Deb's Raynaud's Story
"If I’m just going shopping, walking around the supermarket, which has chilled areas, I can get a Raynaud’s attack. I’ll be in quite a lot of pain and then I’ve got to get my cards out to pay, but I can’t feel anything because there’s no blood in my fingertips.”
Deb, 57, has lived with Raynaud’s since a young age. Brought up not to discuss her health, she was formally diagnosed at the age of 53 after she visited her GP about something else entirely.
Deb remembers when she was 10 years old she was walking down the road and realised her hands were hurting, but didn't know why. Then, In her early teens she noticed her fingers changing colour from white to blue/black and then red.
“I just ignored it and wore gloves,” Deb explains. “I was brought up to be anti-medication and ‘don’t talk about your health’, so that’s what happened.”
As Deb got older, her Raynaud’s attacks had a significant impact on her ability to perform everyday tasks that so many take for granted.
“I used to walk home from work feeling as though I was walking on bare bones, as it happens in my feet too. Often, I'd get to my door and have no feeling in my hands, they were so cold. Normally, you’d reach into your bag and grab your keys because you can feel them, but I couldn’t because there was no blood in my fingers. Gripping the keys to turn them in the lock can take a very long time and you’re in a lot of pain as well. Pre medication, I could be stuck outside my house in the cold, rain, wind or snow struggling for 5 or more minutes. It's excruciating. I always describe it as though someone has smashed them with a hammer!”
It wasn’t until she was 28 that Deb realised she had Raynaud’s. While on a train she pulled into a station and saw a poster showing a hand with white fingers covered in ice and icicles and asking ‘is this you?’
Deb recalls: “I thought ‘Oh! That’s me!’ It was definitely a eureka moment. But then I carried on reading my magazine, going off to wherever I was going. I just put up with it.”
For Deb, her Raynaud's diagnosis came almost by accident: “I had been promoted to an intensive role in social care and was exhausted with a lot of pain in my body and rashes on my hands. After abnormal blood tests, I was referred by my GP to Rheumatology as I was feeling so unwell generally and was initially diagnosed with undifferentiated connective tissue disease - UCTD - with Raynaud’s as part of that.”
Eventually, after speaking to her consultant, Deb was given modified release nifedipine, which she says has helped enormously, significantly reducing the more severe Raynaud's symptoms.
While most people might associate the signs of Raynaud’s with cold weather, Deb says she experiences attacks at any time of year.
“Pre-nifedipine, it could even happen in the summer. I could be sitting outdoors in the evening, having a drink with colleagues and would have to hold my beer with big, fat gloves on - or just go home. Thinking about it, people must have thought I was being bit precious, but I'd got to the age where I didn't care.
“Nifedipine MR has been discontinued and I'm currently on lacidipine which doesn't work as well for me. If I’m just going shopping, walking around the supermarket, which has chilled areas, I can get a Raynaud’s attack. I’ll be in quite a lot of pain and then I’ve got to get my cards out to pay, but I can’t feel anything because there’s no blood in my fingertips.”
Deb swears by wearing a lot of layers to keep her core temperature up, staying hydrated and following /nutritious diet. She also uses Canada Goose gloves and hand warmers to help keep her hands warm to help prevent a Raynaud’s attack.