Topic of the Month: October - Raynaud's Phenomenon

[Paul_Howard]

Raynaud’s phenomenon is a condition in which the small blood vessels in the extremities (fingers, toes, nose, ears) are over-sensitive to changes in temperature. During an attack, the blood supply to the extremities is interrupted. This causes the skin to become first white and dead looking, then it may turn blue and finally red when the blood flow is restored. There may be considerable pain, numbness or tingling. An attack is often triggered by exposure to cold, such as touching a cold object. Emotions such as anxiety and smoking may also play a part.

About 20-30% of lupus patients develop Raynaud’s phenomenon as a secondary condition. Chilblains (small, red, itchy swellings) are also common, often in association with Raynaud’s. They can become painful and are an abnormal reaction to cold, usually on toes and fingers. They can dry out leaving cracks in the skin, which expose it to infection. It is therefore very important that if you have lupus and Raynaud’s that you take care to prevent an attack.

There are many things that you can do to help cope with Raynaud’s phenomenon. It is important to remember that you may experience an attack at any time of year. The attacks are triggered by a change in temperature rather than simply the cold.

Some of the main areas to consider are;

• Exercise

• Diet

• Clothing

• Don’t smoke

You can read more about how these can help on the Raynaud’s & Scleroderma Association’s website - raynauds.org.uk/raynauds/co...

You sent us some great tips for how you cope with Raynaud’s and prevent an attack. Here they are:

- “I put a hot water bottle in a drawstring bag and wear it across my chest but under my coat. If my hands get too cold, I just pull my arms inside the coats sleeves and keep them on the water bottle.”

- “I buy hand-warmers in camping shops. The large ones give off heat for up to 20mins. You wrap them in a j-cloth & simmer them in water and they’re ready to be used again and again, hundreds of times – good value. I keep a pair in every coat pocket along with a pair of gloves.”

- “You can buy cheap hand-heaters from Primark for £1.50 each. They’re shaped like mini hot water bottles and last a few hours once you activate them.

- “I have a little heat pack in my jacket pocket that I activate when my fingers get too cold.”

- “It’s heat-up pads that I wear in my gloves and socks, but they’re only hot for about an hour.”

- “I have the Hotrox hand warmer. Yes, it’s £30, bit it’s rechargeable and lasts for up to 6 hours on one charge. I keep mine with me all the time.”

- “My son bought me gloves and a gilet which are heated with batteries.”

- “…electric throws on every sofa, an electric blanket on the bed and electric seat warmer on the car seat.”

- “The best thing I have ever done was buy myself a water bed. It is heated and kept at a constant temperature so I’m lovely and warm all over at night and also it has really improved my sleep pattern as I now don’t wake up several times a night not being able to move because my joints hurt so much.”

- “I buy boots that are a size too big and wear a thin pair of socks under a really thick thermal pair.”

- “Leather gloves, skiing socks and, if really cold, wear tights under your trousers!”

- “I wear leather gloves and my hands don’t get cold any more and I walk about the house in thick fluffy socks.”

- “North Face came out with gloves this year called ‘under wear’. They are super thin but are very warm. They allow you to wear your choice of gloves OVER them. I am sure there are knock-offs but the brand name will work the best because they have the top of the line ‘ski’ material.”

- “For my feet I have traditional socks from Madeira – can’t beat them!”

- “I find sheepskin gloves best, as even the knitted type gloves let the cold in. The only trouble is getting the car keys out of my pocket – I have to take the pesky glove off to get them out!”

- “In bed I wear down filled socks.”

- “Oven gloves for the freezer as well as the oven.”

- “I use silver gloves under Thinsulate gloves when out and just silver gloves inside.”

- “I don’t know about others but for me prevention is about keeping the whole body warm, not just hands and feet”

- “I too believe in trying to keep the whole body warm, which helps keep the extremities warm.”

- “My two bits of best advice are to try not to let yourself get cold in the first place and if you do, DON’T hug a radiator or anything hot, just warm things.”

You also shared your experience of using some treatments for Raynaud’s:

- “I have just started taking nifedepine. It seems to be working well so far.”

- “I also take nifedepine – the rheumatologist at hospital prescribed them. My fingers and toes used to go white, stiff and painful. I take them twice a day and they’ve helped me no end.”

- “…nifedepine is also a great drug when all else fails!”

- “My GP wanted to put me on nifedepine but my blood pressure is too low – one of the side effects is to lower BP. He had read an article in some obscure journal that Fluoxetine (Prozac) works really well on Raynaud’s and we thought it was worth a try because mine was so bad last winter. Well, good news is that I very rarely get an attack now. I do occasionally if I forget and my hands get really cold, but other than that it works really well.”

- “I have been taking amilodipine for over a year now and it’s great. Yes, I still need to wear gloves outside and be careful not to do stupid things like touching cold metal, but I don’t go white while I'm inside now. Big improvement and no side-effects at all so far (touch wood).”

- “I read in a magazine over the summer that Viagra is meant to help. I don’t know how true it is, I've not tried it, I don’t want to ask the doc! Embarrassing.”

***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***

Thank you so much for everybody that submitted their tips and experiences for this month’s topic. We’re sorry if we weren't able to use your comment in the article.

If you try any advice from this article and find it helpful, we’d love to hear about it. Please also let us know if you have any other tips to share.