Sharon's Story

Sharon began noticing her hands getting extremely cold and her fingers changing colour in September 2019, but didn’t think much about it.

“I had heard of Raynaud’s and I’d read about it in health magazines and newspapers over the years, but I just thought it was something that meant you got cold fingers and toes.”

She took some photos of her hands and feet during what she now knows was a Raynaud’s attack, when her fingers and toes turned white which she mentioned in passing during a visit to her GP in November 2019. Her GP looked at the photographs and immediately referred Sharon for a blood test.

“She told me from the beginning that it might be Raynaud’s, but there was a possibility that there could be something else going on too.”

Once the blood test results came back Sharon was referred to a rheumatologist whom she saw in January 2020.

“As I went into my appointment to see the consultant, my hands and toes started to lose colour and feeling, so I was able to show them - it was quite good timing!” Sharon says. “The consultant took one look at them and referred me on to his colleague, a specialist in Scleroderma. I was seen very quickly and that was when I was told I had Scleroderma.

“I wasn’t aware that Raynaud’s was an indicator for other conditions.”

As an admin worker, Sharon says Raynaud’s attacks can make her job challenging: “If it’s a bit cold in the office, or I’ve been cold on the way to work, it can take such a long time to get the feeling back into my fingers. Trying to type with them is very difficult, especially when you lose the feeling and the colour goes - you can’t feel a thing. But when the blood starts coming back, it starts to hurt. It’s almost like a throbbing pain. It is painful.

“I try to warm my hands up as quickly as possible, but it’s just amazing how quickly an attack can happen and then how long it can take to get better. I try to stay as warm as possible so I don’t get these attacks, but sometimes it just catches you unaware.

Sharon says little things can trigger an attack such as handling chilled or frozen food from her fridge or freezer, taking wet laundry out of the washing machine, touching kitchen or bathroom taps, holding a glass of cold water or even handling cutlery.

“Going into a slightly cold, new environment is enough to bring on an attack and it can take hours to get the feeling and the colour and circulation back into your hands,” she adds. “Even something as simple as walking down a chilled aisle in a supermarket, I can start to feel my fingers and toes go. Within a few seconds I’ve lost all the colour in my fingers.”

Sharon was lucky as it took just a matter of months from her initial GP visit to receiving her Raynaud’s and Scleroderma diagnoses and is pleased she didn’t ignore the signs.

“I was going to tolerate it, but I’m glad I didn’t because it’s led to my Scleroderma diagnosis, which is this rare, life-limiting condition. If I hadn’t gone to my GP I’d be none the wiser. Although there’s no cure for Scleroderma or Raynaud’s at least they can be treated, and when you know more about the condition there’s more you can do to look after yourself. My consultant says it’s very important to keep your core body warm. I wasn’t very good at keeping myself warm before, but I do make the effort now with gloves, socks, boots and thermal tights and vests. Before, I would go out the house with flat shoes on, perhaps wearing some thin tights or no coat.”

Since her diagnoses, Sharon’s heart, lungs and blood pressure are being monitored annually. She is also currently taking amlodipine to try to reduce her Raynaud’s attacks:

“Unfortunately, I am still having attacks, I’m not sure if they’re as severe as before, but I am still having them, so it’s something I still need to speak to my consultant about.”

In February 2021 her consultant advised increasing the dose as she was still experiencing attacks. Sharon is waiting to see if this helps to reduce her Raynaud’s attacks.

Sharon received her Scleroderma diagnosis in January 2020, just before the Covid-19 pandemic and first UK lockdown. While she hasn’t been able to access physical support groups yet, she says SRUK has helped her enormously.

“It was a difficult time to be diagnosed at the start of a pandemic, but thank goodness for charities like Scleroderma and Raynaud’s UK,” says Sharon. “I’ve managed to get some really good information from them and watched a couple of their webinars, which have been very useful. They also sent me lots of literature in the post and I’ve purchased some items from their online shop, like the silver lined gloves. There’s so much information on the website. It’s very clear.”