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amp2011 04-19-2011 06:55 PM

Raynaud's or Vasospasm WITHOUT breast feeding
 
Hello
I am trying to get information on Vasospasm or Raynaudís Phenomenon without breast feeding.

I am a woman in my 50's and since my 20's get very sore breasts if I go in cold weather. The pain is really bad if its cold and very hard to get rid of the pain

My GP said he has never heard of it.


So seeking more information on Vasospasm or Raynaudís Phenomenon without breast feeding as it happens at my age due to the cold
Thanks

Kel123 01-02-2012 07:37 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
Hi,

I have had this same thing for the last 10 years and I am now 38 years old. I am not currently breastfeeding. I also have connective tissue disease with arthritis and very high ANA. My breasts get extremly sore when I am cold. The freezer section of a grocery store will trigger it..as well as shivering from the cold outside, or a fan blowing on me when getting dressed, or the air conditioner being on. I feel your pain. My nipples will vasospasm and turn completely white..then they turn blue and red. it is beyond painful. It has brought me to tears on many occasions and interrupted my life as well. My rheumatologist never had heard of it happening to the breasts..but after my story, went to a conference and it was discussed. I was NOT crazy!. I just started taking nifedipine ( procardia) for it because it has gotten so bad. I even have positive vascular changes on my mamogram from it. It is still early..but so far the medicine is helping a little I think. My attacks have been fewer so far. I have had to go slow with the medicine because it is a blood pressure medicine and my bp already runs really low. I declined the medicine for years..but I was in too much pain too frequently and decided to give it a try. I have the raynauds of my fingers also, but not as severe. I hope this helps..it is not very common..but it is life-altering and so painful! I have been known to put hand warmers in my bras and I always wear a down filled vest to keep my "girls" warm when it is cold.. It is miserable!

Kelley

kadensmom 07-19-2012 06:34 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
I was relieved to find this thread as horrible as that sounds. I know its older but I am hoping someone will see it and respond or that maybe the OP or only responder will have some more info for me. I have been getting vasospasms in my breasts for 8 years. It started when I was 22 before I had ever been pregnant it happened in the winter only and was infrequent like maybe 1-2 times a week. When nursing my only son now 5 it happened frequently. Now 4 years later it can happen in the freezer section or in the summer when its just cool outside. It also seems to be more painful and longer lasting the older I get. I have recently been getting a lot of tests and seeing specialists for a bunch of symptoms joint pain, chronic venous insufficiency petechiae on legs, red rashes on face and chest, hair loss and headaches but my tests have come back fine. As of right now I have been diagnosed with the following arthritis in my knees, carpel tunnel, insomnia, chronic venous insufficiency both legs, very irregular periods and edema in my knees, feet, ankles, hands and wrists. I have seen a derm., rume., cardio., OB, and my PC most of them have no idea what I am talking about. The cardio refers to it as "tender breasts" I wish it was just tender breasts when the attacks are severe they can last for an hour and bring me to tears. The Rume checked my hands and asked about color changes they do get red and white in the cold but its not severe or painful just very cold feeling, she said my hands or feet would have to have prominent color changes to be raynauds? If so is there another condition that could explain these attacks? I do get the nipple color changes and my breasts even seem to get very pale then red. I do have poor circulation, my arms, hands, feet and legs are often very cold compared to everyone else and the rest of my body. Any advice would be greatly appreciated.

luca689 07-20-2012 10:30 AM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
Most Dr's would now consider your symptoms Raynaud's even if you don't reach the blue colour phase, or cyanosis in your fingers. Raynaud's showing up in the nipples is not typical but far from unusual. People can also suffer from it in their ears. Have any of your Dr's performed a nailfold capillary test? Or have they looked at a mammogram, like Kel123 did? Are your rashes like little red dots that blanch when you press on them, but never go away? They are or can be a wee bit bigger than petechiae and are called telangiectasia. There are many treatments for Raynaud's ranging from staying warm and stress free to calcium channel bockers and other drugs. Have your Dr's run the standard autoimmune antibody test and do you have an elevated sed rate? Those sorts of things can separate Primary Raynaud's from secondary. I would contact my local Raynaud's support group as well. Most big cities have one if there is not one in your town. I would also have to question your Dr's for not knowing about Raynaud's showing up in nipples or ears. And I would want to know if the arthritis is erosive or non. I would also want to be checked to make sure that your Raynaud's is primary. Most cases are, so don't worry overmuch, but on the miniscule, extremely rare chance that it is secondary, early treatment can be very beneficial.

