Heavy arms and legs…

[Heartening]

First time posting. Hello everyone. I was diagnosed with AF in October. It is present all the time - heart rate in 80’s and 90’s. I was aware my heart was racing & I felt tired & uncomfortable. I was immediately put on Apixaban & Bisoprolol. Having started medication my arms & legs became very heavy & my legs especially burn with the effort of walking. It doesn’t just feel like unfitness - it’s like my legs just won’t work properly. I had a cardioversion in January & I was in NSR for a week before it came back. During that week my symptoms did not really improve. I paid to see a private cardiologist as I was unable to get an appointment with my GP or any follow up appointment at the hospital. He suggested changing the bisoprolol for Adizem as he thought my symptoms were probably related to the beta blockers. I did feel a bit better initially, but then I saw a cardiologist at my hospital last week & he doubled the dose to help lower my blood pressure a bit more. & since then I feel worse than ever in terms of aching arms & legs. My worry is - if it’s not the medication causing the problem & not the condition ( having not felt any better in the week following the cardioversion) what could it be? I know you are not all doctors but I realise you all have a lot of experience in this field & wonder if anyone else has had this experience. I should add I feel my life changed the day I got that diagnosis & feel very scared & frightened about my chances of living a normal life again.

[mjames1]

I'd look at the medication first. If the additional dose of calcium channel blocker made you feel worse, then cut back the dose and use a separate drug with less side effects. Frankly, Adizem (Diltiazem) is a lousy blood pressure medication anyway. BTW how much Adizem are you on and is it fast acting or time release?

That said, if you qualify, why not try a daily anti-arrythmic like Flecainde, which hopefully will keep you out of afib altogether. A rhythm control strategy like Flecainide is generally better tolerated than a rate control strategy with beta or calcium channel blockers. Also, you will be in normal rhythm which in and of itself, should make you feel better.

Lastly, you really don't want to remain in afib constantly for too long a time, as it will make future interventions like catheter ablation, less likely to succeed. So again, another point for rhythm control strategy over rate control. Speaking of which, if you prefer a solution without medications, there is catheter ablation.

Jim

[Heartening in reply to mjames1]

Thank you for replying. I’m on 120 mg twice daily - slow release. The plan going forward is for me to start on a drug called Amiodorone which I’ve been told will help to keep me in NSR for long enough to know if I feel better in NSR after another cardioversion. No idea when this will be. Last time I was told an 8 week wait but it was 14 weeks. I can’t get messages to the hospital doctor & GP appointments are usually a 5 week wait. I’m scared to just stop a tablet without a doctors consent.

[mjames1 in reply to Heartening]

240 a day is a lot of diltiazem. I'm on 120 and would not want more. Ask if you qualify for Flecainide. Like Amiodorone, it's an anti-arrythmic, but for most a much better side effect profile. Like I said, diltiazem is a poor drug pressure drug, so if that's why they upped the dose, I would seek a second opinion. I take diltiazem but control my blood pressure with another drug. I hear you about stopping a medication on your own and the wait.

Jim

[CDreamer in reply to Heartening]

What tests did you have prior to cardioversion and what treatment plan was suggested, other than further cardioversion and meds and was the cardiologist you paid to see an EP? (Electrophysiologist specialising in arrythmias).

[Heartening in reply to CDreamer]

Thank you for replying. I had an ECG & echo cardio gram ( the one with the gel - like an ultrasound) & lots of blood tests. I haven’t seen an EP. I am trying to walk a bit each day as I can’t lose weight & feel sure it’s because I spend a lot of time sitting.

[CDreamer]

I’d echo the response above but add that it is also AF on it’s own can make you feel as you describe. Your heart is out of rhythm and therefor not pumping oxygenated blood to your body as well as it should, your heart wants to speed up to compensate but the meds slow your heart down - so that’s a double whammy - your heart wants to speed up to keep up with your body, the meds slow it down. The answer is that you also need to slow down somewhat and adjust.

As a matter of interest - do you ever track your O2 sats?

Hope you can sort out the meds - frankly I have mostly been able to cope with the AF but not the meds.

[Mrsd_uk]

I’m also struggling with feeling tired all the time and your description of heaviness in limbs really rang a bell

It’s very difficult to walk on an incline & stairs are a challenge. Losing weight is impossible!

Found it harder after increase in bisopol in sept… consultant sympathetic but meds keeping me stable while waiting for an ablation …

I’m just upping the walking distance but not the speed - even if I have to have a nap after 🤣

[Fullofheart]

Can relate to that. Stairs and hills are a nightmare...heavy legs and breathlessness!

