Scleroderma

Exercise is important for everyone. There are many forms of exercise including aerobics, cycling, walking the dog, and even stair climbing and home chores. These are all good but if you have Scleroderma it may be necessary for you to also have a therapeutic exercise program designed by an occupational therapist (OT) and/or a physical therapist (PT) to assist your mobility.

Movement can be limited for patients with Scleroderma as joints can be affected. This can mean that exercise tolerance can be reduced and this is something which needs to be taken into account when deciding an exercise programme.

Have A Purpose
Exercise should always have a purpose. In Scleroderma it is essential that you are given exercises that you are going to want to continue with and ensure that exercise becomes part of your daily routine and is integrated into your activities. There is little point in forcing yourself to watch a video and do an aerobics routine in your front room if you don’t like aerobics or if you don’t want to do something on your own. If you do something you enjoy then hopefully you will stick with it and be a lot happier doing it. Keeping an exercise diary reminds you of where you have come from and helps you to see where you are going.

Set Yourself Realistic Goals
It is hoped that if a patient takes part in an exercise programme then joint motion will be increased and maintained as will muscle strength and circulation, all of which are affected in Scleroderma. Joint limitations occur because the disease involves connective tissues, particularly the skin which thickens and loses its elasticity. When this happens it binds down the tendons and muscles which move the joints. When exercising it is important to set yourselves realistic goals and build up gradually. To begin with it may just be that you go for a ten minute walk once a week and then build on this. Monitoring pain is essential as a guide to the amount and type of exercise that you do. Learn to recognise your pain and discomfort levels and how far you can extend them.

Safety
Before you partake in any form of exercise make sure that the challenge is safe and will not have a negative impact on your Raynaud’s and/or Scleroderma. Don’t go outside on a cold day unless you are wrapped up warm and make sure that you are prepared for the activity which you are going to do. If unsure, check with your GP or health professional.

Clothing
Dressing for success in your exercise programme means wearing non restrictive clothes that are layered to keep you warm but of appropriate materials to keep any sweat away from you.

Exercises
The course of Scleroderma is variable, but there tend to be common areas of involvement. It is therefore important to regularly exercise the hands, wrists, elbows, shoulders, neck and face. If you are very stiff and painful, or have developed joint contractures, you may need the therapist to show you different techniques, or actually help you with the exercises.

The following list of exercises are examples of what may be included in your program:

1. Bend fingers at knuckles to make a shelf or a right angle. Then, bend other joints until fingers touch the palm. Straighten out then repeat.
2. Standing, place palms facing down on table. Press down to stretch the wrist and the fingers.
3. Place hands behind your head. Stretch elbows apart and take deep breath in. Exhale and repeat.
4. Tilt head back and look toward the ceiling. Then bring chin toward chest. Relax, repeat.
5. Facing a mirror, make as wide a grin as possible. Relax, repeat.
6. Facing a mirror, open the mouth so the teeth are as wide ap possible. Relax, repeat.
   

Exercises are only one part of the treatment program. If you visit a therapist he/she will also address: pain, edema control, circulation, the need for splinting, and the use of assistive devices to maintain functional independence.

Massage
Some patients find massage soothing. Massage of the skin will help to mobilise stiff connective tissues as well as having a beneficial effect on the circulation and nutrition of the skin. It is well worth asking your GP to recommend someone who is qualified to you. A lot of physiotherapy departments now offer therapeutic massage and will be aware of the problems associated with Raynaud’s and Scleroderma. Some sport centres offer massage and the quality is often very good.

Wax Baths
When you have Scleroderma it is important to look after your hands. By using a wax bath you can help to relieve tight painful skin and painful joints. It helps to keep your hands smooth and makes it easier to exercise them. If you have calcium deposits, waxing can also help deposits come to the surface of the skin. However, do not use wax if you have infected ulcers on your hands - wait until they have healed. You can wax your hands as frequently as you want, and the more you do it the more your hands will benefit. It is also possible to wax your feet.

Heat
The use of heat in preparing the muscles for exercise and is much favoured by patients with Scleroderma. Hot water bottles and electrically heated pads are useful. However, a hot bath or shower is also benefical.

Relax
Reducing tension and inducing relaxation will make exercise easier and more effective. Use relaxation techniques before you exercise and appropriate music and tapes to work with while you exercise.

Hydrotherapy
Hydrotherapy is to be recommended. For further information about receiving such treatment speak to your GP or physiotherapist. Some patients find the temperature of the water is insufficient to prevent an attack of Raynaud’s. If a pool with a suitable temperature is available, swimming and exercise in water may help to preserve the range of motion, as well as preventing decrease in lung volume.

Occupational Therapist
Referral to an occupational therapist may be appropriate for some patients. The occupational therapist can also help by advising the patient about pacing of activities to preserve energy and any adaptations and gadgets to preserve independence. Splinting may be discussed in order to make activities more manageable.

Conclusion
It is very difficult to get into a daily routine of exercise, and it is even more difficult to start one. If you are not already seeing a therapist, ask your physician to refer you to one who will help you plan a program suited to your particular needs. An exercise program has more benefits than just increased strength, improved mobility, and longer endurance. Exercise improves mood, helps restore normal sleep patterns, and results in a better sense of well-being and independence. Some people get discouraged because they can no longer perform at the level they were prior to their illness. Just because you cannot run marathons does not mean that you cannot walk daily, ride an exercise bike, or participate in a pool exercise program.

Reprinted by permission of the Raynaud’s Association, Inc.  www.raynauds.org.  Copyright © 2009 Raynaud's Association, Inc. All Rights Reserved.