a good day today.

    Carol

  • Welcome.

    I to get tired, some days are better then others,I think you should tell your Dr about being short of breath, I'm having a scan of my heart tomorrow to see if I have heart valve problems.

    You have come to the right place we all share our thoughts and help each other.

    I hope you are soon feeling better.

    Christo.

  • G'day Carol,

    When my paroxysmal AF struck (in Jan 2010 aged 65) I was sent to hospital who were on the ball and within 9 hours of onset I had a diagnosis and medication treatment started which I am still on today. Prior to AF I was already on Ramipril and Simvastatin, once discharged from hospital and back home my additional medication was Bisoprolol (5mg) and Warfarin (average 5.5 mg per day). I might add have lead a perfectly healthy life and have no other cardiac conditions other than AF.

    The tiredness started when I got home - and the feeling of uselessness and breathlessnesss. In fact I could hardly walk any distance - it used to take me 30 to 40 minutes to walk a distance I can now easily handle in 10 minutes. 8 weeks after diagnosis I was back at work driving buses working 8 to 10 hour shifts with no side effects at all. Yet when I was off shift and home relaxing, AF events would return, tiredness would return and coldness of my feet and hands would occur.

    I eventually related the onset of AF to food and a dodgy digestive system and so treated myself to a new diet and nowadays, cannot remember when I last had an AF event, or had cold extremeties. I eventually retired at 67 but continue to work but part time driving buses. All the time I am working I never have any tiredness and work often 12 hour shifts. No sweat ! BUT .... even today, when I am off shift and home relaxing the tiredness sets in and by 2 pm I have to have a napette for an hour or so - then wake up, get up and am ready to party. Mind you - often the tiredness doesn't hit me when I'm home at all, so I don't sleep. I'm not into blame games but rather seek explanations and in this case I believe Bisoprolol is a contributing factor. But it is doing such a good job of containing my heart rate to something acceptable that I won't come off it.

    I have had disruptive sleep patterns for many years which I explained away as being a shift worker (25 years on the buses). Now I'm more inclined to think that it may be diet. In recent months I have cut out a range of green veggies and am now finding an improved quality of sleep.

    On balance though I explain away the tiredness in very simple, logical, non medical and non scientific terms - that since AF hit my heart has intuitively wanted to tear away back up to the 160 bpm it was at when diagnosed. The Bisoprolol is powerfully exerting itself to keep the heart rate down to 68 bpm - so there is this 'push/pull' effect going on inside me and well, something has to give, and it manifests itself in tiredness - but why not when I'm working, dunno ! :-)

    I am not into exercise greatly but enjoy getting out and about. I travel to Australia every year or every 2 years, no sweat and 2 trips ago I did the Sydney Harbour Bridge climb ( up 500 ft). Maybe my body has now settled into its 'new' life. Stick with it, eventually things will improve and settle down BUT - dare I say it - life won't ever be normal again. It will be very manageable and enjoyable though and your quality of life will return, it will just be a tad different.

    Cheers

    Aussie John

  • Hi John, loved your post, it sums up nicely the AF journey. It is really encouraging to know that there is life after the onset of AF.

    Keep posting!

    Regards.

    Phyl.

  • Hi John

    I am new to the site and what a brilliant bunch of people sharing their experience of this. I too started with PAF in 2010 brought on I think by a stressful job, Swine flu, bronchitis and losing my lovely Mum all within three months. Oh, and I put my back out and was diagnosed with a slipped vertebrae. I too was diagnosed within several hours and sent home with Bisoprolol 2.5 mg and Warfarin. My Cardiologist then decided I did not need Warfarin and was put instead on 75mg of Aspirin.

    I went through the terrible debilitating tiredness for some time but this did improve greatly. All I can say to people newly diagnosed is to go with what your body is telling you and rest when you need to

    Last year I began having near blackouts and my pulse rate was only 47 most of the time so my doctor decided they were maybe over treating me and so reduced my dose to 1.25mg Bisoprolol. Took a while but now feel much better. Still have days where I feel breathless but nowhere near as bad as initially.

    I am now retired but manage to go for fairly long walks and have my beloved allotment to tend. It certainly is a journey and I wish everyone to be able to cope well with their af. I would rather not have had it at all but just glad to be here and still enjoy life. As you say John, life is not the same but is manageable and enjoyable

  • Hi there loobylou,

    Yes, I'd forgotten the times that my heart rate dropped to around 46 bpm - far too low for me, but I have to say that by watching my food intake and diet seems to have helped stabilised things incredibly and my heart rate is now constantly in the range 65 to 70 bpm, and that for me is fine. But it is the Bisoprolol that is keeping it there, so I work on the basis - if it ain't broke, don't fix it ! I just put up with the side effects which are nowhere near as bad as they once were. And yes, you are right - when in doubt listen to your body, be guided by what its telling you and try your best to make life easy for it.

    My GP did try reducing Bisoprolol from 5 mg to 2.5 mg but my heart rate went ballistic and raced away back up to 100 bpm - too dodgy - so I'm stuck on 5 mg. But hell ! who cares life is quite manageable, enjoyable and I can still work.

