Raynauds breast pain

I am 35 and ever since I started to develop first hint of breasts at puberty I have had bouts of extreme pain in them. I used to get it when walking to school in mornings as a young teenager. My mum said it was growing pains. I was never taken to a doctor about it. I had numerous issues growing up, extreme bullying, undiagnosed aspergers, dysfunctional family. Too much to go into. Painful breasts was not high on my list of what was most wrong with my life. The pain tended to happen when I was out so I never really was looking at the skin. Pain would go on for hours and was very distracting in school and later at work but I just never thought to go to doctor about it again because I had so many bigger even more distracting issues in my life. I sometimes googled breast pain but did not find any relevant answers until couple of years ago when I kept getting these painful attacks more frequently even while at home and was able to see the shocking colour changes going on. My nipples stayed blue and white so long and so often I thought they would die and drop off. Then I found that raynaud's matched my symptoms perfectly. But everything I read talked about it being related to breastfeeding. I have never had a child though. I can only assume I get it so badly in my chest because I have large almost permanently erect nipples. The only time they are flat is first thing in morning when I wake up but within a minute of being conscious they perk up. If i am awake then so are my nipples even though I have small breasts. I had to take a photo of my nipple colour changes in order to convince my GP who had never heard of raynaud's in nipples. Even then she looked it up online in front of me to prove I was wrong only to find that yes it is in the medical literature that nipples can be affected.

Yesterday was my first bad raynauds nipple attack of the cold season. It was not even just my nipples though, my whole breasts were affected and ice cold to touch. My partners have always teased me that I am cold as a corpse to touch in general. I often feel ho and bothered but my skin is still cold to touch. I have tried those gel nipple pads, putting pillow stuffing down my bra , hugging radiator hot showers, hairdryer blowing on me, fur covered hot water bottle up my jumper.

My GP did prescribe me some naproxen years ago but only to take occasionally which is no good when get multiple attacks a day all through cold season. Also I am not allowed to take it with Lithium which was prescribed for my bipolar. Since I have made a point of paying attention to skin colour changes i can confirm I also get raynaud's in my fingers, toes, ears, nose which can be painful but nothing compared to the breast and nipple pain. I was just wondering do other women out there suffer to this extent with raynaud's in breast and nipples even those who never had children? it has been 25 years of this now and my nipples have never fallen off so I guess it is not dangerouse but it really hurts.

10 Replies

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  • Hi Lauraalice, am so sorry to hear that you are having such a painful time with the raynauds in your breasts. I have raynauds in my hands and feet but not in my breasts but I can imagine how very painful it must be for you. Did your doctor refer you to a rheumatologist because they will be the best person to assess you and get you on the right medication. Also I found looking into my diet and taking vitamins has helped with my circulation. In the meantime sending you lots of healing thoughts xxx

  • No I was never sent to a rheumatologist. I do not think doctor took the issue very seriously probably because I have too many things wrong with me. My periods have been irregular since puberty with symptoms fitting PCOS but blood tests not showing any abnormality. I frequently get tendonitis for no good reason in any of tendons in feet but mostly achilles, I used to get it a lot in forearms but not for years now. I once went to A&E few years ago with agonising abdominal pain convinced some organ must be about to rupture, pain was radiating from abdomen through my back and up my neck and even down my right arm but then settled to being concentrated in abdomen so bad I could hardly breath. I has an x-ray, an ultrasound, blood tests and nothing was found. It fitted gallbladder problem but nothing showed up on tests so I was sent on my way with painkillers. That happened several more times but I was too embarrassed to go back. It always went away on its own. I have had all sorts of gastric upsets again with nothing to explain why. I have repeatedly gone for gynecological exams to investigate vaginal pain again with no cause found. I get random needle prick and stabbing pains all over my body but those pains only lasts seconds usually. I am a medical mystery. I think because I have bipolar that maybe they think all my weird ailments are in my head, although I do not think that is the case. The raynauds is definitely not in my head, I have photographic evidence. I have thought in past about asking to have my nipples removed they hurt so much, feels like they are being squeezed in a vice. Then summer comes and I forget about it. I don't get it as often or as bad in summer. Putting my frozen veg away in freezer can set it off but even though it is my hands being exposed to cold , my chest can be set off by that. I will have to pay extra attention to staying war I suppose. I get hot and bothered very easily though to the extent I am wet with sweat but even then my skin is cold to touch. Cold sweats would worry me but my heart has been checked many times and declared normal.

