Hi, in persistent AF (cardioversion in 2 weeks) on meds for HF and suffer from Raynaud's.So cold presently and find it really difficult to keep warm, hands and feet suffer mainly and are cold as ice but feel it throughout my body, think the meds are making things worse (bisoprolol, dapagaflozin, ramipril, apixaban)
The only way I find I can get heat in my body is by having a warm bath which is often twice a day.
Just ordered a new electric blanket, heated socks and rechargeable hand warmers.
Anyone else suffering? Any tips? Anyone know if there is any meds to treat?
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Nomis21
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I’ve in the same position, it’s a nightmare having to deal with the cold hands and feet, I’m very altletic in build so don’t carry a lot of body fat to insulate my body from the cold, like you I think that the Apixiban is making this worse especially at this time of year but have no opinion than to continue taking them.
TBH There’s not really much more than your doing, but the heated socks and gloves make a real difference, maybe try a thermal base layer.
I’ve been on Amiedrone for almost 2 weeks now and it appears that it has been successful in returning me to sinus rhythm just hope it doesn’t come back once I stop taking it!
yeah going through a hard time at the minute, affecting my sleep (been up since 2:30am) with being cold and in persistent AF which is really knocking chunks out of me.Was at the docs yesterday and he said that the bisoprolol has side effects that make extremities cold which isn't helping having Raynaud's but said there is medication that could help but was reluctant to prescribe any at the minute due to me having a cardioversion soon being in heart failure and having a recent pacemaker upgrade 7 weeks ago.
I was taking Amiodarone for a while but it affected my thyroid, it's since has been mentioned again as an option for the AF but reluctant to start it again, hopefully the upcoming cardioversion will help/resolve the AF.
I find once I'm cold I can't get warm even in the summer months or when the house is warm, hands, feet, nose are like ice and I shiver, warm bath helps but this often makes my AF worse for some reason, maybe a change in body temperature?
Off work at present but find it really hard to support my role with the health issues and being so cold, not easy!
Took the plunge this morning and ordered the electric blanket, hand warmers and heated socks hoping it will ease the burden.
Everything you mentioned I can relate to with the broken sleep, I have no problem going to sleep at bedtime but sometimes I wake up like you at 2.30am and lie for ages trying to get back to sleep getting myself worked up cause I’m not able to.
Thankfully I’m also off work, so manage to get some hours mid afternoon to recharge.
I had a heart attack 2 years ago, so I’ve been on bisporol and rampril since then along with a statin and always been bothered by the cold, think I might have been born in the wrong country as I’m more suited to sunnier climates rather than Scotland!
Maybe possible that you could be prescribed Dronedaron instead of the ameiderone which is a less toxic drug but suppose your Dr maybe have considered that option?
I’m also booked in for a cardio version but now I’m back into sinus I won’t need it, I’m just concerned that the Af may return if I stop the Ameiderone as it’s not a long term solution, but I’ll ask about the Dronedaron to see if that could be considered as a long term alternative.
Sleep deprivation is my nemesis, like you fall asleep within 10 minutes of head hitting pillow but I'm a light sleeper and always wake up very early morning either cold or needing the loo, never do I get the opportunity to sleep past 4am, once I'm awake I find it impossible to get back to sleep so I just get up rather than fighting against it, while I'm off work I will go back at 7-8am and sleep for another HR.I'm in the north lake District, (Cumbria) so like you probably not the best place to live for dry hotter weather, I only need to come into contact with cold air and that's me done, freezing until I get a warm bath.
Going to mention dronedarone to my Ep if in the future I needed to take more meds if the cardioversion is unsuccessful, thanks for letting me know there's an alternative to Amiodarone.
I find that if I listen to some music it distracts my mind from not sleeping, I have from Amazon a blue-tooth eye mask that has speakers built into it and I listen to some calming music, see if that helps you nod off again as it does help me.
I also feel the cold terribly. Hands & feet etc. My daughter has underfloor heating & such bliss when we visit in Winter. Never cold feet when I’m there with slippers on too! Sounds like all bases have covered. Thermals, and an electric throw when sitting in the evening. Sometimes I make a hottie as well!
