Raynaulds, AF and HF

[Nomis21]

Hi, in persistent Atrial Fibrillation (cardioversion in 2 weeks) on meds for Heart Failure 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?

[Clangerscat]

miserable being cold isn’t it? I watched Dr Paulings webinar the other week about Raynauds. He said how important it is to keep your core warm and that heated gilets can help. There are a number of websites that sell them including Regatta and Amazon and many of them are rechargeable. Might be worth a try. Take care.

[Nomis21 in reply to Clangerscat]

Hi yes, without giving it much though I bought one a while back, hardly used it as I have a pacemaker and wasn't sure if it would interfere.It's in my wardrobe but bit unsure if the battery or elements within the gilet would affect the PM? So decided not to use it.

Can anyone give advice?

[Clangerscat in reply to Nomis21]

Never even thought about that! Do you have a phone number for specialist nurse with your cardiac team? They might be able to help.

[Castella]

Yes I have been put on bisoprolol (a beta blocker) for atrial fibrillation. This nedication is not usually recommended for SSC people as it is known to make you cold, and it did. Unfortunately the waiting list for the cardiologist is nine months!

[Nomis21 in reply to Castella]

Wow nine months 🤷‍♂️I had a pacemaker upgrade grade 7 weeks ago and received an appointment for a cardioversion 5 weeks after for the procedure to be carried out early December.

[Krazykat26]

Hi there. Sorry to hear you're suffering currently. I have secondary reynauds. Layering is the key for me. You can wear up to four layers..I tend to go for long sleeved thermal top with a fleece top over that..then I have a gilet over the back of my chair if I need extra warmth around my neck and shoulders. Socks I usually wear a thin bamboo sock with an alpaca wool sock over the top. Legs..thermal leggings tucked into bamboo sock..then trousers over the top.I have recently bought some thin fingerless gloves and I can tuck the arms of the thermal top into the gloves. I'm wearing these constantly around the house and my fingers are definitely warmer. When I go out I have bigger gloves over the top of my fingerless ones.

Also think of your gaps where heat escapes. I wear a thinish chemo hat indoors. Tucking sleeves and leggings into socks and fingerless gloves really helps me. I also wear a scarf to keep neck warm..something like a bandana or a buff.

Hot water bottle is my best friend and I have blankets and shawls around the place if I need extra cosiness. I've even considered buying a space blanket a few years ago when I was new to this phenomenon.

[SBQ1971]

Hi , sorry to hear you are suffering so much in this crazy weather, and reaction to your meds. I know once my core gets cold it is really hard to warm up. I have LSSc, Raynaud's and Fibromyalgia + Seghren overlap. (can never spell that) My clothing regime is much the same as Krazykat, layers with thermals to start with, and I like to wear a scarf or woollen neck warmer. Lots of hot drinks if you can, to warm you internally. I have a Hot Roc if I could find it, which can be charged and put in your pocket or gloves and lasts a long time. Never heard of a heated Gilet but that sounds interesting. I have an electric blanket which I do switch off before I get in as it is rather old, but wear socks to keep my feet warm. I think you can get electric blankets now which go over the top of you. Do hope you soon find some relief ,