It’s Freezing: Charity warns public to watch out for signs of Raynaud’s

With Christmas right around the corner and freezing temperatures across Scotland, the charity Scleroderma and Raynaud’s UK (SRUK) is urging people to look out for signs of Raynaud’s – a painful condition that affects blood circulation and is triggered by the cold. 

SRUK says many in the UK are “woefully unaware” of Raynaud’s, despite around one in six people living with the condition. According to the charity, more than one in two UK adults don’t know any of the signs and symptoms with millions likely to dismiss symptoms rather than visit their GP. 

The charity is also concerned that high energy prices are preventing many from properly heating their homes, meaning those in Scotland who are living with Raynaud’s are likely to spend Christmas suffering in silence. According to SRUK, keeping warm is ‘crucial’ for living well with the condition, but a recent survey by the charity found that nine in 10 Scottish people with Raynaud’s (90 percent) reported being worried about the cost of their energy, with many choosing to limit their heating or keep it off altogether. 

Recognising the signs of Raynaud’s 

For someone with Raynaud’s, cold temperatures and stress can cause painful flare-ups, also called Raynaud’s attacks. This is when the blood temporarily stops flowing to parts of the body, most commonly the hands and feet.  

When this happens, the skin can change colour to white, then blue and finally to red as the blood starts to return. The condition can also be extremely painful, preventing many from carrying out everyday tasks like handling bank cards and house keys, unbuttoning a coat and even driving. 

Sue Farrington, SRUK Chief Executive, said: “Winter is well and truly upon us and we know that people with Raynaud’s can find this time of year extremely difficult. We all get cold hands and feet when the temperature drops, but for those affected by Raynaud’s the impact can be seriously debilitating, so it’s important not dismiss it and seek advice and support.”  

Signs of Raynaud’s include: 

  • Colour changes to the skin in areas such as the hands or feet, often in response to cold conditions
  • Cold and numbness in the affected areas, such as the fingers and toes
  • Tingling or pain, especially as the circulation returns to the affected areas. 

For around 300,000 people with Raynaud’s, the condition can be a sign of a serious underlying condition, such as the autoimmune diseases lupus and scleroderma, which is why SRUK is urging people in Scotland to visit their GP if they think they may have Raynaud’s. 

The charity also has an online test people can take to check if they may have the condition. This is available at www.sruk.co.uk/testme  

A warning to stay warm this winter 

SRUK is also warning that many people with Raynaud’s could be jeopardising their health by cutting back on their heating this year. 

From a survey of more than 1,600 people with Raynaud’s, the charity found that in Scotland specifically:  

  • More than four in five respondents (86 percent) said they rely on their heating to prevent painful Raynaud’s attacks 
  • More than eight in 10 people surveyed (83 percent) said they had experienced a Raynaud’s attack as a result of choosing not to put their heating on. Of these, one in three (33 percent) believe it could happen again  
  • More than four in 10 respondents (42 percent) are trying to find other ways to stay warm, such as wearing thick jumpers and gloves 
  • Of those surveyed, the number of people in Scotland paying between £200 and £300 each month for their energy more than doubled between October 2021 and October 2022 (from 16 to 37 percent). Meanwhile, those paying less than £200 almost halved during the same period (from 59 to 32 percent). 

Farrington said: “We know that high inflation and the cost of living are making things difficult for lots of people right now but keeping warm is the key to living well with Raynaud’s. 

“We understand that not everyone will be able to afford to keep their homes heated at a consistent temperature, so you can also stay warm by wearing lots of thin layers, thermal socks and gloves, and using heated slippers and blankets. We would hate for anyone to suffer in silence this winter.” 

The charity has written to the UK government calling for more support to keep heating affordable for people with Raynaud’s this winter and beyond. Read the full letter at www.sruk.co.uk/about-us/news/raynauds-energy-campaign 

SRUK also has a factsheet available, which is packed with tips to help people keep warm this winter. This is available from the SRUK website at www.sruk.co.uk  

Walk This Way with SRUK

People living across Scotland are being invited to lace up their trainers and get walking this summer in aid of people living with a chronic, life-limiting autoimmune condition called scleroderma. 

The charity Scleroderma and Raynaud’s UK (SRUK) is asking people to get involved with its nationwide walking challenge and raise money for vital research and support. Participants have the option of making their walk physical or virtual and as long or as short as they need.  

The fundraiser – called The SRUK Walk – aims to raise at least £19,000 to represent the 19,000 people in the UK living with scleroderma. The money will be used to support people affected by the condition and fund research to improve diagnosis, treatment and quality of life. 

Sue Farrington, SRUK Chief Executive, said: “Scleroderma affects thousands of people and there is currently no cure. Through our research, information and support services we’re taking steps to improve the lives of everyone affected by scleroderma. And now we’re asking the public to quite literally do the same. 