My daughter bought me an electric throw one Christmas. Using that when I'm sitting I know I'll never ever feel cold again, have to turn it down once I'm warmed through. Now that my central heating is on I haven't used it quite as much, but like everyone else I'm cautious with how much the heating is going to cost this winter. I also bought myself a lovely super thick fleecy dressing gown in an M&S sale a few years ago - hate the cold. Oh yes I have some fleecy night wear too and some bed socks.
It sounds like you're doing the right thing. Is your electric blanket for your bed or is it a throw for use when out of bed?
Hi Jean I have an electric blanket but it's old so just treated myself to a dual controller and zoned areas which can heat top body half or lower feet half independently as my partner prefers a cold bed on her side most of the time.Have two log burners which helps to lower the usage of central heating again like many others conscious of gas price costs.
In addition to the rechargeable hand warmers and socks I've invested in a couple of thermal base layers.
Obviously having to take the meds for HF and AF isn't helping me keep warm, but I'm fighting back to beat the cold with the help of Amazon even if my wallet is getting lighter 😕
Never leave your electric blanket once in bed! The weight f you makes it risky.
But thermal singlets short and long sleeves.
Onesies work but one gets cold going to the loo.
Actually warm shower and then cool shower warms one up.
A hoody makes all the difference and a woollen hat and gloves.
Wool is better. I have a slat bed and never get cold in bed - I dn't need an electric blanket.
Put the heater on 1 hour before going to bed then turn off - it stops condensation. I use the heated towel rail in the bathrooms as wooden walls - no cavity - absob the heat.
Its no good being cold, a ht milky cocoa drink wil send you to sleep.
Is your thyroid issue being treated? I know it will be the last thing you feel like but are you moving about regularly? The BHF has two sets of chair exercises which I do because my hip doesn’t want to take my (light) weight any more. In the exercise class I attend we do hand and foot exercises to improve circulation.
In theory you should not be affected by your AF as you have had an AV node ablation but I guess you are one of the unlucky few still conscious of what your atria are doing. I hope the cardioversion is successful.
Hi I was referred to Endocrinology last year due to my thyroid tests showing over active thyroid, had to have a thyroid scan then got tested again the results were still showing it was over active, eventually on third test it came close to being back in range, the consultant said it was probably the Amiodarone that I had previously been taking that caused the issue, never had an appointment to go back Endocrinology since so guessing there's no problem now 🤷♂️
Probably I was the last to learn that extra layers on your body to keep it toasty warm stops it dragging heat from the extremities to protect the essential organs. Still get cold hands & sometimes feet but Raynaud's not as bad.
For the insomnia - it is best not to lie there "trying to sleep". Get up and read for a while until eyes start drooping before going back to bed. The bedroom should be free of all electronic devices and be completely dark. From a chronic insomnia sufferer!
Your not alone my friend,this cold weather can be a killer, I find it's best to keep moving and working if possible, ,and think of those hot days in the summer and when they come make the most of them.
hi I have raynaurds but not as bad ascyou but after being diagnosed with AF was put on bisoperol and apixiban my fingers used to be blue that cold but after they changed my bisoperol to verapamil as bisoperol made my asthma worse my raynards improved dramatically so I now take verapamil and apixoban with no issues
My husband has just had his Bisoprolol reduced because of the white cold hands and feet as it is a side effect and can worsen Raynauds apparently so if you are on that ask about an alternative.
oh dear both my husband snd I have pacemakers and we were told amongst other things (not to keep mobile phone on top pocket near heart/pacemaker, induction hob etc) NEVER to use an electric blanket obviously perhaps put it on before go to bed but make sure unplugged before you get in
I think it is more the bisoprolol that is making your cold hands and feet worse plus of course the Raynauds
I do hope you feel better and that the cardioversion goes well
Lot of interesting tips to keep warm, really appreciate the responses 👍Just a couple of questions should anyone be able to give advice.
• Those that have pacemakers, do you use an electric blanket? States on the BHF website that electric blankets are safe to use but if in doubt speak to pacing clinic or manufactures to confirm, same applies for heated gilets that have elements and uses a portable battery pack, has anyone had confirmation from manufactures or the pacing clinic that these are safe to use?
,• Probably posting this in the wrong forum but here goes, I had a visual diagnosis by the gp of raynaulds last year after years of suffering from coldness which make my hands turn purple and fingers white along with my body being Baltic cold to the point of uncontrollable shivering, I also feel cold quite often in the summer months, I've often wondered if there is a specific test that should be done to confirm? Anyone know?
