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TOOLKIT

Living better with

Ankylosing Spondylitis

in collaboration with

This toolkit is for information purposes only and not intended to supplement, amend, vary, modify or substitute etc., any medical advice whatsoever. Information provided is “as is” without warranty of any kind, either express or implied, including without limitation warranties of merchantability, fitness for a particular purpose, and non-infringement. Novartis Healthcare Private Limited does not make any warranties or representations as to the accuracy or completeness of the information contained herein. Novartis Healthcare Private Limited may periodically change, improve and/or update the information without notice. Under no circumstances shall Novartis Healthcare Private Limited be liable for any loss, damage, liability or expense incurred or suffered which is claimed to have resulted from use of the toolkit, including without limitation, any fault, error, omission, interruption or delay with respect thereto.

Disclaimer

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Managing Anxiety & Stress

Getting Healthcare Support

Tips on Lifestyle

Get Moving with Exercise

Practising Good Posture

Track Your Symptoms

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CONTENT

Managing

Anxiety & Stress

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Managing Anxiety and Stress

How to know if you are feeling anxious or stressed1

Difficulty in falling asleep

Trouble concentrating Restlessness

Increased heart rate

Rapid or quickened breathing

Anxiety is the response created in your body to a stressful situation. Coping up with chronic pain, stiffness and fatigue can be stressful, especially when dealing with an invisible condition like ‘Ankylosing Spondylitis’ (AS).1

When AS is coupled with other challenges like social distancing or a changed work schedule, it may leave you feeling out of control and anxious because it affects what you like to do, where you like to be and who you want to be with. It is natural that you feel isolated, resentful and many doubts, questions and feelings cross your mind. Take a deep breath! You are not alone!

You may not experience all of these, but it is important to recognise anxiety and take active measures to deal with it.

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Things you can do to manage stress better :

Upgrade your health care habits1

Small changes in lifestyle can make you feel better both physically and mentally.• Get enough sleep• Eat a well-balanced diet• Get in a moderate amount of physical activity everyday• Avoid alcohol and quit smoking

Breathe

Did you know?

A study demonstrated that worry and stress may put further strain on the immune system. Another study showed that a 10 minute relaxation session that focussed on deep breathing resulted in a significant reduction in the destructive inflammatory chemicals in the body.2

So, make a conscious effort to practice deep breathing as often as possible. Incorporating a fixed time to do breathing exercises and meditation into your daily schedule will help.

Anxiety and stress are common manifestations of physical illness. Knowing your feelings, accepting them and sharing them with a friend, family or your

Rheumatologist will help you deal with your feelings better.

Work on your relationships

SUGGESTION: Keeping communication open with your loved ones can help avoid misunderstandings and stressful situations as you deal with a combination of AS and anxiety

Pay attention to your emotional needs

Acknowledge your struggle. Share your feelings and discuss your anxiety and fears with your loved ones. Do not hesitate to ask for help.

Join our community to meet, interact and discuss your condition with others like you.

For more information on learning to cope with AS better, log on to

www.youtube.com/fightthefuse

www.facebook.com/fightthefuse


References:1. Healthline. Everything You Need to Know About Anxiety. Available [Online] at: https://www.healthline.com/health/anxiety Accessed on 9th April 2020. 2. Melville NA. Medscape. Worry, Anxiety Tied to Increased Inflammation. Available [Online] at: https://www.medscape.com/viewarticle/928287_print Accessed on 16 April 2020.

Getting

Healthcare Support

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Points to keep in mind for contacting your healthcare team

Living with a chronic illness like Ankylosing Spondylitis can get overwhelming at times. You may have doubts or worries about your condition or medications. At such times, it is best to contact your Rheumatologist, who will be able to answer all your questions accurately. But getting in touch with your Rheumatologist may be difficult, especially when you are restricted to your home.

Most health care providers are available for teleconsulting or for an online consultation. Ask your Rheumatologist if you can avail virtual tools to get in touch, especially if you need reassurance on your condition or medication or if you have a routine appointment which you don’t want to miss.

