Physiotherapy exercises for systemic sclerosis: NHS physiotherapy guide

Skin changes are the most common symptom of all forms of scleroderma, with the severity varying from person to person. Tightening of the skin is one of the manifestations that are thought to have the most profound impact on the quality of life for someone living with scleroderma. Although there are several medicines that can help to limit the progression of skin tightening, physiotherapy exercises are another key management approach that can be taken to maintain skin movements around joints and overall suppleness.

Physiotherapy is an area of healthcare that relies on a variety of techniques to help restore movement and function when someone is affected by injury, illness or disability. Delivered by specially trained and regulated physiotherapists, a'whole person' approach is utilised, whereby the patient is central in their own care through education, empowerment and participation in their treatment.

Physiotherapy can be helpful for people of all ages with a wide range of conditions, due to an often specifically tailored programme.

Physiotherapy is thought be especially beneficial for people who have problems affecting the:

• bones, joints and soft tissue – such as back pain, neck pain and sports injuries
• brain or nervous system – such as movement problems
• heart and circulation – such as rehabilitation after a heart attack
• lungs and breathing – such as chronic obstructive pulmonary disease

This service can be provided by physiotherapists as part of a multidisciplinary team in hospitals, GP surgeries and clinics, some sports teams and clubs, and even certain workplaces.

Physiotherapists use a variety of approaches depending on the need of their patient, but they mainly revolve around:

• education and advice, by giving general suggestions about concerns that may be affecting daily lives, such as posture and correct lifting techniques to prevent injuries
• movement, tailored exercise and physical activity advice, where exercises are endorsed that will help specific problem areas of the body
• manual therapy, where the physiotherapist will use their hands to help alleviate any pain and stiffness, and to improve flexibility

What are your options for exercise?

The smallest amount of exercise can improve your quality of life when living with scleroderma and Raynaud's phenomenon. Try to make exercise a regular part of your day.

We now have a range of exercise videos available online, that are recommended by physiotherapists and are suitable for people living with scleroderma and Raynaud's phenomenon to do at home.

Will Gregory, consultant physiotherapist, recently talked to our community about ' Keeping active with scleroderma and Raynaud's phenomenon: exercising during lockdown and beyond.' Please follow the link to watch the video, in which Will explains a range of exercises that you can do at home and outside to help manage your condition.

There are a range of at-home exercises that a person with scleroderma can do to act in the same effect. As a whole, it is useful for there to be flexibility, strength and conditioning, and aerobic components in someone's fitness programme. If you are stretched for time, it is important to remember that these exercises do not have to be a separate aspect of the day as activities such as climbing the stairs, walking, cooking and other household tasks still count.

Before undertaking any changes to your physical activity regime, it is important that you discuss this with your medical team, especially if you are in any doubt about what level of activity is appropriate for you; it is critical to avoid over-exerting yourself.

Below are some exercises that can be done at home; for exercises that are specialised to yourself and your body's capabilities, please ask your doctor or specialist nurse to refer you to a physiotherapist. Stretches should be held for at least 10 seconds and performed three times daily for benefits to be seen.

Flexibility:

One of the main characteristics of scleroderma is skin tightening and consequent decreased movement/stiffness at joints and muscles. Stretching will not prevent skin tightening, but they will help loosen any tightened tissues under the skin and many patients also say that their stretches do aid in pain relief.

• Hips, knees and ankles:
  1. Inner thigh stretch – stand with legs apart, feet facing forwards. Lean across to one side by bending that knee, keeping the other knee stretch, until you feel a firm but comfortable stretch in your inner thigh. Repeat with other leg.
  2. Calf stretch – stand facing a wall; put one leg out behind you, keeping your knee straight and heel flat on the floor. Lean forwards until you can feel a firm but comfortable stretch in your calf. Repeat with other leg.
  3. Standing hamstring stretch – stand with one leg in front of you and keep this leg straight. Bend the back knee and place your hands above the straight knee for support. Keep your back straight and bend forwards until a firm but comfortable stretch is felt at the back of the thigh and knee. Repeat with other leg.
• Shoulders, elbows and wrists:
  1. Shoulder abduction stretch – standing up, hold a stick(e.g. umbrella, rolling pin, walking stick) in both hands with the palms facing upwards. Push one arm up to your side until you feel the stretch. This stretch can also be performed whilst sitting. Repeat for other arm.
  2. Elbow stretches – bend and straighten your elbows; to get an extra stretch, use your other hand to push further to the extreme of the stretch.
  3. Wrist flexion stretch – Place backs of hands together and then lower them down the chest, keeping the base of the backs of the hands as close together as possible until you feel a firm but comfortable stretch.
• Neck and back:
  1. Mid-back twists - whilst siting on a chair, twist to one side to feel a stretch in the mid-back.
  2. Neck extension – whilst sitting, gently stretch your neck by looking upwards (stop immediately if any dizziness). You should feel a firm but comfortable stretch at the front of the neck, particularly if you have tight skin in this area.
  3. Low back rolling – whilst lying on your back on the bed with your knees bent up, gently roll your knees from side to side.
  4. Neck side flexions – tilt the head so that the ear gets nearer to shoulder and be sure not to look backwards during the stretch. You should feel a firm but comfortable stretch at the opposite side of the neck, running down towards the shoulder.

Muscle strengthening:

Scleroderma can affect your posture and range of movement, which in turn will affect muscle strength. Compounded by problems in diet meaning that you are not getting enough nutrition to keep muscles strong, you may find yourself being less active than previously.

Muscle strength can be maintained by keeping as active as possible, within the limitations of your scleroderma. Some specific exercises may have to be performed so that muscle groups are kept strong or to re-strengthen certain areas. Your physiotherapist will be able to assess you and determine if any muscle groups need focussing on.

General conditioning/aerobic exercise:

It is important to try and do some gentle cardiovascular or aerobic exercise regularly. General advice states that you should aim to do 20 – 30 minutes, 4-5 times a week, but how much you can manage and what level is appropriate will vary upon the nature of your scleroderma. Examples include swimming, aqua aerobics, cycling, and keep-fit classes.

For a list of local community exercise options, please ask for your healthcare professional or you can take a look at the Change4Life website.

Balance exercises

We are delighted to have teamed up with the fantastic Paula Manning who will be taking you through some very relevant balance exercises. Hopefully these exercises will help you test and monitor your balance, keep fit, make improvements and reduce any likelihood of accidental falls.

Whatever your age, Paula is challenging you to give it a go. Our dear Paula was diagnosed with mixed connective tissue disease and secondary Raynaud's 18 months ago. We would like to say a huge thank you to her and we hope you enjoy and find this valuable.

Click to watch now: https://bit.ly/3cZthFm

Try these easy-to-follow exercises and see a difference within a week:

1. adjusted calf raises
2. adjusted shin raises
3. sit to stand
4. tight-rope stand
5. tight-rope walk
6. one-foot stand

Further resources

For a list of exercise options, please talk to your healthcare professional. In the meantime, you can take a look at the following resources: Change4Life website, Active 10 – Home, Routes Map my walk, Welcome to Tai Chi Exercises by Ros Smith (Chartered Physiotherapist and Tai Chi Instructor), Facebook: Make Movement your Mission Public Group, YouTube: Make Movement your Mission Introduction Video 20 March 2020 and Big Bold and Balance

If you are interested in helping SRUK to fund more work into areas such as these, then please visit our donations page here: Donate Today. We rely on the generosity of our community to continue to support groundbreaking research in both scleroderma and Raynaud's.

If you would like information on exercising, then please visit: Managing Raynaud's/

Information on another new piece of research can be found here: I Botox an option for Raynaud's/