    I thought my original cause was stress, and there may still be an element of it at the time but for 2 and half years prior to being diagnosed I had massive, massive palpitations and because I was a bus driver working shift work, by the time I could get off shift and make an appointment with my GP for an ECG it was too late. It had passed and the ECG showed nothing abnormal. I have now learned that I may well be vulnerable to electro sensitivity as I carried my mobile phone in my shirt pocket 5 or 6 days a week, right over the heart ! I did this for the 2 and half years I'd had these massive palpitations. It was only after hearing a radio broadcast sometime in 2009 commenting on research being undertaken on the dangers of radio wave emissions from mobile phones that I stopped this. Perhaps too late because as I said, Jan 2010 and AF hit !

    May the force be with you.

    John

  • Aussie John

    It would be helpful to understand what changes you made to your diet to improve things? What did you cut out and what did you add in?

    Many thanks

    JELS

  • Hi carol , just joined this site , diagnosed month back with PAF and put on bisoprolol and even down to the not being able to hang out washing ( all sounds exactly same as my symptoms ) felt so bad cardio doc took me off them (dont want to take warfarine ) staying on 75mg asprin and he has given me a beta blocker that he describes as a pocket pill that you just take as and when , I feel much better except when laying down wheny heart goes very fluttery , very scary .sorry about long rant to :-)

  • Also am meant to go to sydney september to stay with my daughter and meet my new granddaughter born yesterday , but even though have bought ticket I feel to afraid to go now especially as I go alone !!

  • Although it does feel a very scary experience worrying about what might happen, the 'what if' are always worse than the actuality. I once woke up on a morning I was flying with AF and spent several hours debating with myself whether or not to go. I did it step by step, I'll drive to airport and see how I feel, then I'll take my time and see how I feel, I'll get to the check in and see how I feel etc etc. got onto the plane and it was no worse, no better, so off I flew. My AF lasted another hour or so and then settled down and I had a snooze and then ready for energetic weekend with 2grandsons aged then 6 & 8. Nothing bad happened.

    Take it step by step and remember you can bale out right up to the minute they close the doors. Think about the joy of seeing your granddaughter and focus on the positives, coping with AF is enough, don't allow anxiety to put a hold on your life. Seek help with the anxiety, sometimes we all need help and support to fight it. Keep well and enjoy your trip! xx.

  • Hi there lingooz,

    May I suggest you get a letter from your healthcare professional who has treated you giving an outline of where you are at in respect of treatment. Carry it with you throughout your flight. Also make sure you have adequate supplies of medication for your round trip put some in your checked baggage and enough for your flight in your cabin baggage, making sure you have a copy of your prescription with you. (That said I have never ever been challenged by any authority in Heathrow, Hong Kong, Kuala Lumpur or Sydney or Melbourne as to my prescription drugs). I normally fly Cathay Pacific to Hong Kong, change planes and have a few hours on the ground. Total flying time to Sydney is usually around 21 hours - no sweat. Keep up your liquid intake in flight (best non alcoholic) and try and get as much exercise by walking around the cabin as much as possible. I bought flight socks for my last trip as a precaution. If you have any special diet requirements get your travel agent to notify the airline. Who are you flying with ?? Make sure you have travel insurance, there are plenty of Insurance companies around who will insure you - I'm with Barclays and I took out travel insurance with them covering me for AF, high blood pressure and cholesterol issues. Trust me - you just won't have a problem. Where will you be in Sydney ? I lived there for over 35 years and so know the place pretty well, two major hospitals come to mind in an emergency, Royal North Shore is one (at St. Leonards) and the other is Westmead Hospital, near Parramatta, then there is the Nepean Hospital out at Penrith. But once you've settled in to Aussie life after the flight you won't have a worry. Sit back and enjoy - BUT - don't put it off. Go ! And September is a lovely time of year to be in Sydney, weather just starting to warm up, Aussie spring flowers coming into bloom, my favourites were Fresias.

    May the force be with you.

  • Know what you mean Lingooz, I seem to have lost my confidence re: travel but, if you have all ready bought your ticket then you can make up your mind at the last minute especially if you are feeling ok. Also perhaps put your faith in the medical profession if you become unwell whilst in Sydney. Good luck in what ever decision you make re: seeing your new born granddaughter.

    Kindest regards.

    Phyl.

  • Hi I am on warfarin and nebivolol and a goat of other meds, some of which interact with the warfarin so my dose is 10mgs most days and for one 11mgs. Last Thursday had my inr check and it was 4.1 so slowly reducing it. I had gone back to and I'm now of sick again. I've never been as ill in my life and have resorted to going privately being seen tomorrow by my cardiology. From being and feeling 100% to having no quality of life with what I consider due to medication is horrendous. My symptoms are bruising, gums bleeding badly so much so my tongue is coated with blood in the mornings, fatigue that I've never experienced so bad before. Constant nausea shivering abdominal cramps. I can't go on like this. Hence going privately as my gp is unwilling to change anything. Sorry for the rant but sometimes I wish drs would listen to patients symptoms, think out if the box and understand we are all different. Good luck with your appt and I hope you get your answers too.

  • Hi

    I am 60 and have AF. I work 3 days a week for the NHS as an administrator..but I find it SUCH hard going. I am absolutely exhausted when I get in from work...Throwing a meal together very difficult..so I do sympathize....I have been told it is the beta blocker that makes me tired. Been on warfarin since August 2013, after I had a blood clot in my arm...I get anxious if my INR drops below 2.

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