Keep the contact details handyHaving a list with the contact numbers and email address of your health care team is essential. Ensure that your family and/or your caregiver has access to this list.

Request an appointment

Ask for an appointment (tele / online consult) with your doctor or health care professional. Setting aside a stipulated time will enable both you and your doctor to get away from other distractions and focus on your condition.

Getting Healthcare Support

Follow throughOnce you are done with your consultation, it is important to follow the advice given. Keep in mind that the advice your doctor gives you is the best for you and is given based on your medical history and current medication.

Write down your questionsIt is a good idea to list down your questions prior to your call or consulting session. This ensures that your questions are precise and nothing of importance is forgotten.

Jot down answers to your questionsWriting down answers has two benefits: (a) You don’t miss out on questions and (b) You are sure that the answer addresses your query, leaving no room for doubt.

Remember Anxiety regarding your condition is best handled by asking the right questions, to the right people, so that you get the right answers!

To know more about the discussion you can have with your Rheumatologist about your condition, log on to





Tips on

Lifestyle

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Ankylosing Spondylitis (AS) impacts every aspect of life, it influences your outlook. Everyone copes differently. A change in your regular routine – for example working from home, can get you unsettled. Learning to adapt to new situations and creating a ‘new normal’ will help you adjust better.

Adherence to therapy prescribed by your Rheumatologist is the first step towards living a healthier life.

Important things you can do to live well with AS

Accept yourself Move

Acceptance does not mean accepting your pain willingly, it means accepting yourself, as a whole, along with your diagnosis and without judgement. Accepting changes in working schedules or new routines is also part of accepting yourself.

Movement helps you remain flexible and helps reduce pain. Develop an exercise routine (after consulting your Rheumatologist). There are many exercises which can be done in the comfort of your home.

Breathe Think tall

Be sure to include breathing exercises into your daily schedule. Deep breathing helps keep your rib-cage flexible and relaxes your mind and body.

Concentrate on your posture. Develop a habit of being ‘posture aware’. Ensure you do not slouch. Right posture is important for work, exercise or leisure.

Eat healthy

Eat a well-balanced diet, rich in vitamins, minerals and dietary fibre. Create your own healthy eating plan and follow it especially if you are working from home and physical activity is minimal. It is important that you maintain a healthy weight, so that your joints are not put under undue strain.

Practice mindfulness

Incorporate mindfulness to connect you to the present. Mindful eating, posture adjustment and meditation are just a few ways of inserting the present into busy lives.

Tips on Lifestyle

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Stay in touch Ask for help

Online platforms and tools offer various ways of staying connected with friends and family even when face to face connections are not possible. Join social groups which have like-minded people or people whose experiences match yours.

Don’t be afraid to ask for help from friends, family, care-givers, co-workers or your health care team whenever required. Discuss your treatment goals with your Rheumatologist.

The battle with AS is not a battle of choice. It’s an ongoing process, surprising you with different challenges. Learning to accept them and moving ahead should be your motto.





For more information on learning to cope with AS better, log on to

References:1. NAAS. Top tips for managing your AS. Available [Online] at: https://nass.co.uk/about-as/new-to-as/top-tips/ Accessed on 8th April 2020.

Get Moving with

Exercise

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Get Moving with Exercise

Your Physiotherapist / Rheumatologist will be able to help you structure your exercise program, but you have to ensure that you will be able to follow through with it.

Try out new routines, sports and regimens after consultation with your Physiotherapist /Rheumatologist

Exercise helps you maintain or improve your flexibility, mobility, posture, makes it easier for you to breathe and manage your symptoms better.1

Did you know?

Exercise is one of the most important things you can do to live better with Ankylosing Spondylitis (AS).

Exercising need not be restricted to a gym. The benefits of exercising can be easily acquired even when it is done at home, provided you have a well-structured exercise plan that is approved by your rheumatologist or physiotherapist.

Many exercise routines are available that are effective, fun and can be done in the comfort of your home.2 It is important that you choose the right exercise to increase your flexibility and manage your symptoms.

