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Rank: Member  Groups: Registered
Joined: 9/15/2012 Posts: 18
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Hi there
In the last few days my toes feel as if someone is pouring icy cold water over them, it's a really strange sensation. Is this a normal part of RA? Is it the drugs? Or just something else? It seems weird to have gone from burning hot feet to icy cold. Anybody experienced anything similar?
Thanks
Katie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Depends what meds you are on? There are problems with cold extremities sometimes and this can lead to something called Reynards Can you ring the nurse specialist for some advice? Jenni how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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hi katie,i am a sufferer of raynauds and boy do i know,the feeling is horrible,it is when the circulation goes from the toes and fingers and sometime the tip of the nose/ears, i have had this for years but the only advice i get from gp etc is to wrap up and keep digits warm,i now have finger less gloves i put on along with my dressing gown first thing plus good warm slippers and i use said gloves all day unless i get too hot,keep a warm cardi or body warmer handy,hat for outdoors as forehead chills as well, i am sure it is to do with the meds,i am getting more and more of it now the really cold weather is here,please be very aware when you have got the white digits as you can hurt yourelf badly as not alot of feeling if any,this also apllies to heating them up you can be burned on a cup of tea,ive done it,get it confirmed by gp or nurses as it should go on your records for future reference ie claims forms etc,i have a lavender heat bear it goes in the micro best thing ever just right to cuddle, all the best,dorothy
keep ankles warm as they can make feet cold.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 242
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Hi Katie
I have always had cold feet with R.A and I don't have raynauds. If you are lacking in iron this can make you feel colder, I believe the combination of the disease and medication affects our whole circulation. If you are sitting alot it's important to do a bit of gentle exercise to keep the blood flowing in the legs and feet. I have found heat holder socks fantastic at keeping my feet warmer, they are so cosy and warm.
Hope this helps. Best wishes Rebecca
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Rank: Member  Groups: Registered
Joined: 9/15/2012 Posts: 18
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Thank you everyone for this advice and information, it is so very useful. It's a good idea to speak to the rheumatology nurse and I'll ring her or email her. You're right I am sitting a lot more than I would do normally so I will try doing some exercises and wiggling my toes to keep the circulation moving. If I only I didn't feel so exhausted all the time I could do some more exercise. Love Katie
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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rebbecca, what are heat holder socks and where to buy please,sounds good to me,dorothy
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 hello everyone. Sadly I have cold hands & feet as well. Something I've had before ra - when I first met my husband I used to pop my feet on his back just as he was nodding off!! Couldn't bend my knees and try that now! Instead I place my hands on his cheeks (on his face)!!  or on his neck to prove I feel cold!  I use soft stretchy socks which are easy to put on, lidels sell them or supermarkets do (they have to totes grip things so you don't slide). The totes brand I can't get on because the are tight and a fitted product - don't offer flexibility. I put the soft stretchy them on my hands at bedtime after creaming my hands with diprobase(prescription for dry skin) keeps my hands toastie and soft!  Anyone use hot water bottles/wheat bags? I saw a garden centre selling small "hand" lavender wheat bags - an excuse to go back and check them out again! It maybe they are over priced?! Bedtime Xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 242
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Heat holder socks are made from a specially insulating yarn and have a soft brushed inner which makes them the warmest socks you will ever buy. They are really easy to get on and off and so soft with the brushed inner that they cushion my painful feet. You can put heat holder socks in google and it will show you loads of places to get them from, I notice amazon are doing heat holder gloves now.