[Ppiman]

If this began with medication, then that is the area to look at. Amiodarone is a good drug for bringing your heart back to NSR, I gather, but is only safe in low dose and even then needs you and your doctors to monitor it for potential side effects as some can be serious and require stopping. I would be asking my doctor to exhaust other avenues first.

When the heart isn't beating in NSR, and even then if it's beating slightly too quickly or somewhat irregularly, say with palpitations and ectopics, then its output might be lower than your body is used to and symptoms will ensue. It might be worth asking your GP whether an echo or even a cardiac MRI wouldn't be useful?

STeve

[Rainfern]

Dear Heartening, welcome to the AF forum. I was also diagnosed with AF in October last year, and am also in persistent AF with resting heart rate in 80s and 90s. Last September I was all health and fitness and now sometimes drag myself up the stairs.

I haven't yet seen an EP because the initial referral for a holter monitor was made by a registrar who considered the GP surgery would deal with it all! No one has discussed anti-arrythmic drugs with me and I don't trust the GP's knowledge enough to have that conversation with him. I went to a public talk by an EP who convinced me the way forward for getting back to normal synus rhythm is a catheter ablation. He said he'd "give me a buzz" to discuss it, which his secretary told me later was kind hearted but impossible. She described a system in chaos with a massive demand, constant referrals, and currently she is off sick. Apparently one in twenty people who've been hospitalised for covid are turning up with AF.

It is a horrible, scary and confusing condition, so my heartfelt sympathies. The AF society was set up precisely because people get to feel sidelined and left in the dark and without it and this wonderful forum I'd be in despair! I hope it will give you as much hope, determination, advice and companionship as it has given me!

Please remember you are not your Afib. Life goes on, we adapt and it gets less scary 😊

[doodle68]

Hi Heartening, heavy arms and legs can be caused when you are in AF and blood isn't circulating properly and by medication like beta blockers which slow the heart down and can affect circulation.

I am on Nebivolol considered to be a beta blocker with fewer side effects but still get heavy arms and legs and awful feelings of ice cold legs and feet , I also get heavy legs during an episode of AF, well heavy everything really because nothing works properly complete exhaustion and a woolly brain.

[Morzine]

I do feel for you, I was the same, we all were when we first got a diagnosis, we all felt our lives would never be normal again ,but take heart, it will come. The bisiprolol defiantly would be a culprit for he’s y legs that don’t seem to work properly as your description was spot on how my legs felt….however I was lowered in dosage with bisoprolol and thst thrn helped a lot. But I’m never in top gear since.

I agree with the above about flecainade it is a well tolerated anti arythmia drug and I know lots of us take it.

As for hills, well I live in the alps and I’ve said to my cardio only last week I’m struggling with everything being uphill where I live and she did one of those stress tests on a bike and checked my heart and thrn saud heart was fine and beung puffed uphill is a normal thing for me to feel. But yes it’s horrid walking up hill and whst I would say it go slow slow slow….don’t try and keep up with others as it will make you feel worse and I fekt whrn I tried to keep up with my daughter thst I was letting myself down by not keeping up…now I walk at my own pace.

Afib it’s self can make u feel as if you have no energy or ooomph to do anything but once you get the medication settled you will feel much more like you. Please don’t despair, I know I did but it doesn’t help and trust me, brighter days will come

When u get to see a cardiologist again do ask about ablation, mights as well, nothing to loose rh!

Chin up

Sue

[Dollcollector]

The heavy feeling in your legs could be because you are retaining water.

[Heartening]

Thank you for all your replies. Lots to consider. After I had the Cardioversion I was expecting to feel so much better & when I didn’t I assumed it was the bisoprolol causing the aches & heaviness. So when I switched to Adizem I was fully expecting to be feeling better & I’m massively disappointed that I don’t. I was told I will only be on Amiodarone long enough to see if I feel better in NSR & if I do will be a candidate for an ablation. All the waiting & being unable to get advice from doctors without paying extra is very worrying. Thank you to all for your positive words tho.

[JOY2THEWORLD49]

Hi

Adizem is it a CCB?

Diltiazem is a CCB so I thought it in that list.

After walking or on elevation I get 'jelly legs'.

Dr told me the oxygen is not getting around your body esecially extremities fast enough.

I also have an enlarged Left chamber.

I am on Bisoprolol but only 2.5 at night. It isn't that. As I had it before the stroke and I had Bisoprolol, Worse on Metroprolol.

I feel it is the AF as it has improved in CONTROLLED AF.

No ablation (Can't have) or cardiversion.

I also improved taking PRADAXA (anti.co.agulation) down from 150mg x twice to 110mg x twice.

Try changing items around. I declined statins. Are you on statins?

cheri JOY. 74. (NZ)