It’s a debilitating condition that can leave you with ‘zombie fingers’ and pain “worse than giving birth.”
Up to 10 million people are affected by these symptoms in the UK, yet research reveals that only 4% realise they may have Raynaud’s disease.
Worryingly only 10% of people on average who had Raynaud’s symptoms – which get worse in the winter – would visit a GP.
Amid another cold snap, support group Scleroderma & Raynaud’s UK (SRUK), has launched an online test to help identify whether or not you have Raynaud’s.
Typical symptoms include, cold fingers and toes that change colour from white, to blue/purple and then red.
Extremities that go numb, tingly or cause pain – including the ears, nose, lips, tongue and even nipples or your bottom.
Symptoms can last for a few minutes to several hours.
One person who is all too aware of the problems of living with Raynaud’s is Shepley resident Rachel Ogden, 42.
Rachel has been dealing with the condition since she was a little girl.
She recalled: “I have a very strong memory of being barefoot in the gym hall aged seven and my teacher looking horrified at my bright purple feet.
“I was only officially diagnosed as a teenager.
“The first obvious signs started age 14 when my fingers would regularly become numb and dead white especially when outside playing hockey.
“I used to have to run into the changing rooms at half time to put them under the hot water tap and get some blood back in them so that I could keep hold of my stick.
“I presumed this happened to everybody as all the other hockey girls would complain about feeling cold, but eventually I realised the ‘zombie finger’ look was not normal, and I was actually in a lot more pain than anybody else.”
Rachel’s symptoms got worse when she moved to cold and windy Yorkshire in her 20s.
“My symptoms certainly stepped up a gear,” she added.
“It is a beautiful part of the country and I absolutely love living here, but it’s cold, wet and windy climate is definitely a challenge for a Raynaud’s victim.
“My hands are by far the most affected by Raynaud’s. They are not pretty, and I am embarrassed for people to look at them.
“They vary in colour from white, red, blue, purple and are blotchy.
“The fingers can be swollen, and I usually have chilblains on them in the winter, which don’t look or feel good, but thankfully, I have not had any ulcers.
“The worst part of Raynaud’s is the pain when an attack hits.
“It’s not the numbness from the cold that hurts – I don’t really have much sensation when my fingers are white – but it’s the agony when the blood slowly starts trickling back in.
“On particularly bad occasions, the pain is enough to make me physically sick.
“I can only describe the sensation as feeling like someone is sticking red hot needles underneath my fingernails and then squeezing my hands through a mangle.
“I have given birth twice but I can honestly say neither experience was as painful as my worst Raynaud’s attack.
“Most people are aware of Raynaud’s causing cold hands and feet, but as I’ve got older, I’ve realised how much it affects my nose, lips, nipples and even my bum cheeks!
“My nose is always cold to touch and I go through loads of green concealer to try and tone down it’s redness.
“I find if any of those areas cool down too much I can start to feel unwell.”
Rachel’s life can be a struggle as dealing with cold air or water can cause attacks.
Apart from the obvious, innocent situations such as air-conditioning, cold drinks in bars, and even selecting frozen food in the supermarket, can cause her symptoms to flare up.
“Having Raynaud’s is frustrating,” she said.
“It slows me down, makes me clumsy, is painful and stops me getting that hand modelling contract!”
While it has its downs, there are also ups, with Rachel having the perfect excuse to avoid doing the washing up and being able to provide her own cold compress for bumps and bruises.
She added: “I like to agree with the old saying “cold hands, warm heart”, I feel it must be true.
“I am very lucky to have lovely, caring family and friends who are there for me and help keep me warm from the inside; the absolute best sort of treatment.
“Although there are many times I get really fed up and have a good old moan about it, I mostly feel I can deal with it.
“I find organisations like Scleroderma and Raynaud’s UK (SRUK) so helpful as they provide good advice and tips, keep me up to date with latest research, sell great products online, and share stories of other people who can empathise with my symptoms.”
Sue Farrington, SRUK chief executive, said: “We want everyone to get to #KnowRaynauds this February, so they can access the support and advice to help them better manage their condition.
“Another reason to know if you have Raynaud’s is because it can be the first sign of an underlying rare condition such as scleroderma or lupus.
“One person in every hundred will go onto develop an auto-immune condition.
“This is why we shouldn’t ignore the symptoms. Early diagnosis is vital to ensure people can be screened and if necessary get treated much sooner.”
For more information about Raynaud’s, the signs to look out for and how to manage symptoms, take SRUK’s online test, go to www.sruk.co.uk/testme and download a Raynaud’s information pack today.