Raynaud’s Phenomenon

Do you know Raynaud’s? If you suffer from cold hands and feet you could be one of the 10 million people in the UK living with Raynaud’s Phenomenon.

February is Raynaud’s Awareness Month and although this is as common as hayfever, many people do not even realise that they have it. However, it is vital to know if you do, so that you can learn to control the symptoms and rule out any underlying causes. When you become pregnant, it is also important to tell your midwife that you have Raynaud’s, since this could affect your delivery plan. For some women, Raynaud’s may also cause difficulties when breastfeeding.

#KnowRaynauds

The latest research released by national charity Scleroderma and Raynaud’s UK has highlighted a shocking lack of awareness around Raynaud’s, with almost half of us not knowing the symptoms to look out for or what to do about them. Although around 80% of affected people are women, half of those surveyed said that they would not visit their GP if they were experiencing extremely cold fingers and toes, and over one-third (36%) felt that the COVID-19 pandemic would make them less inclined to seek medical advice about these issues.

Raynaud’s symptoms

Symptoms are caused by changes in the extremities: the hands, feet, fingers, toes and even the ears or nipples; usually in response to cold temperatures or emotional stress. These include:

  • Cold fingers and toes
  • Colour changes in the skin in response to the cold or emotional stress
  • Colour changes in the affected area to white, then blue and then red
  • Numbness, tingling or pain in the fingers and toes
  • Stinging or throbbing pain upon warming up

When we are exposed to the cold, it is normal for the blood vessels to become narrower. If you have Raynaud’s, this can be much more extreme and blood flow is restricted. This may cause a noticeable colour change in the affected areas, with the skin turning white, then blue and finally to red as the circulation returns. This is a Raynaud’s attack, which can be very painful. It is not just cold weather that could trigger an attack; for some people just reaching into the fridge or holding a chilled drink is all that it takes.

 

Take the test

If you recognise these symptoms, you could be living with Raynaud’s. We have developed a quick and easy online test that is available at sruk.co.uk/raynauds/raynauds-test/

Most people receive results within 60 seconds, along with information about what to do next if you could be affected.

 

About Raynaud’s

There are two types of Raynaud’s Phenomenon, primary and secondary. Primary Raynaud’s is the most common form, and although this can be extremely uncomfortable, it is not linked to any other conditions.

Secondary Raynaud’s may be more severe, and accounts for around 10% of cases. It occurs when Raynaud’s is associated with another autoimmune condition, such as scleroderma.

Although there is currently no cure for Raynaud’s, there are ways to help control the symptoms. It is important to keep warm, especially in cold weather. If the attacks are severe and affecting your daily activities, medication may be prescribed by your doctor.

 

Raynaud’s and pregnancy

Primary Raynaud’s is not likely to cause any fertility issues or serious complications for either pregnancy or delivery. It is important to avoid becoming too cold during labour as this could trigger an attack, so use your birth plan to note down some practical steps to take, as well as what your birth partner can do to help. Adding extra layers or a warm blanket to your hospital bag could make a real difference when the time comes. Even if you are planning to have an active or a water birth, if your baby is being closely monitored you may have to lie down and possibly feel the cold more easily, so consider packing a few extra items just in case. If you can manage them, warms drinks will also help.

As well as the hands and feet, Raynaud’s can also affect the nipples which may cause difficulties with breastfeeding. Always talk to your midwife if you have any concerns about this. Try to ensure that you can keep as warm as possible when you are feeding; warm drinks, blankets and a breastfeeding shawl may all be helpful.

For some women, symptoms may worsen several months after their baby is born, although this is usually only temporary, and things should eventually return to the way they were before.

Secondary Raynaud’s is caused by another, underlying health condition which may potentially cause complications in pregnancy, depending on your individual situation. It is advisable to talk to your doctor about your diagnosis before you become pregnant, since you may need to be monitored more closely and if you are prescribed certain medications, these may need to be adjusted before you conceive.

 

Caroline’s story

“The summer my first daughter was born was not particularly warm, and towards the end of August there was a noticeable drop in temperature. Living in a poorly-insulated Victorian house meant that we really felt the cold coming in. Still, when I started to have pain while feeding my baby, I did not understand what it was.

One evening, I felt uncomfortable when I took away the breast pump and I noticed that my nipples were dark purple. I dismissed this as engorgement due to the suction of the pumps. Over the next few days, I frequently felt pain shortly after feeding my daughter or expressing. It felt like very intense spasms in the tips of my nipples and when I thought to look at them, I noticed that they were white. Sometimes I also experienced pain as my baby latched on and this was incredibly difficult as I didn’t want to upset her by reacting to it. I remember telling my husband about the colour changes, but it didn’t occur to me what they meant. All I knew through the general new-parent fog was that it hurt badly enough that sometimes I couldn’t help shouting with pain.

I knew I’d had (Raynaud’s) in my hands and feet for years, although I never had it formally diagnosed, but it never occurred to me that it could happen in the nipples.

Since then, I have spoken to many women who have experienced pain due to breastfeeding, several of whom gave up breastfeeding rather than enduring months of pain. I have made a point of mentioning Raynaud’s at any opportunity, since it is common but easily missed.”

 

Who We Are

Scleroderma and Raynaud’s UK (SRUK) is the only charity in the UK dedicated to improving the lives of people affected by Scleroderma and Raynaud’s. We exist to improve awareness and understanding of these conditions, to support those affected and ultimately to find a cure.

 

How We Can Help

SRUK is here to offer support through your diagnosis and to help you manage your condition; we offer a free Helpline service, a range of information and links to support groups in your area.

For support and information go to: sruk.co.uk or call our free Helpline on 0800 311 2756. You can visit srukshop.co.uk for our latest factsheets and lots of other useful resources.

SRUK relies upon the support of our community in continuing our work. For more information or to get involved, please visit sruk.co.uk/get-involved/ email [email protected] or call us on 020 3893 5998 and we will be very happy to help you.

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