AF ...... I am told ......... but.....

[Keibval]

Hello everyone , my name is Kay. I am 68 and was diagnosed with AF about three years ago. Having been very fit and active all my life this condition has come as a shock as I find myself so debilitated by it.

I am told that my medication is doing it’s job , that things are ‘ under control’ BUT here’s the thing ! I cannot walk anywhere near a normal strolling pace ....I cannot walk more than about 10 metres without the support of two sticks or a “wheeled granny stroller” which when I do walk with it , I HAVE to sit down every minute or two to regain my breath and my energy before I continue!

I have been doing some sitting pilates , some sitting and standing tai chi for several months now and gaining marginal amounts of progress from this .

I really want to be able to return to skiing with my family and friends but right now if I cannot sustain a gentle walk then what hope is there ?

My big question is ........does anyone else find that even the simplest of tasks , like taking a shower, drying your hair or just standing to cook a meal is bordering on impossible ??????? It is SO DARNED FRUSTRATING! and it feels like no one is listening when I explain the immediate onset of upper back pain when I attempt to do anything, but as soon as I stop and sit ...the pain just goes with ing a few seconds !!! Is it to do with the AF or is perhaps something else ....has anyone out there experienced this almost immediate onset of exhaustion and tension in their backs????

[Peony4575]

May I ask what drugs you are on .

[Keibval in reply to Peony4575]

Flecanaide, atorvastatin, indapimide,levothyroxin, fexofenadine ,apaxiban

[Love101cats]

Its complicated! I have AF as well,as kidney failure and underactive thyroid. I have terrible back pain when I try to walk or do any simple jobs but the pain goes immediately I sit down. In my case it was fluid retention in my back. I kept waiting for my feet and ankles to swell but they didn't and was so surprised when my cardiologist told me I had fluid on my back. It seems the fluid find any gap to fill. Im not saying that may be your problem but only that AF makes a tremendous difference to your capabilities and it takes a lot of time to work out the implications.

[Keibval in reply to Love101cats]

That’s sounds exactly what I get ! My ankles don’t swell either ...only if I travel long distances sitting but even then not terribly .......but the sudden onset of pain in the upper rear chest cavity is dreadful . Thank you for sharing that with me ....at least it gives me some hope and reassurance that I am not just being ridiculous and that someone else has the same symptoms! We’re you given any hopes of how to make it less painful or how to deal with it ? Have they given you any fluid reducing tablets to help drain excess fluid ?

[Love100cats in reply to Keibval]

I was already on diuretics but the body seems to build resistance after a while so I was changed to Bumetanide x 4 daily. But even now at times the fluid builds up. Usually due to not drinking enough. The h.f. nurses trust me to take 1 tablet extra when I'm in extreme discomfort but I dont make a habit of it. I have found with chronic illness you need to take time to create a new life style. It needs to include an eating plan, sleeping plan, resting plan, recreation plan,etc. When you've hit the jackpot and its all working smoothly then keep it going. Your heart will thank you hopefully by behaving itself. My diet is nothing like it was before but it is a pattern of eating that both my heart and kidneys are happy with so thats it! You are in the control seat!

[Keibval in reply to Love100cats]

I recently had sepsis in my artificial knee joint which had to be debrided and partially replaced ......major input of massively strong antibiotics over 13 weeks .......but fully recovered from that albeit the antibiotics have left a legacy that apparently will take about a full year to dissipate..........so that was amazing, and I thought I would soon be back to “ normal” and all would be good .

During the blood testing they said my kidneys were failing and I was due to have a biopsy done in November last year....but on the morning of the proposed surgery the consultant appeared and said my kidney levels were back to near normal and I wouldn’t need the biopsy after all ! I am due to see him in a few weeks time for a follow up ....so maybe he is is the best person to talk to about fluid retention eh???

I have a pretty healthy diet ........rarely bother with cakes or desserts ...

Eat plenty of fruit and vegetables and salads, I don’t particularly enjoy alcohol....maybe a glass of G&T once a week and sometimes a glass of wine ( literally a glass!) .

So what sort of diet are we talking about ?

I have a measuring drinks bottle which stays beside me wherever I go drinking during the day ....just plain water

I have to tell you it has already given me hope just getting a response from someone who seems to have the same or very similar symptoms to me .....I was beginning to feel So isolated and wondered why when I keep saying about the pain in my back , no one seemed to hear it ! Did they think I was just being stupid or making it up ???

[Love101cats in reply to Keibval]

I wonder why they ignore things like pain as if its not part of their job description. Fluid retention can be due to kidneys as well as heart but remember the kidneys depend on the heart and not the other way round so focus on your heart. Dont think of diets but eating plans. Try to have a system where you know what you have, when you have it and its good for you. I no longer eat red meat, no salt at all, I space out my meals, eat off small plates and home cook most things. I keep it simple. That way I avoid panic moments and also don't spend hours I the kitchen. Once my meals are sorted I can plan what I want to do with my days.

[Keibval in reply to Love101cats]

That’s all good ....thank you. I haven’t added salt to meals for years ....used to tell my mum off for adding far too much but she did manage to live into her 89 th year pretty healthily!

