Features

Clinical: Raynaud's syndrome

11 January 2021

A common condition that affects around one in six people in the UK, Raynaud’s syndrome, continues to be a hidden illness due to lack of awareness, writes journalist Julie Penfold

The winter months can be especially challenging for people living with Raynaud’s phenomenon, also known as Raynaud’s syndrome and Raynaud’s disease. While some people will only experience a worsening of their Raynaud’s symptoms in the winter, others are faced with debilitating discomfort all year round because of their increased sensitivity to even the slightest changes in temperature.

‘It’s estimated that up to 10 million people in the UK are living with Raynaud’s [SRUK, 2020], and that’s nearly as many people as have arthritis or hay fever,’ says Sue Farrington, chief executive of Scleroderma and Raynaud’s UK (SRUK). ‘The majority of people living with Raynaud’s will be seasonally affected. But around 3% will have primary Raynaud’s (the most common type) all year round, where the slightest drop in temperature can trigger a painful episode. For example, they could be in a supermarket, and walking through the refrigerated aisles will bring on a Raynaud’s attack.’

What is Raynaud’s?

Raynaud’s is a condition affecting blood circulation and is characterised by an oversensitive and extreme reaction to cold temperatures. It mainly affects the hands and feet, particularly the fingers and toes. But it can also affect the nose, ears, lips and nipples (SRUK, 2020a).

‘Raynaud’s phenomenon describes excessive narrowing of the blood vessels in response to cold exposure or emotional stress,’ explains Dr John Pauling, consultant rheumatologist at the Royal National Hospital for Rheumatic Disease and a member of the British Society of Rheumatology. ‘This narrowing of the blood vessels is actually quite a healthy response to cold exposure, and it’s one of the ways in which the body prevents our core temperature from being threatened. But for people with Raynaud’s, this happens excessively. As a result, even a mild cold stimulus could make the blood vessels narrow and clamp down, reducing blood flow to the fingers.’

When the blood vessels narrow in response to the cold, it can lead to a noticeable colour change in the affected areas. During a Raynaud’s attack, the skin will firstly turn white (due to decreased blood flow), then blue (as the blood vessels contract and deoxygenation occurs), and then to red (reactive hyperaemia) as the circulation returns (NICE, 2020).

‘When an attack abates and the blood supply starts to return, there can sometimes be too much blood flowing and this can result in the fingers becoming a deep red colour,’ explains John. ‘You can also get sensory symptoms and experience a tingling and burning sensation. Sometimes the pain is worse at the end of an attack when the fingers have become deep red and engorged with blood. When people experience this pain, numbness and tingling, they can find it difficult to use their fingers properly. For some people living with Raynaud’s, this could be happening on a daily basis.’


Five symptoms of Raynaud’s

  • Unusually cold fingers and toes (as well as the ears, nose, lips and nipples)
  • A colour change in the skin in response to temperature changes or stress
  • Colour changes in the affected areas – from white (pallor) to blue (cyanosis) and then to red (rubor)
  • Numbness, tingling or pain in the affected areas
  • Stinging or throbbing pain upon warming or stress relief SRUK, 2020a

Primary or secondary?

Primary – or idiopathic – Raynaud’s is the most common form; for most people it will be relatively mild and manageable. It’s thought that primary Raynaud’s is connected to disruptions in the nervous system’s control of blood vessels.

One of the misconceptions about Raynaud’s is that it only affects adults. In fact, primary Raynaud’s usually starts in adolescence and is more common in teenage girls and women (Versus Arthritis, 2018). But both forms of the condition can also affect men and children – although it is rare in young children and babies.

‘Primary Raynaud’s is very common and can happen in people who are otherwise healthy,’ explains John. ‘Young people will typically start to have symptoms before the age of 18, and we think the sex hormones are important in explaining why symptoms develop around the time of puberty and why it’s much more common in women than men.’

In contrast, secondary Raynaud’s has an underlying cause, usually an autoimmune rheumatic disease such as scleroderma or lupus. It can lead to heart, kidney, lung or gastrointestinal problems. However, it’s far less common – only 10% of people with Raynaud’s will develop an associated condition (SRUK, 2020b). Raynaud’s is driven by the underlying autoimmune condition and this causes the blood vessels to overreact. It can lead to complications such as digital ulcers (sores on the fingers or toes). The onset of Raynaud’s over the age of 30 is also a red flag for clinicians to suspect secondary Raynaud’s (NICE, 2020). John adds that it is very rare in young people.

