More than just cold hands

February is Raynaud’s awareness month. Physiotherapist and Parkinson’s dance teacher Liz Hooks has the condition and for her, a little kindness and the offer of some hot water would go a long way to help manage it.

Raynaud’s is a largely invisible condition, unless someone is in the midst of an attack. Even then, only those who know the signs may realise that you are in pain. Liz Hooks

Raynaud’s disease is a hereditary condition which causes vasoconstriction of the blood vessels, so the blood supply doesn’t get through to extremities like the hands, feet or nose. This causes them to get extremely cold and numb, and then it can be quite painful when the blood comes back. The skin can get very dry, and then crack and bleed. Imagine having someone stick needles into the ends of your fingertips – that’s what it can feel like. 

An attack doesn’t just come from the cold. The stress of a busy day at work, the vibrations of sitting on a bus or just generally feeling under the weather or emotionally worn out can cause or exacerbate attacks.

Attacks are very frustrating because as well as being painful, you lose dexterity. I find it frustrating when I am in a rush to cook dinner, but if I have an attack I can’t just get on and do it. I have to stop, boil the kettle, have a cup of tea for example – and I’m thinking, I’ve not got time for this! My family now knows what to do when I have an attack and help me find my slippers and heat up my heat pack and boil the kettle.

There are times when you struggle to walk, I have taken the family out for a walk, had an attack and got numb feet. My husband might have to help me take off my wellies and buckle my seatbelt to drive me home.  Depending on the severity, it can take anything from 5-10 mins to an hour for an attack to be completely resolved.

It’s sometimes a bit more difficult to be out and about, for example in a restaurant with air conditioning. I have to make sure I’m sitting away from the door and away from the air conditioning or I have to ask them to switch it off altogether. It’s also awkward when you go to pay in the supermarket, but the cold aisles have caused an attack, and you can’t get your card out of the wallet.

When I tell people I have Raynaud’s a lot of people say – ‘oh yes, I get cold hands too’ or ‘cold hands warm heart’ or something. It’s a little bit more than that and you have to find ways of dealing with it.

Exercise really helps. If I work from home and am sat still working on my laptop for a while, I get really cold. So I get up and run up and down the stairs a few times. I also dance. I teach a Parkinson's dance class and currently enjoy participating in African dance and also musical theatre dance classes.

As a Clinical Specialist Physiotherapist working with people who have acquired brain injuries, I know you can’t always see what’s wrong with people.

Raynaud’s is a largely invisible condition, unless someone is in the midst of an attack.  Even then, only those who know the signs may realise that you are in pain.

A little act of kindness can go a long way – perhaps give someone a seat away from a draughty window or air con, offer to get them a hot drink, help them manage their stress or give them a helping hand in the supermarket.

If I know I’m going to be out for the day with the kids I pack a picnic. But often this means that you are obliged to eat outdoors,  attacks often can be exacerbated by being hungry, or after having eaten– it would also help if cafés would be a bit more understanding about the need to eat indoors where it is warmer.

I’d love to see a simple card or something similar for Raynaud’s sufferers that explains that we need to be allowed to come in and warm up. I don’t expect cafes to start giving out free hot drinks, but hot water in order to warm our hands around a mug would be appreciated.

For more information about Raynaud’s please visit Sclerodema and Raynaud’s UK.

If you, or someone you know, are displaying any of the symptoms described above, take SRUK’s online test at: www.sruk.co.uk/takethetest or consult your doctor.

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  • Rare diseases