I find the electric throw great..because I believe extremities get very cold because core body is preserving heat for essentials so get your central body warm and the chances of cold extremities is reduced a lot. I can some times try warming hands fingers up and they appear warm to touch but still numb..because blood still not getting through because Central body still feeling the cold or rather brain!
As to your question about a specific test for Reynaud's, I just read an interesting reply on the free version of ChatGPT. It's not appropriate to quote from this information source on this Forum, but I think you might also find the information returned helpful. You would just need to download the free App first. (PS. I have no financial interest in ChatGPT)
the only meds I’ve heard of is Co enzyme Q10 given for Raynaud’s , but ask your cardiologist as it’s not always recommended with blood thinners or anticoagulants. Thermal underwear is now a must for me plus hand warmers , wool lined slippers and bed socks. Get in touch with Raynaud’s society as they can help.
Been on beta blockers for years (metoprolol first, now sotalol for A-Fib)....hands and feet always cold (lots of thin cheap black cotton gloves), big on sweaters, heated mattress pad. Feel your pain, but no Raynaud's.
Yes - I have persistent Afib, possibly heart failure lab results and Raynauds. After many years of being so hot through meopause, my hands are icy, especially in the evening. Gloves are a must going outside. The only medication that I see that matches yours is Apixiban. I also take meds Diltiazem and Ciprizil, as well as anti-seizure medications Dilantin and Clobazam but have been on the anti seizure meds for many years, so I doubt they are the culprits. I have found that since taking Apixiban that my long thick hair has shortened and thinned noticeably. I don't know if you are also having this problem. I use a heating pad at night, and a heated blanket when necessary (in Rocky Mountains, Alberta, Canada, so winters can be frigid, but have also been in Scottish Highlands during the winter - a different type of cold - dry in Alberta versus humid in Scotland).
First snow day, here in the US North East . I am on sotalol and xarelto afib only 2% of the time. I only get cold extremities in the winter. What helps me the most is to be physically active(I understand not every one can be active). On my days off, I walk 15000 to 20000 steps, cook a lot and swim, my extremities are not cold! When I work, I am mostly sedentary, I get cold and mumb finger tips while driving home in the winter. I stop at the pool to swim and then I am fine again. I swim daily for about 6 lapses and walk 10000 steps minimum. I feel for you being afib, I hope it helps.
Sorry you're having problems with the cold. Sympathise as I suffer badly. I have a heated gilet which is very helpful. Has a battery so you can recharge. They're brilliant. Good luck
I see several suggestions of changing to calcium channel blocker - have you tried that? Not sure what the bisoprolol is supposed to be doing if you have the AV node ablation and the fancy pacemaker? BP? Ah, HF 😕
I suffered from wolff Parkinson white syndrome, I was offered an ablation however the pathway that was causing the problem was very close to my AV node and it was high risk that the AV node would be ablated in the process, I went ahead with the procedure and the AV node was ablated unfortunately and I needed a 2 lead pacemaker, 2 years later I was diagnosed with heart failure due to pacing induced cardiomyopathy of the left ventricle, this lead onto me having a CRT pacemaker upgrade or as you call it a fancy pacemaker.I have been in persistent AF for roughly 2 years since the first pacemaker insertion.
I was prescribed bisoprolol, dapagaflozin, ramipril and apixaban when I was diagnosed with Heart failure along with AF.
My mum has the same triple whammy. She describes the cold in the same way as feeling it right through the body. She wears gloves indoors mostly and has had some finger necrosis before (frostbite really). Things improved when she saw the Rheumatologist who did the blood test to prove it was Secondary Raynauds. Then she has had annual iloprost since, that means less time with gloves on indoors , and Rheumatology worked with cardiology as some of the heart drugs were making it worse. She was taken off verapamil and given Angitil SR instead, which helps with both the AF and Raynauds. However, all the heart drugs do seem to cause some Raynauds symptoms it a question of how badly. I'd suggest you do see the Rheumatologist again if you can, the issue with Raynauds is no-one realises how bad it can get and think it's just feeling cold. But I know it's a fine line from cold to pain (and as it happens slowly sufferers get used to it) The GP was a bit out of their depth so she was under the community cardiac nurses supervision while she adjusted to the new meds. Mum's cocktail is now spironolactone, angitil, bumetanide and apixaban. Good luck and wrap up warm xxx
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