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LUPUS UK
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Freezing hands and feet.

My hands and especially my feet are constantly cold. I can be sweating, but my hands and feet are freezing. I have lupus/sjs, at the moment there is no pain, or tingling although they feel pretty uncomfortable. My Nurse has prescribed Pregabalin, but no change. Just wondering if I could be developing Raynauds, if so what should I look out for?

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Hiya,

It sounds like raynauds to me. I have raynauds and had a blood clot at the end of my finger (I also have antiphospholipid syndrome/sticky blood). I take nifedipine to improve the blood supply to the fingers and toes, which really helps with the raynauds symptoms.

My fingers change colour, turn white and become numb and then painful.

I know what you mean about being extremely hot and then have freezing hands - prior to diagnosis I was told to wear gloves - in the middle of summer!!! It is always worse in the winter though.

Hope you find some relief. Take care. :0)

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Sounds very like Raynaud's Maggie81. I have that, and initially I actually passed out twice in the snow when I got my hands really cold scrapping my windscreen.

I am never without gloves, and I really mean never. I wear fingerless ones all the time, even in bed with electric blanket on all night! I have to put on rubber washing up gloves on top of fingerless ones to go in the freezer.

I work where I've to go in and out of cold warehouse, and every year I say I won't manage another winter!

Feet can get cold ever so quickly, so again never without thermal socks, bootie type slippers, even in summer, which is almost non- existant here in rural Aberdeenshire!

Keeping warm, and that's the entire body, including torso etc, is vital. The times I'd passed out, I had on a skimpy open neck blouse, no gloves, etc, etc,....before I learn my lesson!

Medication did not agree with me, so I coose to try and get by without, but cacium channel blockers can help tremendously, if they give you no side-effects. I would go and get it investigated, as it does go hand in hand, (excuse the pun), with the other issues you have, (as I have Scleroderma, Mixed Connective Tissue Disease, Fibromylagia, Osteoarthrits, as well as the Raynaud's).

Hope you get sorted out in some way before winter sets in, XXX

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Thankyou Lols & Larsonsmum

Started the medication, but as yet no change. As I have no pain (yet) it's really weird. I am learning to wear slippers and warm socks, but I am so used to going without, and wearing open sandals, so putting on bedsocks at night is really strange.

I am seeing a new Consultant in London early September so am hopeful if he can give me an answer.

Maggiex

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Hi Maggie - sounds like Raynaud's to me. You can get all sorts of battery-operated gloves and hand warmers on the internet which will be really useful for the winter. Oven gloves are useful to get things out of the freezer. Do you have livedo reticularis as well - lace like rash on arms/legs - they usually seem to go together? xx

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Hi Mary

Thanks for your response, I appreciate the tip about the oven glove. Not sure about livedo reticularis, although I do have the obvious lupus trait across my face, especially in the morning (I look like I've had a night out on the tiles)/

Regards

Maggiex

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I sympathise too...I am cold most of the time. I have found it helps to wear thermals as well as fingerless gloves indoors during the colder months. I am already back in my vest this week. Marks and Spencers do some really good selection of thermals and socks especially if you want something a bit more fashionable. I then wear mountain/ski thermals when it's really cold. Glad I have an understanding partner! Rohan also do some really warm gloves. Best wishes x Jacky

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Hi Jacky

Thanks for your reply, this condition is certainly a problem. I do have diabetes, but my circulation seems to be fine. I see my new Consultant Prof Isenberg on 8th September so its on my list!

Will certainly be checking out M&S, my husband Peter is very ameniable to my cold feet on his back as is the cat.

Maggiex

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Funnily enough my hands and feet are stone cold as I am typing this albeit I have socks and slippers on and the central heating is full blast - ahh the joys of a scottish summer! I too have noticed this happening to me although I do not have the inflammation nor discolouration of my hands but am sure it is all linked! Thank goodness for electric blankets and bed socks - not things of beauty but hey who cares as long as it helps - agree with advice above re gloves, recommend UGG boots too which are lush and also marks and spencers for good thermals!!

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Hi St. Andrews Lupie

Many thanks for your response, having spent many years in Scotland from the late sixties, and seventies I can sympathise. I have diabetes, but my circulation appears to be fine, so I will be bombarding my new consultant in Septmber about several things, including the possibilty of Raynaurds.

Keep warm

Maggiex

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Hi Maggie

I have problems with my hands and feet all year, they have prescribed Nifedipine. I havent started it yet, as am starting another new drug for Lupus, but might be worth mentioning...

JJ

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Hi Maggie

I was diagnosed with reynauds soon after being diagnosed with Lupus sixteen years ago. My life saver is the small reusable hand warmers, the sort with the metal disc you click to activate them and boil them to reset. I carry three or four all the time in winter. Worth a try.

Helen

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Hi

Yes reynauds here too - as if cerebral lupus,epilepsy, chronic pancreatitis, kidney stones, fibromyalgia, early growth cataracts due to steroids and osteo-genesis imperfecta is'nt enough!

I have thermal gloves stashed everywhere. In the car, in all jacket pockets and handbags. In all houses I tend to visit - family as well as friends.

Unfortunately my hubby is'nt so accomadating with putting freezing cold hands and feet on his body to try and help warm them up but hey he puts up with enough already. I like the tip about the oven gloves for getting stuff out of the freezer.

One of my sons and one of my daughters has reynauds too (Andrew a lot lot worse than all of us put together - so severe non of the services would let him join up. Amazingly Jennifer is an identical twin yet Susan is'nt affected but shares other things with her sister.

According to my consultant they have it through me. Anyone else heard of that?

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I'm another one with Raynards / Hughes Syndrome. My feet and hands are always stone cold, have been wearing my sheepskin boots all summer and there was only a few nights this year I've not slept with a hot water bottle. My feet even go blue when I sit for a few mins & don't keep moving so it sounds like Raynards to me. My GP said to wear themals as much as I can and I got some great thermal tops and leggings from M&S and Next do RAF brand thermals as well.

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Hi, I have reynauds/hughes syndrome with the sle. I was getting terrible pain most of the time in hands and feet when they got slightest bit chilly, ending up like freezer blocks. Rheumy would not give me nifedipine because my blood pressure is too low, so his advice was to try Fluoxetine (prozac). Wasnt too happy about this as I really did not want to go on anti depressants, but he convinced me to give them a go as they had good results for reynauds. Hey presto, after few weeks, amazing result. Got to get through the winter yet but normally even in the warm weather I would have attacks, so here's hoping.

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