What is self-management and how can it help?
Self-management is what an individual can do to manage their condition and to help maintain their wellbeing. How this is approached will differ from person to person, but fundamentally it revolves around making decisions to support a healthy lifestyle, whilst recognising the physical and emotional effects the disease can have. Both Raynaud's phenomenon and scleroderma can affect individuals to varying extents, so each person will need to understand what works best for them in helping them maintain a good quality of life.
It's important to learn as much as possible about your condition and to determine whether changing certain lifestyle factors may help, such as diet or stress levels. Paying attention to your emotions and communicating with a support network, be it family, friends or SRUK, will also be of benefit. Evidence has shown that people who have the knowledge and confidence in self-management skills tend to have better health outcomes.
Most people living with scleroderma will also have Raynaud's, where small blood vessels in extremities are over-sensitive to changes in temperature. For this reason, it is important to stay warm to avoid Raynaud's attacks. Here are some basic tips:
Avoid sudden changes in temperature where possible
Try and keep your body warm, especially your hands and feet
Dress in thin, loose layers for maximum warmth. This means that layers can be taken off if too warm, and can be piled back on when cold
Wear gloves and long socks when cold, and try hand-warmers and thermal insoles. Our shop stocks several, very popular choices: www.srukshop.co.uk.
In addition to the weather, exposures to other cold environments can also trigger symptoms, such as cold aisles in supermarkets or air-conditioning in shops. Preparing for these situations may lessen the likelihood of a Raynaud's attack.
Wax bath therapy is intended to moisturise, soften the skin, improve blood circulation and reduce pain of joints. This approach uses paraffin wax that is soft and melts at a lower temperature than normal, therefore it does not cause any burns or blisters. Paraffin wax is also known to help muscle relaxation and muscle movement. Those being treated with a paraffin wax bath are encouraged to build up several layers of wax and then gently peel it off, rounding into a ball of wax to use later. This action also can contribute to gentle manipulation of the soft tissue, encouraging wider blood flow.
Stress can also bring on Raynaud's symptoms, therefore by managing stress levels, such as by pacing yourself and being aware of when you may be taking on too much, can help you reduce Raynaud's symptoms. This can be achieved by gentle exercise, which can also help boost circulation by getting the blood flowing to the extremities. Exercise is also beneficial for keeping the heart, lungs and muscles healthy, and for keeping the skin supple. It is important to find something that is suitable to your own abilities; walking, yoga and swimming are popular, low-impact exercises.
Stopping smoking is one of the most helpful ways of limiting symptoms, as this will help lower blood pressure and maintain good circulation throughout the body. There is lots of support available at pharmacies and at GP surgeries to help you stop smoking; visit
https://www.nhs.uk/smokefree for more advice and to download a Personal Quit Plan.
Whether or not an individual suffers from gastro-intestinal symptoms, it is crucial for people living with either Raynaud's or scleroderma to be aware of how nutrition plays a role in their symptoms. This is especially as the gut is affected in up to 90% of people with systemic sclerosis. You may need to try a combination of methods, either together or separately, to find a regime that works for you. Some people have trouble swallowing, digesting or maintaining weight, and it may be necessary to ask your doctor for referral to a dietician if you are struggling. Eating a balanced diet will help you manage your condition and stay healthy; some elements to ensure you include in your diet are:
Calcium: essential for healthy bones. Sources include dairy products, fishes, green vegetables, seeds, nuts and fortified cereals.
Vitamin D: needed to help absorb and utilise calcium. Obtained from sunlight, eggs, butter, margarine and cereals.
Iron: important in making red blood cells, which carry oxygen around the body. Found in red meat, poultry, fish, eggs and leafy vegetables.
Omega-3: helps to protect against many diseases, including heart disease, can reduce inflammation and is suggested as having a positive effect on mood. Sources include oily fish (sardines, salmon, tuna), rapeseed oil, walnuts and fortified eggs.