Exercising at home

While choosing your exercise routine, ask yourself 2 questions

Choosing an enjoyable exercise schedule will go a long way to ensure continuity

Is it well-structured? Will I be able to continue doing this?

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Structuring Your Exercise ProgramYour exercises should be planned and structured in such a way that they improve different aspects of your fitness.3

Each exercise schedule should include the following components:3

Warm up

Short period of gentle exercise that prepares your body for more strenuous activity (e.g., marching on the spot)

Recommended: 5 minutes before every exercise session

Tips: • Always warm up before exercise• You should be able to hold a conversation

throughout your warm up routine• Be ‘posture aware’

Mobility

Slowly moving different sections of the spine to improve mobility

Recommended: Daily

Mobility exercises you can do at home Looking up and down, chin tucks, looking over shoulder, trunk rotation, side bends, arm opening, knee rolling. For details on mobility exercises visit https://www.fightthefuse.com/diagnosis-treatment/as-exercises/mobility-exercises/

Tips: • It is okay even if you can move one side

better than the other • Ensure that movement is smooth and pain free• Perform each exercise to the best of your

ability

Flexibility

Stretching the larger muscle groups that are anchored around the spine

Recommended: Daily

Tips: • Best done immediately after warm up• Hold the stretch for 30 seconds, you should

feel slight discomfort or resistance• Stop if you feel too much pain or discomfort

Flexibility exercises you can do at home Glutes stretch, hamstring stretch, front hip stretch, lats stretch, back extension. For details on flexibility exercises visit https://www.fightthefuse.com/diagnosis-treatment/as-exercises/flexibility-exercises/

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Breathing

Helps expand your rib cage and enables you to breathe better

Recommended: Daily

Tips: • Maintain good posture and be comfortable• Count the number of inhalations and

exhalations and try to increase them gradually• Stop if you feel light headed

Most of these exercises can easily be done at home as they do not require any specialised equipment.*

Your Physiotherapist / Rheumatologist will guide you to create an exercise schedule that best suits you! They will guide you regarding exercises that you should do and the ones you need to avoid.

*Disclaimer: This is a graphical representation of an Ankylosing Spondylitis patient. Always seek medical advice from your Rheumatologist/Physiotherapist before undertaking any physical activity.

Cardiovascular

Good for your overall health

Recommended: 30 minutes, 5 days a week

Tips: • You should be mildly breathless but you

should be able to hold a conversation• The 30 minute session can be broken into

smaller 10 minute segmentsCardiovascular exercises, you can do at home Step-ups, dance, spot jogging, etc

Strength

Muscle building exercises that help maintain posture, strength and muscle tone

Recommended: 2 to 3 times a week

Tips: • All movements should be done slowly• Allow at least 1 day rest between strength

sessions

Strengthening exercises, you can do at homeBridging, knee to chest, bicep curl, etcNote: Filled water bottles or books can be used instead of dumbbells

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Once you structure your exercise schedule, it’s time to begin. Here are some points you need to consider while exercising:

Exercising goes hand in hand with medicines. Make it part of your life even while you are at home.

Choose a time best suited for you, keeping in mind what time of day your symptoms are better.2

2Learn the right way of doing an exercise. Your doctor or physiotherapist will be able to guide you. You can join an online session with your physiotherapist who will be able to guide you through your exercises.

1

Do not overdo it. Avoid movements that cause anything more than mild discomfort.2

5 Involve your family / kids / pets in your exercise routine.

6

Focus on your posture while exercising. Using a mirror will help you conduct regular posture checks.

3 Try out different routines like yoga or pilates to ensure variety.

4

Don’t be hard on yourself.

You may have good days where you can exercise better, and days when you cannot. Go with the flow!

