Helen was diagnosed with Raynaud’s and limited systemic limited sclerosis just before the Covid-19 pandemic. She has also tested positive for the antibody for the more severe type of scleroderma.
It can be difficult to manage the Raynaud’s at home, especially if you can’t have the heating on. I use hand warmers, dress in layers and use electric blankets, but sometimes I must choose between having an attack or turning the heating on.
Helen first noticed the signs of Raynaud’s around the winter of 2016, when she was in her 40s. She remembers she was working in an office in the middle of winter; the heating broke, and her fingers went black because it was so cold. Then, in 2019, she was aware that her fingers were getting puffy as well, and was noticing this more and more. She never sought a Raynaud’s diagnosis, because she had heard of Raynaud’s and so thought that she just had it, and didn’t think about medication.
A referral to rheumatology confirmed that she had scleroderma and Raynaud’s. The rheumatologist noticed the tight skin on her hands and little swellings and lumps on her cuticles, which were the start of ulcers. She was also finding it hard to whistle and use a straw – it was as if her lips were numb. She was grateful the consultant pieced these symptoms together. He explained how the Raynaud’s can be part of scleroderma, which she never knew before.
She says of her Raynaud’s:
If I do have an attack, then I’m not able to use my hands until the sensation comes back. I can’t type, open packets or even use a knife and fork until it has passed. At work, my employers are good, and they make reasonable adjustments around my condition. My workplace is often a warmer environment than at home, so things are sometimes better there, and I can get all my tasks done. I used to love horse riding and swimming, but I had to stop both of these because it was hard to find somewhere that could cater for me. I don’t walk my dogs for as long on a cold day, but I still take them out and enjoy doing as much as I can, and I take everything with me to keep warm.