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Scleroderma & Raynaud's UK (SRUK)
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Raynaud’s feet

Does anyone have Raynaud’s that primarily affect their feet? My fingers and nose also get very cold and take forever to warm but don’t do the color change.

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Mine effects my hands and my feet.

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Hi mine affects my feet they go deep purple my tip of my nose is cold and my hand hardly any thing my feet go from pink straight to purple got no help from doctors at all after two years paid to see the Rheumatologist my self she did test to find out what was wrong I have secondary raynauds she is doing more blood test

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You reminded me of my Dad always touching the tip of my nose and joking about it always being cold, like a dog’s nose 😂.

Last time mine stayed purple longer than 2 days, I was given “isosorbide moninitrate” to get the circulation back into the toes and it worked. Normally I just take the amlodipine daily.

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I do too. 25 years ago, when first diagnosed, it was in my hands, fingers, nose. The outset, my hands up to my wrists, turned to a dark plum color. Following that in weeks & months ahead, all fingertips ulcerated, bled and the tip of my index finger eventually turned black and fell off. Also had patches on both ears that turned blue (really a dark plum color). Took Procardia XL for a number of years. Meds were reduced to 30 mg a day. NOW, 25 years later, my toes and fingers (first 3 toes both feet) and and fingers (also first 3 fingers, both hands) turn deep plum color).

Recently increased up the Procardia again because I’m suddenly re-experiencing bloody, deeply cracked fingers once again. At wits end with this disease.

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Gosh! You've really been through a lot Patatie50, you must've been in so much pain. Sending positive healing vibes....I hope you get the medical help you need soon.

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I do I get huge white patches on the soles of my feet it takes ages for circulation to return I get it in my hands nose lips and ears too

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I get that all the time it starts off in the shower, with the hot water I get the white patches on my soles and they stay there for and hour or more

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It affects my hands and feet, they're both steadily getting worse

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Yes I do. My feet have been the main problem since I was diagnosed 5 years ago.

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What type of scleroderma do you have? Is it the one that mostly affects your skin?

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Get both hands and feet but if a chill it gets into my lungs feel like going down with something if can't get warm even with many layers still feel cold and if don't get a change then can get ill next day.Feet go purple.Yellow and all sorts! plus dam painful much of the time also get blister type things come up.

Had the "Stupid" Quack "it's only hands and feet" Ere no but you get back to dishing out Paracetamol and just send me elsewhere.

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I can really relate to your description. It even happens when I have a cold drink, no ice for me!

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Hi I have had Raynauds for about 30 years I have cold hands feet and nose I also have been diagnosed with systemic sclerosis for 10 years I am now 75 years old,

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I get it hands, nose, ears and feet. Feet lately are the worse, takes ages to get them back to normal. I also experience difficulties when breathing cold air in, it’s as if my lungs shut down 😢🙄

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I get that too with my lungs

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My hands and feet are the worst cold and tingly all the time

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Anyone have any good tips to minimise how much your life is effected by the cold feet?

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