kadensmom 07-20-2012 01:45 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
Wow thank you so much I really did not expect a response that quickly. I think I will try to find a vascular specialist. I had assumed the Rume or Cardio Dr. would understand what I was referring to and know what to check. Apparently not I have not had either test mentioned. My rash is splotchy red area going across my chest almost a triangle basically what would be exposed wearing a low cut v neck shirt. There are little red dots that have been popping up all over my chest, back, arms and abdomen like pen point size but the rash is more of a solid area that has some darker red splotchy areas. I have no idea if this is all related but it seems odd that it all is related to blood vessels and skin. I have had the TSH and T4 checked also my ANA and the tests for RA. My see rate was low I believe 9 so basically the Rume thought my knees are OA but didnt xray. Can Raynuads be associated with other vascular issues in the legs or joint pain?

Thank you again I will deffinatly contact the Raynuads support group for more info as well.

luca689 07-20-2012 02:13 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
yep, I'm thinking that your rash might be telangiectasias. I have exactly the same rash in the same area. What was your ANA pattern?, if I might inquire? Was it determined if you had primary or secondary Raynaud's? Short answer is yes, secondary Raynaud's can tag along with joint pain and swelling of the hands and feet. And my migraines very much have a vascular component with what is thought to be a mechanism similar to Raynaud's. Wishing you the best.

kadensmom 07-22-2012 06:44 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
My ANA was negative no pattern since it came back negative I am unsure if that means nothing showed or if it was low enough to consider it negative. My RF was was in normal range and my see rate as well. The Rume ran a few other tests which came back within normal range as well. I had one Dr. mention dermatomyositis but again my blood work didnt indicate that. Vasculitis has been ruled out by blood work as well as thyroid. My Rume seems to think I could have early RA but wants to recheck me if my joint pain gets worse. Its all very frustrating Im fine with not having a diagnosis but its difficult to get treatment of any kind because none of the Drs. Seem to want to treat anything in case its the wrong treatment for the underlying cause. Of course its possible all my symptoms are unrelated and there is not one cause which is another reason they seem hesitant to treat me. So far aside from vein surgery on my legs and OTC pain relievers I haven't been given any treatment or solutions. I will deffinatly go see a vascular specialist before resigning to wait and watch mentality though. Thank you for your advice at least now I feel like Im not crazy:)

kadensmom 09-10-2012 03:22 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
I just wanted to update my post and hopefully make this thread easier to find for others with Raynauds of the nipples. After literally speaking with 6 Drs and describing in vivid detail the pain I was having in my breasts after getting cold I finally found one that would listen. I described what was happening she seemed confused but was listening, I told her what I had learned on this website and the 1 other blog I have found and she seemed to have a aha moment. She agreed I do have Raynauds and although uncommon it is manifesting in my breasts primarily. I have suffered with this for 8 years the last 4 winters have been miserable. I had to stop skiing and have a hard time taking my son sledding. Even trick or treating is extremely tricky (pun intended:) ) I have now learned some ways to help control the symptoms I would like to share. I cant use beta blockers right now as I have chronic venous insufficiency and beta blockers can cause venous insufficiency so it would only be worth it if my symptoms become unbearable or dangerous. I have found that although the vasospasm causes a horrible stinging, stabbing, burning pain throughout my breasts it is being caused by my nipples. You can cut it short and possibly stop the attack by massaging your nipples. It is painful and hard to do at times, imagine chatting with a customer please excuse the nipple message I am having a raynauds attack :). I have stopped attacks and minimized them many times this way. Some other tricks I have tried or read about are hot showers, dressing warmly, bra padding and cold avoidance (much harder than it sounds). I have used glove warmers in my bra where a pad would normally fit, as my job requires frequent trips outside I still have to walk quickly but can avoid the attack. I always wear several layers of clothes and have also found breast pads useful for extra warmth. If you pay close attention you can feel it coming on in time to prevent any real pain. My nipples harden and tingle or throb slightly if I get warm quickly I can prevent the full attack. However beware if you eat or drink something cold right after it can still occur it still takes a while to get back to normal. Also oddly enough if just my hands get cold it can trigger an attack my hands may change colors a little and tingle but my breasts get the full painful attack even though they are not really cold. I know this doesn't really make a lot of since but it happens when I wash my hands with cold water at a public park or make pie dough with frozen butter. I have also found that air conditioning can cause an attack very quickly I assume this is due to fast temperature changes? I am no expert and I am still learning how to minimize symptoms but some definite no nos are smoking, coffee/ caffeine, taking cold medicine with Pseudoephedrine or similar ingredients I have taken this drug for long periods without realizing as it is a popular decongestant and is used in my allergy medicine. I am adding some tags at the bottom of my very long post I apologize if that is frowned upon and if my post has officially put you to sleep. My goal is to put this info out there and make it easier to find so other women don't have to suffer for years due to ignorance.