“The past year has taken a toll on many people with scleroderma who have been forced to shield and, in some cases, have their treatments put on hold. We want to make sure we can be there for everyone who needs us, which is why we’re asking people to put their best foot forward – a simple act that will help make a world of difference. 

We know how supportive people in Scotland can be, so we’re hoping as many people as possible get involved.”  

Scleroderma occurs when the body’s immune system becomes overactive and begins to attack healthy tissue, causing hardening of the skin and, in some cases, other organs. It is most common in adults over the age of 40 and can also affect teenagers and young adults, although this is much rarer. 

SRUK is the only charity solely focused on improving the lives of people with scleroderma and Raynaud’s in the UK through information, support and ground-breaking research. 

To get involved with The SRUK Walk or to find out more, visit www.sruk.co.uk/walk  

Many Scots unaware of incurable condition as common as hay fever

  • Raynaud’s symptoms despite it affecting 1 in 6 people in the UK.
  • The charity also found that many Scots are likely to dismiss common symptoms rather than visit their GP.
  • Raynaud’s is a painful and incurable condition. For some, it can be also be a sign of other serious health problems, including the potentially life-threatening condition, Scleroderma.
  • SRUK is calling on people across Scotland to visit its website to find out the signs and take its online diagnosis test.

More than 24 million people in the UK – nearly one in two adults – cannot name any of the symptoms of Raynaud’s, an incurable and painful condition that affects as many people as hay fever, according to new figures released this week.

The charity Scleroderma and Raynaud’s UK (SRUK), which commissioned the research, says the data highlights a ‘shocking’ lack of awareness across the UK with millions more likely to dismiss symptoms and avoid their GP.

In Scotland, 49 percent of those surveyed said they could not name any of the signs of Raynaud’s.

Raynaud’s is a chronic condition that affects around 10 million people in the UK – around one in six – and has no cure. Cold temperatures and stress can trigger ‘attacks’, which causes blood vessels to constrict and temporarily stop blood flow, most commonly to the hands and feet. During an attack, affected areas turn white and blue, and become numb. As the blood begins to return, limbs turn red and become painful.

For around 300,000 people it could also be a sign of a serious underlying condition, including the potentially life-threatening autoimmune condition, Scleroderma. The charity says early detection is vital to manage Raynaud’s symptoms effectively, minimise attacks and diagnose any underlying illnesses.

Common signs of Raynaud’s are extremely cold hands and feet, chilblain-like inflammation and colour changes to the skin. However, SRUK has found that many people do not think these would warrant a GP visit. 

In Scotland, around one in four of those surveyed (24 percent) reported experiencing extremely cold fingers and/or toes more than once, but 47 percent said they would not see their doctor if they experienced this regularly.

Likewise, more than four in 10 (43 percent) said they would not visit their GP over frequent colour changes in the skin, despite nearly one in five (19 percent) reporting this as something they have experienced more than once. Meanwhile, one in two people (50 percent) said they would not book a GP appointment for frequent chilblains on their hands and feet.

Sue Farrington, SRUK Chief Executive, said: “Raynaud’s is as common as hay fever or arthritis and can have just as big an impact on daily life if not more so, but these figures highlight just how woefully unaware most of us are.

“Raynaud’s itself is not life-threatening, but it can be very painful and have a huge impact on everyday life – during an attack, simple things like buttoning a coat, turning a key in a front door or handling bank cards can become virtually impossible.

“Around 3 million people with the condition have to live with this all year round and attacks can be difficult to manage, particularly without any expert health advice. It may also be a sign of something more serious, so it’s not something to be swept under the carpet and ignored – it’s vital people know the signs and visit their GP.”

In Scotland, around one in four people surveyed (24 percent) reported that they would be less likely to visit their GP if they were to experience extremely cold hands and feet or chilblain-like inflammation because of the Covid-19 pandemic.

Claire, 46, who lives near Glasgow in Scotland, has been living with Raynaud’s since her twenties. Initially dismissing the symptoms, she was formally diagnosed at the age of 40.

Claire said: “Even just opening the fridge and taking something out like the milk carton can affect my fingers. When I’m making dinner, if I take a plate out of the cupboard, the coldness of the plate – or even the cutlery – can start a Raynaud’s attack. It’s horrendous. It takes about half an hour to get the feeling back into my fingers.”

Claire says she regrets not seeing her GP earlier: “I do wonder if I had been diagnosed earlier whether my Raynaud’s have become this severe, but I didn’t want to bother them with what I thought was a little nerve damage.

This February, Raynaud’s Awareness Month, SRUK is calling on adults to make time to understand the signs of Raynaud’s and for those who may be experiencing symptoms to take the charity’s simple online test.

The test, which has been developed in conjunction with clinical experts and delivers results in around 60 seconds, will allow people to find out more about Raynaud’s, how to manage it and advise if a GP visit is required.

For more information about Raynaud’s, the signs to look out for and how to manage symptoms, or take SRUK’s online test, visit www.sruk.co.uk/testme