Don’t do takeaways and we also cook healthily ...never have fried foods ...... rarely have cake ........am partial to a biscuit with first cuppa tea tho😌.......hate anything even slightly fatty and have lost weight recently as my appetite is diminishing. Planning ahead is a great idea ...... up until this last year I have done all the cooking but since this pain got so bad in my upper back and I cannot actually stay upright for long enough ....my husband has found his inner chef and has cooking us lovely meals ! Bless him !

I am so grateful to you for sharing this with me ....you have no idea how my spirits lifted last evening when I got your response ! I was very much down in the doldrums and as someone who is known for always smiling and having a positive approach to everything suddenly seeing how similar our symptoms are was like the sun rising up in the beautiful sky .👍💐🤝🤛👌

[Love101cats in reply to Keibval]

You are welcome! Living with chronic illness is so hard and I found the support given on this website much more helpful than doctors or nurses who haven't been through it. So ask away! I have a scan next Tuesday and ECG and checkup Wednesday so hopefully something is in the pipeline. How lovely to have your husband helping you. I lost mine to hf and dementia just over a year ago.,

[Keibval in reply to Love101cats]

Oh that’s so sad ........ can’t begin to Imagine how that feels......hopefully you have family around to support you ( under normal circumstances) . I did nurse my mum through her dementia though until she died 3 years ago ...... very difficult times for everyone! All the stress involved causes so many repercussions for the carers and the family eh? In fact I am convinced it was stress that triggered my AF ......

But as remind myself often ...I woke up today !!!! Better than the alternative 😌

[Keibval in reply to Love101cats]

Meant to say good luck with you upcoming appointment .....and scan 👍

[lilymeg]

You sound like me ! No strength, no energy and panting easily within a few minutes or less. I have paroxysmal AT but that has all been checked. I have COPD and that has all been checked too. My next port of call is my endocrinologist because I had a thyroidectomy in 2003 and have been on thyroxin ever since, mostly without problems. I notice that you are on thyroxin so may I suggest that you ask an endocrinologist to check you out. I always write down my problems, then I hand it over and let them cogitate and get the full picture. Simpler than having a mental block or getting off track. Stay safe and be happy.

[Keibval in reply to lilymeg]

Thank you .......sorry to hear how you are feeling so worn out too.......I am seeing the endocrinologist on the 18th this month and yes ....I too always write things down so we don’t miss anything ......but somehow it seems they never really address the one thing i most need them to . But now that love 101cats has confirmed almost exactly the same symptoms and problems as I have , I no longer feel that just “ mentioning” the back pain is incidental and I absolutely am going to make it my foremost concern that needs addressing!

It is just good to know you are not the only person with these symptoms !

I was beginning to think I would never get to the bottom of it and that the rest of my life would just be endless struggling and feeling stupid and helpless! Now there is at least a reason for what is happening and potentially a semi solution to treating it more efficiently.

[Jessiebrown in reply to Keibval]

Hi I have been reading your posts and replies with interest,what kind of pain do you get in your back? mine is like a dreadful burning as if someone is putting a red hot iron on it ,I have told the doc and they say it’s probably muscular!! I have AF and had ohs 2 years ago but my breathing and energy is worse than before I had surgery.

a lot os your symptoms sound similar to mine,I can’t get. any answers,my Dr

said he was going to refer me to an endocrinologist but that was weeks ago and I have not heard anything,I have pains up my neck and jaw and my chest feels so tight,but when I go to the dr all my tests ecg etc all come back normal,

I hope you soon feel betterx

[Keibval in reply to Jessiebrown]

Good morning Jesse ........isn’t it soooooo frustrating that you don’t feel listened to ???!! Clearly everyone has a different way of describing pain and everyone has different thresholds of pain tolerance . Maybe what we really need to do is become much more assertive when we see our specialists and keep bringing the focus back to “ the dreadful pain” we feel. I have now reached an impasse whereby I have accepted their clinical decisions and I take my meds properly , I do ask they instruct me like try and lose weight , eat sensibly , cut down on salt , drink plenty of water etc etc etc .....

But all of these have not addressed the actual pain in my back which I have tolerated now for at least three of the four years ....

My description of the pain is ......when I get up and begin to attempt to do anything like , make my bed , with a minute I feel like the whole of the rear of my chest is about to go into spasm under pressure and tight and is so powerful it makes me feel like I am going to collapse unless I can hold on to something, which helps ...but like I need to sit down ......which immediately brings it under control and I can breathe again. As soon as I go from upright to sitting , the relief is massive .

But, is is never addressed by the consultant!

I need to sit for a good few minutes before attempting to return to whatever it was that I was doing. Sometimes I have to just stop trying to complete what I was doing .

Yesterday it took me all afternoon to sweep and steam clean my bathroom floor what with having to keep stopping ( I find the action of sweeping very difficult) and sitting after every action: ie lift out the shower mats and the bathroom scales ........sit down .........move out the basket drawers into the hall and the loo brush container and the little bin ....sit down ..........fetch the steam cleaner and the brush ......sit down

Took,me 3 separate attempts to finish sweeping the floor ...and so on and so on .....it drives me nuts !!! And every sit down is as a result of sheer exhaustion trying to deal with that pain !!!

Goodness ....that was a long answer !!!! Hope it gives an idea of my feeling ....it does kind of spread like you would watch a fire burst from embers into flames but I wouldn’t describe it a hot .....

[lilymeg]

Glad you are feeling more positive - go for it , half the battle is not giving up 😊