Steph's Story 

Steph, 39, is a postwoman and has been living with Raynaud’s since she was a teenager. Despite living with symptoms for decades, she had never visited her GP, believing it to be ‘one of those things’. Steph was diagnosed in December 2019 after a Raynaud’s attack saw her taken to A&E. The condition affects her hands, feet, ears and nose.

Steph had never heard of Raynaud’s before her diagnosis. Growing up, she regularly experienced cold limbs, but believed it was something that only affected her family.

“I went through life pretty much just wearing lots of layers on my hands and feet, and sitting at home under blankets. To a degree, it never bothered me because I didn’t know any different.”

In December 2019, Steph experienced what was her most severe Raynaud’s attack, which resulted in a visit to her local hospital’s A&E department.

“I was at work and it was a cold, cold day,” explains Steph. “I noticed that my hand was getting colder and colder, and by the time I got home it had actually turned blue. I sat at home for a good couple of hours under a blanket, but it wouldn’t warm up. It wouldn’t turn back to its normal colour, so me and my husband decided to take me to the hospital.”

While in hospital, Steph was tested for blood clots and had CT and MRI scans. She was there for 5-6 hours in total, but continued to be an outpatient for 6 weeks while doctors investigated. It was during this time she was told she had Raynaud’s and was prescribed nifedipine, a blood pressure drug that can also help prevent Raynaud’s attacks.

“I can’t remember what tablets the doctors gave me at first, but they didn’t work so I had to go back to hospital a couple of weeks later. I saw a different doctor who prescribed nifedipine and that really helped the swelling and the coldness in my hand. The coldness from everywhere in my body disappeared as soon as I started taking it.”

Steph has found that her Raynaud’s has slowly become worse over the years: “When I was younger, even up until 2018-19 it wasn’t that bad. I would have to be really, really, really cold for my hands, feet, ears and nose to hurt. Now, it doesn’t take a lot for them to start hurting. If I don’t wear gloves it’s painful and I can’t grip stuff, but the bits that hurt the most are probably my nose and ears because I can cover everything else up.”

As a postwoman, Steph finds the cold winter months particularly difficult, although has found ways to manage.

“The nifedipine helps,” she says. “I also put thermal socks on with my work boots, I’ve got copper insulated gloves now and ear muffs - people look at me like, ‘it’s not that cold’ and I’m like, ‘yes it is!’ Preventing Raynaud’s is much easier than treating it after an attack.”

Steph is currently under the care of a rheumatologist to monitor her progress and that management of her condition seems to be going well: “I saw the rheumatologist once every 3 months last year and now I’m out on my own - flying solo - on the basis that the nifedipine is working. I just have to monitor my blood pressure to make sure it doesn’t fall too low.“