If you get any unexplained symptoms while exercising such as chest pain, palpitations, unexpected breathlessness, dizziness, faintness or lose consciousness, please stop and see a doctor straight away.3

For more details on benefits of exercises, log on to





References:1. MedicalNewsToday. Exercises and postures for ankylosing spondylitis. Available [Online] at: https://www.medicalnewstoday.com/articles/317854 Accessed on 7 April 2020. 2. Everyday Health. 7 Exercise Dos and Don’ts for Ankylosing Spondylitis. Available [Online] at: https://www.everydayhealth.com/hs/ankylosing-spondylitis-treatment-management/exercise-dos-and-donts/ Accessed on 7 April 2020. 3. NAAS. Back to action. Available [Online] at: https://nass.co.uk/wp-content/uploads/2018/08/Back-to-Action-low-resolution-version.pdf Accessed on 7 May 2019.

Practising

Good Posture

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Practising Good PostureMaintaining good body posture is an important aspect of Ankylosing Spondylitis (AS) management that is very often overlooked.

Proper alignment of your body has the following benefits:1

• It helps strengthen your muscles

• Prevents spine deformities

• Reduces pain and discomfort

Practising good posture requires conscious effort, but the benefits are worth it.

4 crucial times when posture plays a major role

Working

Sleeping Leisure

Exercising

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Know your ‘work from home’ posture offenders1

Continuously working on a laptop can increase chances of stooping which can impact your spine

Cradling the phone between your neck and shoulder may take a toll on your spine and neck

Comfortable places like sofas, couch, beanbags and beds can be devastating to your spine

Learn to overcome ‘work from home’ posture offenders1

• Choose the right desk and chair

• Keep your monitor at eye level. If you are using a laptop, adjust your desk and chair accordingly

• Keep your mouse close

• Make objects easy to reach

• Avoid phone strain, use headsets

• Take regular breaks

• Have a standing workstation which you can use at intervals

Posture while WorkingMaintaining the right posture while at work is important to minimise discomfort and keep your back and spine healthy.1

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Posture while ExercisingA daily exercise routine, if done keeping in mind the right posture can work wonders for your symptoms.

Know your ‘exercise’ posture offenders

• Being unaware about right posture while exercising

• Not observing oneself while exercising

Learn to overcome ‘exercise’ posture offenders2

Learn to maintain ‘neutral spine’ posture while exercising

• Stand with your feet shoulder width apart and grip the pelvis between the fingers at the front and the thumbs at the rear.

• Look at your posture in the mirror. Correct it accordingly

• Observation is the key to get your posture right

• Ask your Rheumatologist or Physiotherapist for help with your posture. Virtual exercise sessions may be useful to get your exercise posture right

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Posture while SleepingWhile you sleep, you may be unwittingly doing more harm than good, if you do not consider your sleep posture

Learn to overcome your ‘sleep’ posture offenders3,4

• Use a firm mattress that supports your spine and joints

• It is best if you sleep without a pillow. If you require it, use a thin pillow that supports your neck

• Find a comfortable position to sleep

• Follow a good bed time ritual to get good sleep

• Prone lying (if possible) for 20 minutes daily is recommended as one of the best stretches.

Know your ‘sleep’ posture offenders

• Unsupportive mattress (too soft, too firm, or sagging)

• High pillows, Bad sleep positions

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Posture during Leisure ActivitiesPosture plays an important role even during leisure activities i.e., the time when you are not working, sleeping or exercising. Leisure time activities include spending time with family and friends, watching television, cooking, doing the laundry or dishes, etc.

Learn to overcome your ‘leisure activity’ posture offenders5,6,7

• Sit in a comfortable, straight backed chair (shoulders, back, ribs in)

• Keep your chin in

• Ensure that your shoulders are relaxed and your feet are flat on the floor

• Avoid sitting for long periods. Get up and stretch for 5 minutes after every hour

• Work surfaces in the kitchen should be high enough so you don’t have to bend

• While washing dishes, stand close to the sink

• Keeping one foot at a time slightly raised while doing the dishes helps relieve strain on the spine

Know your ‘leisure activity’ posture offenders

Comfortable couches and lounge furniture

Incorrect postures while doing household chores

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• While lifting up objects, bend at the knees so that your back remains straight

• Lift slowly. Avoid quick and jerky movements

• If the object is heavy, seek help or use a cart

Maintaining the right posture while working, exercising, sleeping and during leisure time is essential, especially when you have AS.

