As someone living with primary Raynaud’s disease, the winter months can be the most challenging.

The drop in temperature means the risk of painful extremities, the need to wrap up against the cold and to keep warm in any way that I can.

Over 10 million people are affected by Raynaud’s disease in the UK (pronounced Ray-nodes), and it has no cure. It is as common as hay fever, but far less people know anything about it. Recent research (Feb 2021) commissioned by Scleroderma and Raynaud’s UK, found that more than 24 million people in the UK – nearly one in two adults – cannot name any of the symptoms of Raynaud’s. The report noted that it ‘highlights a “shocking” lack of awareness’ across the UK with millions more likely to dismiss symptoms and avoid their GP.

It recently made news headlines after being highlighted by Virgin Radio presenter Chris Evans, who suspected he had Raynaud’s disease after suffering painful hands when out cycling in Baltic weather conditions.

Raynaud’s is a condition that means the small blood vessels in the extremities such as the hands, feet, fingers or toes are over-sensitive to even the slightest changes in temperature, cold conditions and sometimes emotional stress. It is named after Maurice Raynaud, the doctor who first acknowledged it.

Scleroderma and Raynaud’s UK (SRUK) explain symptoms of a Raynaud’s attack

“A Raynaud’s attack can be very uncomfortable, and sometimes quite painful. It can also make everyday tasks, like buttoning a jacket or unzipping a purse, very difficult. Raynaud’s symptoms generally affect the fingers and toes, but all extremities can be involved, including the hands, feet, ears, nose, lips, tongue and nipples.”

Typical symptoms of Raynaud’s are:

• –        A colour change in the extremities 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

Primary Raynaud’s disease is often mild and there are ways to manage symptoms; such as keeping warm, keeping active and new developments with treatments and medication. Herbal remedies suggested are ginkgo biloba (from a Chinese plant), hawthorn and use of warming essential oils such as ginger or cayenne pepper. Holland and Barratt were particularly helpful to me recently.

Secondary Raynaud’s disease is more serious and often caused by underlying health conditions such auto immune diseases, like Scleroderma or lupus. Secondary Raynaud’s needs more investigation and closer monitoring due to ulceration and sores.

SRUK is the only UK based charity providing support and advice for people who have Raynaud’s disease. This includes information for those recently diagnosed, a test to check if you may have the condition and links to support groups online and in your local area. There are several support groups across the UK, but sadly none currently in Wales.

Those with Raynaud’s disease, may find the following advice from the NHS useful.

• –        Keep your home warm
• –        Wear warm clothes in cold weather, particularly on cold hands and feet – hand warmers are also a handy thing to have with you when you’re out and about.
• –        Exercise regularly as this improves circulation
• –        Try breathing exercises and yoga to help relax
• –        Eat a healthy, balanced diet.

Things to avoid are smoking and caffeine as this can trigger a Raynaud’s attack.

I was diagnosed with Raynaud’s disease when I was a teenager after suffering pain in my hands and feet. My anxiety seemed to make it worse and medication for that would make me more susceptible to the cold. Now, in my mid-thirties, I have found symptoms have improved. I try to avoid getting cold, always wrapping up warm in winter and bringing extra layers with me wherever I go, just in case. Even in the summer months, I often find my temperature can drop and my hands and feet are most affected by the cold. I also take Gingko Biloba tablets daily and find they help.

SRUK state that their mission is,

“to improve the lives of everyone affected by scleroderma and Raynaud’s… by investing in research, improving awareness and understanding of the conditions and providing information and support to all those affected.”

I have certainly found them to be a useful source of support and connection during my challenges with Raynaud’s disease. February is Raynaud’s awareness month, with the opportunity for people to get involved by spreading the word, hosting a catch up with a coffee and following SRUK on social media to keep the conversation going – #Knowraynauds

SRUK have several videos online of other sharing their stories as well as interviews with key medical figures in the treatment of the condition.

“Being there for our community when they need us is paramount – we do this through our helpline, local support contacts, support groups and our online forum. We also run regular educational events and have a yearly conference to bring people together.”

Find out more from SRUK here.  Also try http://www.Raynaudsdisease.com for more information on living well with Raynaud’s.