The reason I have written this article is to encourage fellow Raynaud`s and scleroderma sufferers to keep active in the outdoors, as well as spreading awareness that the common “numb fingers” condition might be an indication of the more serious scleroderma. I am sure other sufferers could be helped by some of my experiences.
Before I was diagnosed with Raynaud`s and scleroderma over 30 years ago, I was a very active hill walker, mountaineer and skier. It was on a student expedition to Greenland, when there was a tragic fatal accident, that my symptoms were first triggered. Even though I have had to modify my activities (only slightly!) I have managed to maintain my interests and lifestyle. Indeed it is my passion and what I live for - so giving it up could never be an option.
The only way this has been possible is thanks to a few gadgets, but more specifically to wearing clothing designed to keep you warm over and above fashion. The sort of garments I am talking about are those, which skiers and alpinists normally wear, so can be quite expensive. However, people with cold-related illnesses, keeping warm is not a luxury, it is essential for health and comfort. With the right gear I find it possible to get out into the mountains in the depths of winter, knowing that I will be warm and safe. I think that if people have never tried any of these things they would never dream that preventing cold-triggers would actually be possible.
I would recommend wearing a good down jacket. In my opinion, you get what you pay for i.e. cheap ones will contain more feathers than down and so trap less air. The best ones are so light and soft that they will scrunch up into a little ball. Top grade ones have a “fill-power” rating of about 800, which is an indication of warmth. My favourite make is Rab who also make down jackets with waterproof outer shells. The joy of a good down jacket to a Raynaud`s sufferer is that when you walk out of a warm house into the cold you won’t notice any difference. You are so well insulated; it is like being in bed - wrapped in a duvet. Once you have a jacket like this it is hard to ever go out without it – indeed the weather has to be very warm before I stop wearing mine! Keeping the body core warm really is the best way to keeping the blood flowing to the extremities. Other key areas are the wrists, neck and head. Good down jackets should come with a cosy hood and collar too.
An alternative type of jacket, which is not as warm but still light, is cheaper and does not mind dampness, is one made of Primaloft. This would be my summer choice! Crucially I also have big padded mitts made of both down and primaloft which prevent Raynaud`s attacks - especially when warmed on the radiator first!
My condition now means that I am unable to cope with air-conditioned buildings. When I go to the cinema, when the lights are out, I pull out my down jacket from it’s little “stuff-sack” and I can prevent the annoying chill from affecting me. A down body-warmer is also good for heating the core. At home I always spread one over me when relaxing with my feet up.
Apart from down, the next best items are made from merino wool - close-fitting base-layers, i.e. ultra cosy long sleeved tops, long johns and socks. Again they are not cheap but what a difference they make. The materials used are natural and sustainable and their softness hugs the body, eliminating heat loss from air gaps.
Fleece is not just for the outer layer. I wear a fleece nearly all the time (of varying thicknesses). It keeps me comfortable and keeps the heating bills down at home. The warmest fleeces are called Pro-thermal and have long fluffy fibres that trap loads of air.
As for gadgets, I have a fleece body-warmer with a battery-heated lower back but I do not need this very often. I prefer to keep my core warm by wearing down. I have battery-heated mitts (Rohan) but prefer to use the familiar Mycoal heat-packs inside my big insulated mitts (e.g. Extremities Super Inferno goretex/primaloft). In case anyone has not cottoned on to the use of these “warm-packs”, placing them in a sandwich bag or tin foil to trap the air can prolong the life span of these hand warmers. This makes them very economical and can last a long time.
One of my favourite gadgets of all is my Thermic Lionpack heated insoles. They are very expensive but absolutely fantastic. They are designed for skiers (which is why I first got them) but during the last 2 cold winters I have used them in all my footwear. Even if you do not suffer Raynaud`s attacks in your feet, the joy of the warmth spreading up from your toes helps to relax the whole body. You buy the insoles separately (from Thermic) or, like me, you can just buy the heating elements to stick onto your own special orthotics. A wire comes out from this to a small lithium battery pack, which can be clipped onto boots. I found that a simple velcro strap round the top of my calves keeps it in place too. You then have a tiny wireless control pack round your neck or in your pocket to choose your heat setting.
You could buy any of this clothing etc. from the internet but my best advice is to treat yourself to a weekend in the Lake District. In January and February the hills are quieter, hotels are cheaper and the sales of winter gear are great. The towns of Ambleside and Keswick have the best range of outdoor gear anywhere in Europe. There is a huge range of flattering styles and colours of technical garments and the assistants know their stuff too. You can then try out your new gear on a lovely walk. It is the one place where I blend into the crowds – I often get comments that I have lost my way to the arctic when just shopping in Aberdeen! However, looking over-dressed is a small price to pay for knowing that I am doing the best to help my body.
With all this kit to help me I manage to go skiing and hill walking regularly - but I cannot overcome all my problems. Unfortunately I have had to stop my wonderful annual “hut to hut” backpacking trips with friends to the Alps or Norway. I cope with cold by carrying a light down sleeping bag (even though no one else needs one), but other things have taken their toll i.e. calcinosis, sleep problems and acid reflux. All my pills cannot cope when you have no control over what and when you eat, and one pillow is not enough when I need to raise my body at night. Now I have even taken to doing long-distance walks in the south of England, getting my bags carried for me to a nice bed and breakfast.
In summary, an investment in any of the products I have described can free up a sufferer from the fear, isolation and pain of cold - or at least help in that direction. Indeed if the NHS believes that prevention is better than cure we should all be prescribed a down jacket at least! I know that without this stuff I would not be able to keep up such an active life in the outdoors. My life would be ruled by attempts to keep warm.
Even if you are not interested in skiing or hill walking I hope that some sufferers might take something from my suggestions, or be inspired to try another approach to coping with cold. It is a beautiful world out there and even with scleroderma, I intend to enjoy it for as long as possible!
Beverley Black (member of the RSA)