Raynaud's in nipples?

[Brychni]

does anyone else get this?

[stiff19]

well ive never had it diagnosed other than hands and face and if you mean real painful nipples that turn blue and red and burn and the breast itself turns blue veiny and red and then white swollen then possibly . The thing is finding any knowledgeable doc who would understand as being a woman its your hormones or menopause or weight or...........I hope you get and answer though 🙏

[KellyInTexas]

yes. ( I have APS)

Before I was DX with APS, but was very symptomatic with it, ( and raynauds) I went to my OBGYN because I thought it had to do with a hormonal imbalance.

She said no, but had no idea what it was.

Once anticoagulated, it did help quite a bit, getting blood flow to those tiny capillaries. ( also wear a bra with a bit of padding for warmth, and woolex t shirts long or sort sleeved, or cashmere blend for natural regulation.

[KellyInTexas in reply to KellyInTexas]

( and on a side note, it was rheumatologist who told me the nipples are involved in Raynaud syndrome, )

[Brychni]

Posted on NRAS group also:

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!