  • HI lauraalice - i have severe raynauds as part of an autoimmune thing, it really affects my hands/feet but can be triggered by cold air hitting my face even if hands/feet not exposed you describe similar, likewise my trunk can be sweating - literally sweat stains on my shirt but feet dead & cold.

    Meds certainly do modify it for me nifedipine realy helps my hands , you could ask to try that also you can get a gel of GTN prescribed which is applied topically - you rub it in to affected part and it has a local vasodilation effect & improves blood flow - it can help bad hands so why not nips?

  • Hi Lauraalice, I am sorry you are not being listened too but it definitely sounds as if you need to be referred to a rheumatogist with all these systems - could you, maybe see a different doctor. Good luck and stay warm x.

  • Hello Laura Alice

    I too have Raynauds, but not in my breasts, but my daughter does. She has suffered with this extensively and especially once she became pregnant with my first grandchild.

    The best solution she found was a bra insert that was very thin but looked in fact like metal. It was a fabric but gave an extra layer of insulation so that the attack could never begin. It worked.

    The down side is that when she was indoors in a warm environment they were too warm so she would have to go take them out. It was easy enough, very light and flexible.

    If you are interested I can find out where she got them, as I recall they were recommended by her doctor.

    Good luck!

    Susan

  • Yes please. Those inserts sound like something I need in my life. I just went out to do my weekly shop. I had gel nipple covers and wool pads in my bra and then a shirt, jumper and thick coat on. As soon as took my coat off when I got home the pain started in my nipples again. Had to put my heating on and am sat in the living room with my outdoor coat back on too. My back went into spasm while out too and has not eased off yet. I suspect the cool weather has set that off too. I should hibernate for the winter I think. Going to get my hot water bottle out now

    :)

  • Here's is the link, my daughter swears by them. A bit pricey but as it said there is a metal like shield that is fabric covered, all flexible and soft. It keeps your body heat in and the cold out. They really worked for her.

    If you have trouble getting them let me know as my daughter has an extra brand new pair still in the bag.

    I never know where some companies will ship?

    nursingangel.com.au/breast-...

    Good luck!

  • Hi Laura Alice - I had nipple Raynauds when breastfeeding my 2 babies - it was the worst pain imaginable. If I had to live with that pain, I would live somewhere tropical. The pain miraculously disappeared when the seasons changed from winter to spring (virtually overnight). I am 50 now. It's interesting reading your story. I've had general breast aching on and off for years - I had never related it to temperature before, but as I sit here out in the cool breeze, my left boob is aching - I'll keep an eye on that and get warm and see what happens. I do hate getting hot, so it's a balancing act. All the best.

  • Definitely get to a rheumatologist, as others have recommended. Raynaud's in fingers and toes left uncontrolled can lead to ulcers and even amputations in some cases. It's really important to learn to prevent attacks because the attacks happen when vascular damage is occurring. This is especially true with secondary Raynaud's, but is still a risk with primary. "Hot Hands" are great to insert in gloves to prevent finger attacks, and you may want to try getting some to insert in your bra on cold days to see if it helps. Nifedipine would be the more appropriate drug choice, Naproxen is similar to ibuprofen and won't address the root of the problem. A rheumatologist would have had you on the proper treatment, minimizing the risk of damage and progression. I'm sorry you've been dealing with this for so long, it sounds miserable. Best of luck to you.

  • Yes I think I will make another appointment with GP next week and let her know the pain in my chest is not a minor thing. I end up doubled over in pain and sometimes and have to physically squeeze the blood back into my nipples by force which works while squeezing but they go white again as soon as I stop. I do seriously worry sometimes that my nipples could fall off. I have noticed in previous years that by the end of winter the skin on my nipples gets very dry and flaky, I wonder if that is due to damage of lack of blood flow. I don't fancy getting ulcers on them when older. Some intervention is probably a good idea. My partner would go in to shock if I was prescribed something that stopped me being like a human icicle. Even in height of summer my bum and feet are cold to touch.

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