diagnosed approx 6-7 years ago with A-FIB …..had 2 cardioversions and an ablation which lasted about 12 months . Been in paroxysmal now for around two years and definitely know that stress can be a major trigger . .. ( a death in the family triggered the return to AF ! )
What I don’t understand is why every day is such a struggle to complete any task that requires being on my feet , cooking , showering , standing for more than a few minutes and walking has become incredibly restricted to no more than about 20 steps before I have to stop and sit ! Breathlessness and point of collapse basically .
Until just before the pandemic I was heading off to ski in Austria …..all my adult life maintained a good level of activities and fitness ……and now every single day is one struggle to another and sitting down has become the only relief I get ! I tell the specialist’s my symptoms as well as my GP but it seems to fall on deaf ears . I don’t know if I am a “ one off “ with my level of incapacitation , or if there are others who struggle as much as I do ? Apart from this affliction , I enjoy very good health ( even contracted a dose of covid and had absolutely NO symptoms !!!)
I have had to resort to a mobility scooter for getting out and about and if not attempting to go too far , I also have a rollator/ Walker / pusher thing for stability and support .
Does ANYONE feel the same ? I don’t know what else to do or say or ask my doctors etc to try and improve my day to day quality of life .
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Keibval
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I remember feeling just like you, at one point I could barely walk from the kitchen to lounge. I had been in hospital with a high heart rate, then been discharged with a rate between 120-130 to await a cardioversion, that took over 6 weeks. It was a hellish time in my life which I will never forget. What I didn't realise was my thyroid had been damaged because of taking the drug Amiodarone, so it was now underactive. My GP knew this but was hoping it would go back to normal in time, he didn't tell me though. Another consultant I saw at hospital who asked for a blood test, rang my GP's surgery said I needed to go on medication immediately. Doing that gave me my energy back
Have you had your thyroid tested, or ever taken Amiodarone?
Thank you for your response Jean, yes I was initially on amioderone for a couple of years and later changed to Flecanide ……..and now back on amioderone !!! I was diagnosed with an under active thyroid and now take medication to balance that out . I had side effects with both amioderone and flecanide and it’s been a problem trying to find which one causes the least trouble. It is just somewhat reassuring to know that my symptoms have actually been experienced by someone else , as it is so blinking debilitating, but til your reply , I began to wonder if anyone would believe me and or if people think I was just “ putting it on”!!!!!!
I honestly thought everyone with AF felt so tired. I would have some energy mornings, but once I used up my small allowance of that, well I felt so drained that I often slept. Are you taking Levothyroxine and if so what dose?
Hi there, Amiodarone is notorious for knocking out thyroid function. This happened to my brother and he still doesn’t have his previous level of energy (he used to be an ardent hill walker). He was totally debilitated for several months until he came off Amiodarone and was treated appropriately.
HiSorry to hear about your worries. So the Amiodarone is not really working if you still getting Afib? How big is your dose?
I'm taking it for 3 months following an RF ablation where my heart went " bonkers" after so probably hasn't worked. But Amiodarone works very well so far with no Afib. But if you were on it before perhaps over time it becmes less effective. Are you taking beta-blockers - maybe that is what is exhausting you?
I too feel like you but I have been in constant afib/aflutter/arrhythmia for the past 4+ months since getting covid at Easter. I have ecgs every 2 -3 weeks and each ecg I have throws up a different arrhythmia! I have been through a selection of meds, (now on digoxin and Tildiem LA) and was initially told I couldn't have a second ablation until my bicuspid aortic valve replacement/aortic repair operation needs doing and they would throw in a surgical ablation at that time.
A follow up appt was due in December but following my echo last week I received a letter with a telephone appt for next month (with no reason why it has been brought forward).
I know my circumstances are a little different from you but yes, I do feel the same incapacitation as you - unable to stand for long or walk very far, heart rate racing and a feeling of someone standing on my chest, an overwhelming feeling of 'being ill' and the need to sit down. When the nurse/hca/doctor etc glibby greets me with "Hello, how are you" my reply now is "wretched".
That sounds unbearable. That is a long time to be in such a high sustained rate no wonder you are exhausted. I was in afib/aflutter following my RF ablation for one week at rates of 160 bpm which was nerve wracking.
I have temporarily been put on Amiodarone which has kept me in NSR for the last 4 weeks. It's a dreadful drug but quite honestly I would've eaten a tin of dog food if they had said it would put me back in normal rhythm 🙂
Glad they have brought your appointement forward. I wish you all the best.Take care
A bit late now, but there were reports for and against Vax and heart conditions. The gov. of the day etc, recommended vax, but this may be the cause of the upsurge in heart problems. I say "may be", may be not as well.
Last vaccination Nov 2021, caught covid April 2022. Covid infection kicked off arrhythmias. Make what you will of it, the medical profession can't figure it out yet! I wouldn't have known I had covid except that someone else in my house tested +ve so I did a test too.
My vacs didn’t cause me any problems and same as you , I had no idea I had contracted covid but did a random test after some family members said they had it …..and yes I tested positive but absolutely no symptoms !?
I have had periods on and off in the past 6 years, since AF came to town, where I have been extremely fatigued and exhausted, particularly between new year and when I had my last DCCV in April. I have a valve issue as well but the AF was causing about 90% of the issue.I had exhausted periods prior to vaccination so it was nothing to do with that.