warm wishes Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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I got heat holder socks for my girls when they are out riding - they love them! I bought mine at Matalan - and they've been advertised on telly recently so I expect lots of other street shops stock them too. Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 yesterday in the centre of express newspaper featured keeping warm, now its colder. May be online with express/health items. On a Tuesday & Wednesday is when mail and express do a health slot towards the end of the paper (not as far back as sport)! It features different health and illnesses - someones experience, and new procedures. Sainsbugs have stretchy soft socks I saw today by nighties - pack of 2. I think it was around £6.00 On cbeebies is a childrens programmee starts at 4pm explaining simple health things to kids - today is headlice!!! My daughter is enjoying the programme! Eerrrrr  Wrap up warm everyone. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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thanks peps will look on line now,dorothy
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009 Posts: 81 Location: norfolk
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Hi I noticed that good ole Primark are selling some very soft thick fluffy long socks and (not tight) with the non slip pads on the bottom. I also bought myself a pair of thick fleecy trousers with cuffed legs at a fiver I thought ideal - as evening arrives and I really begin to hurt and then get very cold I can slip into PJs with these over the top. M & S also had similar trousers (but not in stock in my size) for £12.50 with a second pair half price. I too use Heat Holder socks. Does anyone else find that any gaps ie ankle to socks keeps them feeling freezing. V necks have to be filled with a scarf. I have only just got changed and I am wearing real sheepskin long boots/slippers but my feet are cold because I havent got socks on too....just off to remedy that.
Keep warm Sue
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I've always got cold feet, hands and nose. Told my husband that I want some of them slipper fur booties for Christmas to keep my tootsies warm, he always moans when we get in bed. My hands are always cold, but I say ......Cold hands, warm heart! Not sure about the cold nose, perhaps I am having too many Bob Martin tablets Paula x
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Rank: Member  Groups: Registered
Joined: 9/15/2012 Posts: 18
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Hi there
Just to update you - after my query about my ice feet and all your great advice, I spoke to my rheumy nurse who referred me to the rheumy podiatrist who I saw today. And yes, I have got Raynaud's phenomenon. Apparently it's not very serious (thank goodness) and explains why my tootsies have had several episodes of going from white to purple and then bright red. Everyone's advice about ways of keeping feet and hands warm was very helpful - thank you.
It's so strange having cold feet as I've been hot all my life and never suffered from cold feet or cold hands. At last I can wear all those snuggly socks and woolly gloves that always look so appealing but I've been too hot to wear up until now! I'm heading to town tomorrow so I shall check out Primark and Sainsbury's.
Love Katie x
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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at least now you know and have a name for it,happy shopping,dorothy
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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I wear thermal underwear vests and leggings to stop the draughts getting in between. At the moment I have on a bra, vest, a long sleeve top, a fleece, knickers, thermal leggings, thick leggings, socks and furry ankle slippers. The heating is on, I am at home working and my toes, fingers and nose are still cold. Bit of a nuisance, cold fingers when trying to type and winter is not even here yet ............................ Tonight there will be an addition of a hot water bottle and by about 10.00 p.m. tonight I might just be warm. My Husband despairs of me as he sits there wearing his tee shirt complaining how warm it is Jackie xx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I have Raynaud's too. It started with the onset of RA. It is therefore secondary as opposed to primary Raynaud's. I take Nifedipine for it and vitamin e. Last year it got so bad that I developed finger ulcers which was the start of gangrene (hence the drug treatment). Try to prevent attacks and if you can'r seem to get things under control do seek advice about drug treatment as Raynaud's can cause severe problems if it gets out of hand. Mine is in my fingers and toes and causes them to go completely white. Naomi, X
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Oh Jackie - your post made me laugh!! I have a mental picture of you in all your togs with your hubbie stripping off!!!! Hope you're warm tonight xx Naomi - that sounds really nasty! Glad you've got it under control now - do finger exercises help at all by getting the circulation going? Are you back in the UK now? Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I don't know whether the finger exercises would help....I suppose anything that gets the circulation moving is good for the hands....but with Raynaud's there is severe spasmodic constriction of the blood vessels and the blood supply is completely cut off so I don't think excercises would really help (could be wrong here).
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Rank: Member  Groups: Registered
Joined: 9/15/2012 Posts: 18
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Naomi - thanks for that advice as I probably wasn't taking it very seriously  . Today I was prescribed Nifedipine to take when I have attacks of Raynauds and I've been advised to keep fingers and toes warm, especially when the weather is very cold and even to wear gloves when taking things out of the freezer. So no jumping out of the hot tub and running naked through the snow back into the house...  The doc said my circulation was fine and it wasn't to do with circulation so exercises wouldn't help. I love my snuggly socks and fur-lined red Santa boots! Katie x
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