Raynaud’s phenomenon: THIS condition as common as HAYFEVER could be life-threatening
Raynaud’s phenomenon: The condition can turn hands and feet blue
Caroline Goldstein, from Bristol, a mum and former hospital doctor, began experiencing symptoms for Raynuad’s phenomenon in her early twenties at medical school after finding her hands and feet would become extremely cold and painful.
She put it down to poor circulation but as her symptoms became worse and she got older, Caroline and was forced to manage the condition by carrying extra layers of clothes.
However, the condition got worse when Caroline had a baby.
“When I first started breast feeding I suddenly started to get really bad pain and noticed that the colour of my nipples had changed, but I didn’t know what it was. They were going white and blue.
Raynaud’s phenomenon: Caroline, with her family
“All the GPs I went to were useless,” added Caroline.
“They didn’t know what was wrong, they thought it could be mastitis or suggested thrush medication.”
Caroline said the pain of breast feeding made her feel like ‘screaming’ because it hurt so much as she would feel spasm and suffer severe pain before and after.
Symptoms of Raynaud’s include cold fingers and toes, colour changes in the skin in response to cold or stress, colour changes in the affected area to white, blue and red, numbness, tingling or pain in the fingers and toes and stinging or throbbing pain upon warming up or stress relief.
Some patients with Raynaud’s can go on to develop a more serious connective tissue disease, called scleroderma, which can cause disability and life-threatning, so experts warn it is important complications of the condition can be properly treated.
Scleroderma is a rare, chronic condition of the immune system, blood vessels and connective tissue and can attack healthy tissue in the body and can affect the internal organs.
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Other parts of the body can be affected by Raynaud’s including the ears, nose, lips and nipples and the symptoms of the condition can last for several hours.
Experts said there may be as many as 10 million people with the condition in the UK.
“Any one who has had a baby can deal with pain,” said Caroline. “But this was different, I just didn’t know what it is. When you try to feed your baby you know it is going to be hard and hurt – but this was a different story.”
Caroline said that because she was unaware that it was possible for Raynaud’s to present in nipples, she did not connect the symptoms to the pain she felt in her hands and feet.
Raynaud’s phenomenon: Caroline said it was excruciating breastfeeding
Getting food out or putting food into the freezer is really sore
“The pain in my hands and feet became so much a part of life,” she said. “I was in my early 20 at medical school when I first started experiencing it. It got really painful when I was cold.
However it was only after weeks of suffering and visiting a number of doctors that Caroline found a GP and was treated for Raynaud’s phonenomenon.
“Putting clothes on really helps,” Caroline added. “It’s the temperature change that cause the trouble. I wear two pairs of gloves in winter. I wear ski coats when it’s not the weather.
“That’s why breastfeeding was so tricky – it is warm when it’s happening but when they aren’t it’s a real shock.”
Caroline said hot baths, and getting food out or putting food into the freezer is really sore.
Raynaud’s phenomenon: The condition is worse in cold weather
“I have to get my husband to do it for me,” said Caroline.
Raynaud’s is a condition that affects the blood supply in the body’s extremities and many people living with the condition will regularly experience pain and discomfort.
It is caused by over-sensitive blood vessels in the body’s extremities and in many cases, no cause is identified, although it’s sometimes linked to other health conditions.
When the body is exposed to cold temperatures, the extremities, such as your fingers and toes, lose heat.
NHS Choices said this happens because the small blood vessels under the skin spasm, slowing down the blood supply that is helping to preserve your body’s core temperature.
Despite being as common as hay fever and arthritis in the UK over three quarters of people have never heard of Raynaud’s or don’t know anything about the symptoms.
Raynaud’s phenomenon: SRUK said many people ignore the symptoms
However these symptoms can be relieved using various treatments.
Despite a quarter of people surveyed by Scleroderma and Raynauds’s UK (SRUK) saying that they had experienced one or more of these most common symptoms repeatedly, only 10 per cent on average have visited their GP about this.
The organisation said worryingly, despite Raynaud’s being more common in women than men, they are less likely to visit their GPs if experiencing symptoms.
Scleroderma and Raynaud’s UK said: “Despite being as common as hay fever and arthritis in the UK over three quarters of people have never heard of Raynaud’s or don’t know anything about the symptoms and just 4 per cent of people can confidently identify the symptoms of Raynaud’s.
Raynaud’s phenomenon: People worried about symptoms should see a GP
Sue Farrington, Chief Executive of SRUK, says: “We know that many people do ignore the symptoms and just get on with life, not knowing they have Raynaud’s nor that treatment is available in many cases to help people cope with the painful and sometimes life-changing effects of the condition.
“Beyond a lack of awareness, our research also shows stigma and misunderstanding around Raynaud’s and Scleroderma, with many people saying they would be embarrassed to admit they had the conditions, that they would be worried they would pass it on and that they wouldn’t know how to get help or support.
“This needs to change – Raynaud’s can be a minor but uncomfortable inconvenience, but for those more seriously affected by Raynaud’s or Scleroderma, it’s crucial that they seek medical treatment and support as early as possible.”
SRUK currently supports over twenty two thousand people in the UK living with the conditions but the charity said this is just the ‘tip of the iceberg’.
This comes after a woman spoke about about a skin condition called hidradenitis suppurativa which causes recurrent, painful abscesses and nodules under the arms and groin.