‘Secondary Raynaud’s is far more serious, so early diagnosis is really important as some of these connective tissue diseases can be life-threatening,’ says Sue. ‘When someone has Raynaud’s, we would like GPs to record this in their patient notes. That’s because 97% of people with scleroderma first present with Raynaud’s. We are also seeing more and more young women coming to us in their 20s and 30s who have scleroderma.’

Seeing a GP is the first port of call to get a diagnosis. Primary Raynaud’s is often diagnosed based on a patient’s symptoms and their medical history. A cold simulation test might also be carried out, where the hands are immersed in cold water and a small device measures how quickly they return to a normal temperature. If an underlying secondary cause is suspected – due to swelling, puffiness or sores on the fingers, acid reflux or painful joints – rheumatology investigations include antinuclear antibody tests and a nailfold capillaroscopy (SRUK, 2020c).


How you can help

Raynaud’s effects on the nipples can make breastfeeding particularly painful. Health visitors can help by providing advice on how to reduce symptoms, including severe, debilitating pain and throbbing. SRUK advises that women should breastfeed in a warm environment, use heat aids such as microwavable breast pads, and wrap up in a blanket as soon as the feed is over.

SRUK’s Sue Farrington says school nurses can be a powerful advocate for a young person living with Raynaud’s. ‘You can make the case for them to wear gloves or extra clothing, or be given permission to do an exam in a warm room,’ she says. ‘Knowing that your school nurse understands your condition and the challenges it brings, and can support you and advocate on your behalf is so important.’ 


 

Living with Raynaud’s

Primary Raynaud’s can be well managed via lifestyle changes, including smoking cessation, eating well, exercising regularly and reducing stress. Maintaining a core body temperature and healthy body weight is also important. Wearing thin layers to naturally build up heat can help, in addition to wearing gloves and a scarf to avoid the nape of the neck being exposed. In addition, Sue advises not having cold drinks straight from the fridge and mitigating the cold from the fridge or freezer by wearing insulated gloves.

‘There’s a huge amount that people can do without using any medications to manage their symptoms,’ says John. ‘Most patients with primary Raynaud’s phenomenon will not require any specific drug treatment.’

If medications are needed, options include nifedipine, sildenafil and the antidepressant drug, fluoxetine.

Young people living with Raynaud’s may face challenges that older people are less inclined to find problematic. ‘There is that embarrassment of being different, and that’s compounded when people don’t know about Raynaud’s and it isn’t talked about,’ says Sue. ‘School nurses can help young people by understanding that they may need to wear gloves and sometimes their coat indoors if they are feeling the cold. We had to intervene in one situation to ensure a young girl could do her exam in a warm room rather than an open hall. There was also an instance where another girl was wearing her gloves in class, and her teacher thought she was making a fashion statement. There’s such a lack of understanding about this real condition that can be very, very painful.’

John says it’s important that young people with Raynaud’s avoid smoking, including vaping. ‘Nicotine encourages the blood vessels to narrow further, which could make symptoms worse.’

He suggests the condition might also affect a young person’s ability to participate in outdoor sports, such as hockey or netball, especially in winter. ‘They may find it more difficult if their fingers are feeling very cold,’ he says. ‘Even when steps are taken to mitigate their symptoms, such as keeping themselves covered up or wearing gloves when others don’t need to, it could lead to embarrassment, so it can be challenging. But the recommendation certainly isn’t one of avoiding exercise or not going out with friends. It’s about adopting measures that will help to reduce the impact of symptoms. Exercise is good for our vascular function and our general health, so it could really help matters.’  


Resources  

  • Scleroderma & Raynaud’s UK is the only UK charity dedicated to improving the lives of people with scleroderma and Raynaud’s sruk.co.uk  
  • NHS advice on checking for symptoms of Raynaud’s nhs.uk/conditions/raynauds  
  • Factsheet from SRUK on identifying Raynaud’s in breastfeeding mothers bit.ly/SRUK_breastfeeding

References

NICE. (2020) Raynaud’s phenomenon. See: https://cks.nice.org.uk/topics/raynauds-phenomenon (accessed 24 November 2020).

SRUK. (2020a) Raynaud’s disease: the facts. See: sruk.co.uk/raynauds/what-raynauds (accessed 24 November 2020).

SRUK. (2020b) What causes Raynaud’s? See: sruk.co.uk/raynauds/what-causes-raynauds (accessed 24 November 2020).

SRUK. (2020c) Raynaud’s – getting diagnosed. See: sruk.co.uk/raynauds/raynauds-getting-diagnosed (accessed 24 November 2020).

Versus Arthritis. (2018) Raynaud’s phenomenon. See: versusarthritis.org/about-arthritis/conditions/raynauds-phenomenon (accessed 24 November 2020).

Image Credit | Thermal Vision Research

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