The right posture reduces strain on your spine, thus reduces chances of fatigue and pain, making you more productive

and help live a fuller and better life

References:

1. NHS. How to sit at your desk correctly. Available [Online] at: https://www.nhs.uk/live-well/healthy-body/how-to-sit-correctly/ Accessed on 16 April 2020. 2. NAAS. Back to Action. Available [Online] at: https://nass.co.uk/wp-content/uploads/2018/08/Back-to-Action-low-resolution-version.pdf Accessed on 7 May 2019. 3. Arthritis-health. How to Sleep Better if You Have Ankylosing Spondylitis. Available [Online] at: https://www.arthritis-health.com/blog/how-sleep-better-if-you-have-ankylosing-spondylitis. 4. Prone lying is an exercise for good posture mentioned in one of the references (Arthritis Ireland. Living with Ankylosing Spondylitis. Available [Online] at: https://www.arthritisireland.ie/Handlers/Download.ashx?IDMF=a60cb008-5014-422d-b3d1-c04405e6f1a9 Accessed on 17 April 2020. 5. Spine universe. Ankylosing Spondylitis and Posture. Available [Online] at: https://www.spineuniverse.com/conditions/spinal-arthritis/ankylosing-spondylitis/ankylosing-spondylitis-posture Accessed on 16 April 2020. 6. Everyday health. How to Create an Ankylosing Spondylitis-Friendly Home. Available [Online] at: https://www.everydayhealth.com/hs/ankylosing-spondylitis-treatment-management/ankylosing-spondylitis-friendly-home/ Accessed on 17 April 2020. 7. Everyday health. Ankylosing Spondylitis: 6 Tips to Improve Your Posture, From Morning to Night Available [Online] at: https://www.everydayhealth.com/hs/ankylosing-spondylitis-treatment-management/tips-improveposture-morning-night/ Accessed on 17 April 2020.

To know more about the AS and its management, log on to





Track Your

Symptoms

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Track Your SymptomsEvery Ankylosing Spondylitis (AS) patient deals with symptoms differently, but it is important that you are aware of the symptoms and their changing intensities so as to track your progress more accurately. Tracking your symptoms can also help you have a more objective and meaningful discussion with your rheumatologist.

Did you know?Symptom worsening could be an indicator that your disease might be worsening.1

The first step to understanding your symptoms is mindfulness.

Record your symptoms

The simple and easy to use symptom tracker tool will help you keep an objective record of your AS symptoms and your progress.

Use self-observation

The skill of self-observation will help you notice small changes in your symptoms

4 steps to be ‘AS Symptom Aware’

Step 2Calmly think about your symptoms for the past week

Step 4Connect with your rheumatologist if you find your symptoms worsening.

Step 1Assign a day and time every week to fill the symptom tracker

Step 3Fill in the symptom tracker

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AS Symptom Tracker

Keep a track of your symptoms and empower discussions with your Rheumatologist.

Symptoms related to AS1

How would you rate your symptoms as compared to last week?

Better Same Worse

For disease activity Bath Ankylosing Spondylitis Disease Activity Index (BASDAI). Available [online] at URL: http://www.basdai.com/BASDAI.pdf

For functional indexBath Ankylosing Spondylitis Functional Index (BASFI). Available [online] at URL: http://basdai.com/BASFI.pdf

To monitor symptoms in more detail, following validated tools can be used. The URLs to access the documents are provided below. You may fill these out and take it with you for a discussion with your Rheumatologist.

Connect with your rheumatologist if you find your symptoms worsening

Flexibility (bending, turning)

Pain

Fatigue

Morning stiffness

Range of movement while exercising

References:1. Sieper J, et al. Ann Rheum Dis 2002;61(Suppl III):iii8–iii18.

In your fight against AS, every symptom matters. To track your symptoms, log on to





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living better with ankylosing spondylitis · your rheumatologist, who will be able to answer all...

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