tags

breast pain, cold sensitivity nipples or breasts, Raynauds in nipples not breast feeding, vasospasm, vasoconstriction, numbness, tingling, color changes, breastfeeding, attack, painful, cold intolerance

kadensmom 10-11-2012 10:54 AM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
Thank you Luca you have helped me so much. I have seen so many Drs and had my symptoms dismissed so many times that I honestly didn't know how to proceed. My bloodwork being negative made the Rhume think it was all mechanical. But after more pushing on my end loosing weight and getting in shape I was still getting sicker. My hands started showings more distinct signs so we are now at either mixed connective or Sclero. Still testing however with loss of insurance I am trying to hold off official diagnosis I cant have a preexisting condition so close to getting new insurance. I probably would have given up if not for your encouragement and the info on these boards. Thanks again

luca689 10-11-2012 01:11 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
Yes, you absolutely do NOT want any diagnosis of either of those pre-existing conditions before new insurance! Thanks for updating us and I'm sorry those 2 are coming up but at least you are getting answers. I actually have limited systemic sclero and insurance is touchy.

USmiss 01-21-2013 05:49 AM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
I was just about to post a new posting about this to ask if anyone else has ever experienced this. I was diagnosed with Raynaud's about 3 or 4 years ago. When I am really cold, my nipples start hurting extremely bad. It feels like someone is taking pliers and twisting them. They also turn purple. This happens mainly when I have PMS and my breasts are sore. I guess my nipples are more sensitive? But it also happens at times when I'm simply cold or if I just got done working out and have a sweaty shirt on that makes me cold. My hands and feet never HURT that bad. The nipples are just a pain :-(

moonstone1981 11-07-2013 09:10 AM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
I have had this painful problem 22 years since i was 10 years old. I have quite big almost permanently erect nipples which i think maybe has made me more vulnerable to raynauds nipples. I don't get it in any other body parts although partners are shocked by how cold my body gets in winter. I don't seem to generate much heat. It never hurts anywhere apart from my nipples which really really hurt a lot when it happens. They do all the colour changing between white,blue, purple and red and it can go on well over an hour at a time once it starts. I find putting a hot water bottle near my chest helps, i cant put it on my chest even with the fury cover because the slightest touch of anything hurts so much. I have to take all my clothes off if i can because they hurt too much. It is definitely raynauds. My great grandmother used to get it badly in her hands apparently but no other family have it.
The best relief i have found is silicone gel nipple covers. They are meant to hide prominent nipples for modesty but They totally stop the nipple pain from starting when i wear them. Wonderful things :)

cloraine 11-27-2013 02:00 PM

Re: Raynaud's or Vasospasm WITHOUT breast feeding
 
I've had this problem also. It started when I was breast feeding and had a horrible thrush (yeast) infection in my milk ducts. After that I started having Vasospasms in my breasts. After breastfeeding for a year, i was hoping that my vasospasms would stop but they didnt. I've been done breastfeeding for about 2 years and still suffer from the vasospasms. I've also found that not many doctors are familiar with breast issues-- a lactation consultant is where i found the best advice, even when i wasnt breastfeeding. They've never been surprised or unaware of these breast issues and every single doctor i've ever asked was completely clueless.


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