Monday 18th January 2021
Scleroderma and progressive fibrosing interstitial lung disease
Would you like to have your say on whether a treatment is made available for progressive fibrosing interstitial lung disease (PF-ILD)?
With winter now upon us – a bad season for Raynaud’s patients – we asked members of our community for tips to avoid triggers and manage their symptoms.
Primary Raynaud's, meaning the condition occurs by itself, is the most common form. This type is thought to cause disruptions in how the nervous system controls blood vessels but exactly what causes these disruptions is unclear. There is some evidence that primary Raynaud's may be an inherited condition, as cases have been known to run in families.
me, anything is a trigger! Sometimes there is no reason whatsoever and I just have to manage the episode."
temperature threshold is much lower than the average person. My husband can be boiling and I'll be freezing. I have to wear lots of layers and I have to be very mindful of exposing myself to the elements.
Tackling Raynaud's can be a daily struggle but there are plenty of nifty techniques to help minimise your suffering. We will not be discussing medicinal options here, but there are many treatments you can find on our website if you experience severe symptoms.
The key to managing Raynaud's phenomenon is preventing an attack before it happens by planning ahead.
Avoiding cold environments, touching cold items or spending time in areas where temperatures fluctuate will reduce the number of episodes you experience.
Wear lots of thin layers and loose clothing in order to retain warmth. Invest in thermals, including shoe insoles, and fleece-lined gloves, socks and coats.
Karen said: “I use an app on my phone to control my heating at home, so that I can make sure my home is always warm before I arrive. I also have a heated steering wheel to prevent attacks in my car.
While many patients recommend gloves, Sarah strongly advises against them, saying: “Wear mittens instead of gloves. If your hands are cold and you put gloves on you isolate the fingers and they're not going to get warm. If you wear mittens, you've got more chance of warming up because your fingers are together."
For many patients with Raynaud's, digital ulcers can be the most debilitating symptom. Here are some ways to keep ulcers at bay:
gym really helps me. I go regularly and it warms me up in winter and elevates my mood too."
As Sarah Cox said:“With your health you have to prioritise what you need, not what you want. Just be sensible and put your health first."
If you are interested in helping SRUK to fund work that will help to improve the quality of life of our community, then please donate today. We rely on the generosity of the community to continue to support groundbreaking research in both scleroderma and Raynaud's.
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If you'd like to learn more about Raynaud's, then head to our recent article: Latest research into Raynaud's syndrome.
Monday 18th January 2021
Would you like to have your say on whether a treatment is made available for progressive fibrosing interstitial lung disease (PF-ILD)?
Wednesday 18th November 2020
A little change really can make a big difference. How we spend our days actually has a massive impact upon our health and wellbeing, and by making a few simple adjustments to your daily routine, you can improve your quality of life. So what would you like to change? We have everything you need.
Wednesday 21st October 2020
In the fight against coronavirus, an effective vaccination could be the game-changer that the world is waiting for. It typically takes several years to develop a new vaccine, so how close are we to finding a real vaccination for coronavirus, and how might this work to protect us?