I've posted this in Lupus and the Raynaud's & Scleroderma groups, and no responses. Surely I can't be the only one?
Raynaud's in nipples?: I've posted this in Lupus and... - NRAS
Raynaud's in nipples?
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Brychni
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Hmm, by the lack of response you probably are! There is such a condition as for sure you’ll have consulted Prof. Google but in all my very long nursing career I’ve never heard of or come across it. Bet your rheumatologist will have done though so worth asking if you’re bothered and worried by it. Best of luck and hope there’s something that can be done.
I just googled it and it is a thing !
Nothing surprised me with these pesky autoimmune diseases.
Can't say I have this problem as my nipples can be tucked into my socks these days !
Hope you find some relief x
🤣
😂
I understand why no one has replied here because Raynaud’s isn’t much associated with RA - especially not severe. I haven’t looked yet but saw your post on SRUK - but probably did same as others. Scleroderma is so rare that it’s a much quieter community.
Raynaud’s in nipples isn’t uncommon - it’s mentioned on many resources especially SRUK - mainly in relation to breast feeding mums. I only noticed mine because our old shower had a 1970s mirror of kinds built in to one side. When we moved here 3 years ago I suddenly became aware, through the steam, that one nipple was dark blue and the other white - same as my fingers and toes.
Also I get random bouts of nerve pain in them which my GP initially diagnosed as neuralgic shingles - later post herpatic - no rash just the nerve and some reddening up the line to my neck she found. Since then I’ve noticed cold seems to be the trigger and adopted padded bra vests on top of ordinary ones all year round as I’ve lost 6 stone from scleroderma gut.
I dont think, unless you’re breastfeeding, most women would notice this tbh so this may be another reason for few responses?
Yes, I did experience this, many years ago on a very cold winters day. I was wrapped up but still struggling with Raynauds in my hands, feet, nose and then my nipples too. It was the worse attack I’d ever experienced and fortunately, I haven’t since. I avoid being out in very cold weather.
As Old Ted says, it is commonly known in breastfeeding circles, one of the things that most breastfeeding counsellors and all lactation consultants will know about it.
I certainly noticed it first when I was breastfeeding. I looked it up in a book about breastfeeding and there it was. I don't know if it still happens. But I do know I have had my fingers go white a while back over the course of a year or so, but now that has stopped.
I suffer with Raynauds and Lupus. Every time I am really cold in the bathroom both my breasts go purple! When I go under a hot shower they go very pink and seem to be okay. As long as I am warm I’m okay. Never thought to mention this to my rheumatologist. Perhaps I should. At least they don’t go white like my fingers can do!
Thank you all for your replies. Was interested to know how it might have developed, gone away or made a return as it seems to be with me. So:
I very first had it when I was pregnant (at 16) then in my other 2 pregnancies (30s). So in my nipples only ever when pregnant. I breast fed all 3 and didn't get it while breast feeding. an attack was severe, especially with my first. I remember, after weeks of putting up with it I finally took a look in the mirror and was horrified to see they had gone almost black. It was so bad it made me cry. I have no idea why I didn't tell the midwife. Perhaps as I was routinely ignored or bossed about on account of being so young I just kept my mouth shut.
With my second I did tell my midwife and she didn't know what I was talking about. Then with my third I took to Google and lo and behold discovered it was called Raynaud's although at that stage I had not yet started to get the white finger thing.
I'm bringing it up now because I felt it again the other day, for the first time in literally 16 years. (I'm not pregnant!!! 🤣 I couldn't believe it. I've also had issues with fingertips (and toes) and swollen fingers recently - almost like a flare up of something and all of it cold related even though weather is warming up now. It has all died down again but finger was really painful and looked like it was becoming infected.
The cold thing is horrible. Apart from the extrememties if I am still and cold it makes me feel sick and headachy. Then when I finally warm up, another new thing, is my cheeks going bright red and blotchy and staying like that for ages. It happens when it's sunny as well, especially in the car. Never had this in my life. Can't quite figure out if it is heat or sun.
Puting on cold shoes, even slightly cooler shoes, holding my hairdryer, touching steering wheel first thing, using mouse at work, getting into cool sheets - even it it's warm - I'm still using my electric blanket to take the edge off as I just can't bear to feel cool fabric!