It is important to aim for 5 portions of fruit and vegetables per day. Apart from helping to maintain a healthy weight, they can also help to reduce pain and inflammation, provide fibre and help to regulate blood pressure and blood fats. Protein-rich foods such as fish, beans, eggs and meat will help the body to grow and repair, hence aiding you in recovery from surgery or ulcers.
Routine skin care is incredibly significant when living with Raynaud's and scleroderma. Keeping skin clean, dry and well moisturised are three simple things to remember. We especially recommend using moisturisers containing lanolin. Harsh, deodorised soaps should be avoided, and instead non-soap cleaners should be used.
For people with secondary Raynaud's, there is a risk of developing digital ulcers on fingers and toes. Ulcers should be dressed regularly and the frequency with which the dressings are changed will vary from person to person. Dressings will help to alleviate and prevent dirt and germs from entering the wound. Dressings must be as sterile as possible to reduce the chance of infection. We recommend that you see a nurse or GP initially to show you how to dress an ulcer so that you then know the best way to do it at home. They will also be able to tell you the best dressing for you, as there are several options. These include:
Inadine: this is impregnated with iodine. This is licenced for use on infected ulcer wounds. If allergic to iodine these should not be used.
Mepitel: made of a flexible polyamide net coated with soft silicon. It is easy to put on and shape to the ulcer.
Allevyn: consists of a layer of foam about 4mm thick providing a cushion for maximum protection.
Dressings and medication can be expensive, so a prescription pre-payment certificate (PPCs) may help to reduce costs, if you do not already receive free prescriptions. If you think an ulcer looks or feels infected, see a medical professional.
If you are concerned about the appearance of telangiectasia (clumps of tiny, broken blood vessels), you can learn to cover the area with specialist make-up, called skin camouflage. Our helpline (0800 311 2756) can direct you towards these services.
The psychological impact of Raynaud's and scleroderma is equally important as the physical impact. Whether it is the stress of day-to-day activities or the impact of the conditions on work and relationships, it is vital to recognise this side of living with these conditions.
Mindfulness can be described as paying more attention to the present moment, to your own thoughts and feelings, and to the world around you. This can help all of us enjoy the world around us more and help manage levels of anxiety and stress, thus acting to improve mental wellbeing.
Here is a suggested mindfulness technique:
Find a quiet, relaxed space.
Close your eyes and focus on your breathing; inhale slowly for 3 seconds and exhale slowly for 3 seconds.
Do not worry if your mind wanders, just acknowledge that this has happened and then bring your thoughts back to your breathing.
Repeat this for as long as you like.
It may help you to pick a regular point in your day to do this. Yoga and tai-chi are also said to be effective in helping you become more mindful. Head to the Mental Health Foundation's website (www.bemindful.co.uk) for more information, an online mindfulness course, and details of mindfulness teachers in your area.
It is common to suffer from fatigue when living with an autoimmune condition, with people often describing how they'hit a wall' of fatigue that makes it challenging to continue without rest. After a proper rest, the fatigue may improve, so this is a potential way of reducing its impact. Tips on avoiding fatigue are:
Use technology where possible, e.g. a dishwasher or ergonomic device.
Use a shopping trolley when out shopping.
Place items you use frequently in easy to reach places.
Buy pre-chopped vegetables.
Simplify your day-to-day activities and ask for help when you need it.
If you think your drug treatment may be causing your fatigue, talk to your doctor about reviewing your treatment. They can also look for signs of other conditions that may be causing fatigue, as well as checking inflammation or anaemia levels.
If Raynaud's or scleroderma are limiting your ability to work and lead a fulfilling life, please get in touch with us and we will do our best to help you. If your concerns are surrounding financial concerns, visit our UK benefits page on our website to find out more on government schemes.
We can also help put you in touch with local groups and other individuals who have the condition. You can also chat with other people who also have Raynaud's and scleroderma through our online community.
If you feel you are struggling with your mental health, we implore you not to suffer in silence and to speak to your GP about a referral to psychological support services. Services such as Samaritans also take calls 24/7 on 116 123. If you are a carer or know someone who is a carer, please head to www.selfmanagementuk.org.