Oh my goodness ….. you have been going through ‘the mill’ for sure ……bless you ! I can certainly relate to your last paragraph, that is me to a ‘T’. But there are obviously more difficulties going on for you and hopefully some solutions to be gained from your upcoming surgery. I do hope it all goes really perfectly and that you can get back to some sort of normality soon which sounds very likely with an earlier appointment . You will have to let us know on here after your recovery how you are doing 💕
Oops …I thought this message had disappeared so rewrote another one as follows !!!!! Sorry for repeating myself ………but thanks for your support ….it is just interesting to hear that there are other folk who have the same amount of debilitation as yourself because reading things over the last year or so on here , I was under the impression that everyone pretty was ‘ under control’ and many were continuing their previous levels of activity after their treatments . 🤭
Goodness me , I could have written that last sentence word for word ! Except for the wretched bit !!! That’s the way forward for me I think , I was to.d by a nurse a few years ago that I smiled so much and was such a happy person that it belies the pain I was going through ….she said I need to say it as it is to get doctors to believe me !!! Eg. I snapped ( yes completely snapped ) my anterior cruciate ligament playing netball some years ago and my doctor just wrapped it up with elasticated bandage and didn’t even bother sending me for an X-ray…..even though I told him I thought I had broken my leg as there was a really loud cracking noise . Hobbled about for another year falling many times a day , dislocating my knee in the process regularly ….megga painfully at times . Then finally realised that I couldn’t continue the rest of my life like this as I had always played sport and was now putting on weight …..something needed to be done . Finally insisted on seeing a consultant who was horrified and didn’t know how I had continued walking on it for so long …. There was no cartilage left to repair as it had all shrivelled up and retracted long since , so had a MacIntosh repair done to replace cartilage with ligament . I learned to ski a couple of years later and achieved a silver standard wearing a knee brace of course . Maybe I need to tell them how wretched I actually feel too !!!!
I sympathise with you. I’ve been in Af /afl since the 13 June now and even walking up the stairs is difficult sometimes. I go clammy and feel like there’s a weight on my chest once this starts even if I rest for a few minutes and it appears to pass as soon as I resume walking it returns. The walk to our local which is two minutes away can take up to 10 minutes. I can’t suggest anything to ease it, sorry but your not alone. I just hope my trip to Sheffield for my hybrid convergent mini maze comes soon.
Yesterday i walked up to the bridge at the top of our road which is about 600 yards away using my pusher (walking support ) and sat for a few minutes ( no more than 5) then walked back home …..it took just over an hour ………absolutely exhausted and sweat dripping down from my head and body everywhere. I huff and puff every step of the way and battle not to keep stopping and sitting as I want to keep moving to aid losing a little weight …….which due to immobility has been creeping up! Aaaaargh !
Please don’t be offended but you don’t lose weight through exercise, the only way to go is eat less fattening stuff. A Mediterranean diet is the best provided you eat wholegrains if you can - they fill you up and move things along quicker. I can’t eat wholegrains due to bowel probs so cut down on sugar and bread and very slowly lost weight which is the best way as it doesn’t panic your body into thinking you are starving. The Fast 8 diet is supposed to be great if you have the will power but as you are already weak probably not for you.
If I were as disabled as you are I’d be kicking up as much fuss as I was able. An article I read recently suggested that the best way to get proper attention from doctors is to keep a diary. Your description of your walk should be the first entry.
Yes you are right about diet …….but I eat pretty healthily already and enjoy cooking (albeit usually having to sit ) and very very rarely have takeaways . Don’t buy cakes and only bother with puds if we have visitors …..love all fresh veg and salads , mostly eat chicken and fish but I will admit to a couple of ginger biscuits first thing with my morning wake-up cup of tea ! My appetite has reduced substantially in the last year or so , often cannot finish my plate ( and no, I don’t stack it high!) I cannot eat a normal portion of rice or pasta as I find it too much , and I hate fatty foods . Love all fresh fruit and drink mostly water as I don’t like sweetened drinks ,not even keen on squash and as for alcohol , I have never been keen on more than one small glass of shandy or the occasional Friday night gin and tonic . We only buy sweeties if we are going on a long journey ,usually Murray mints …..it seems I need to get my jaw wired perhaps 🥹😵💫
Thank you……let’s keep positive and hope things can be resolved to a degree of …” this is now something I can live with more comfortably “ . I know it is never going to just disappear and I constantly remind myself that there are people in situations far worse than mine and I should be grateful for the life I have !😌
Not so fast. Have you looked into the side effects of vac and heart disease and other ailments? If you positively have looked into the vac, well and good. Don't top up just because everyone else is. Everyone else doesn't have your heart condition.
Hi Keibval have you had your thyroid bloods checked recently? Some heart drugs can affect the absorption of levothyroxin as well as affecting the dose you need. Once a year is not frequent enough especially with your symptoms. Having too much or too little levothryoxine can give you awful symptoms.
As you are on Amiodarone which affects your thyroid they should be. Hopefully also checking lungs because Amiodarone can affect them too. I think you should read the entry for Amiodarone in the BNF, as your doctors aren’t trying hard enough it might give you a clue.
Has Pace and Ablate been suggested? Alternatively you might like to read the posts about the various types of Maze procedures by MummyLuv and others.
I’m thinking that instead of the AF, is your thyroid a contributory cause even if you think not; or might it be sleep apnoea that is the cause?
I’ve read that some people do suffer much worse from AF than others as their ventricles aren’t so able (often for unknown reasons) to “suck” the blood down from the atria (which have stopped pumping it down owing to AF).
Wow ………this is the most and best information I have ever had from so many people ! I am definitely going to revisit the thyroid issues and contact my consultant with my persistent AF symptoms .
THANK YOU ALL ABOVE WHO HAVE CONTRIBUTED….I FEEL INSPIRED AND HOPEFUL 👍🤗. You are all amazing !
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