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Rheumatology Living Well: Patient Information & Resources

Self-management

What is self-management?

Alongside medication, self-management techniques are important tools that can help you to learn what can help with living with and managing an inflammatory arthritis.

Having a rheumatology condition affects a person’s physical health, and can impact on other areas of a person’s life. This may affect a person socially, including their work and their relationships with their family; and psychologically, including a person’s emotional well-being.

Having difficulties socially or psychologically, can in turn impact on physical well-being, which can affect a person’s overall quality of life. This is why it is important to think about what will help with well-being: socially, psychologically, and physically.

The multidisciplinary rheumatology team are trained to support you within these different areas. This will enable you to develop the self-management tools that can help you to manage your condition.

Here are four videos that the Rheumatology Team in Fife in Scotland put together. These explain what self-management is and what can help with this:

Central to self-management, is thinking about Lifestyle Factors which support a healthy well-being. Some of the key pillars to this are:

  • Keeping active
  • Relaxation: including pacing
  • Eating healthily
  • Stopping smoking
  • Sleeping
  • Managing stress
  • Keeping connected with support from others

Suggested reading

The 4 Pillar Plan: How to relax, eat, move, Sleep. Your way to a longer, healthier life. Dr Rangan Chatterjee.

A Toolkit for Modern Life: 53 Ways to Look After Your Mind Hardcover. Emma Hepburn. 2020

Pain management

Flippin’ Pain Website: Live well with pain

Flippin' Pain is a public health campaign with a clear goal: to change the way people think about, talk about and treat persistent pain. This website contains lots of information and resources to help with understanding and living with pain:

Some other online resources include:

https://www.nhs.uk/live-well/healthy-body/how-to-get-nhs-help-for-your-pain/

https://www.nras.org.uk/managing-the-pain-of-rheumatoid-arthritis

Escape-pain - Self management for Arthritic pain using exercise (escape-pain.org)

Free Guided Meditation and Mindfulness Practices | Breathworks (breathworks-mindfulness.org.uk)

Reading recommendations:

NBT Pain Management Resources

Living with the Enemy: Coping with the stress of chronic illness using CBT, mindfulness and acceptance. Ray Owen. 2013.

Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch.
An inspiring and practical book. Good for anyone wishing to begin meditating and practicing mindfulness. Contains practical exercises.

Keeping active with arthritis

Keeping active is an important part of looking after your health when living with an inflammatory arthritis or another rheumatology condition.

Keeping active is good for your physical and mental health, and will help to:

  • keep your joints supple
  • reduce pain
  • strengthen your muscles and bones.

The Rheumatology Physiotherapy team at NBT have put together a series of videos which can be found here:

These include:

1: Self-Management Techniques

2: An Introduction to the Exercise Programme

3: Posture with a lumbar role

4: Lower limb exercises

5 - 7: Shoulder exercises

8 - 9: Wrist exercises

10: Neck exercises

11 - 14: Hand exercises

Different forms of exercise:

Pilates

A gentle form of exercise that focuses on breathing and core activation and control through movement. Low impact. Helps with balance. Very good for low back pain and improving core awareness. Often Pilates is completed on a mat, however occasionally classes use apparatus.

Yoga

Is a low impact form of exercise that challenges your mind, body and spirit. Yoga originated from India. There is a large focus on breathing, balance and improving flexibility. Some yoga is good for relaxation. Yoga can be challenging on the joints and is usually completed on your own mat. Be sure to find a qualified teacher who understands arthritis. There are many different forms of yoga, discuss options with the yoga teacher to find the right one for you.

Tai chi

Tai chi is an ancient Chinese tradition that, today, is practiced as a graceful form of exercise. It involves a series of movements performed in a slow, focused manner and accompanied by deep breathing. Normally performed in standing positions.

Walking

Walking is a great form of exercise that is low impact on your joints and can get your heart rate up. Groups are a good way to get into walking further afield.

Nordic walking: a sport or activity that involves walking across country with the aid of long poles resembling ski sticks.

Walking groups: Take a look at these organised walks to see which suits you.

Visit:

http://brunelwalking.org.uk/

http://www.bristolramblers.org.uk/

Swimming

Swimming is a low impact way to exercise. Walking and completing exercises at the end of a pool is a great way to improve your fitness. There are a variety of pools in Bristol, and it is advisable to check access into the pool if you struggle with metal steps. Some pools have a gradual stepping system to get into the pool. Look up 'everyone active' Bristol to find information on local pools.

Warm water pools

Completing exercise in warm water can relieve aching muscles and can help with relaxation and reducing anxiety, improves cardiovascular fitness and circulation. Often 'baby pools' are heated and have easier access, as do hotel and spa pools. Below are a few heated pools in Bristol.

  • Freeways Hydrotherapy Pool, Pill Road, Abbots Leigh, Bristol BS8 3RA, 01275 376082
  • Community Hydrotherapy Unit, 3 Church Road, Soundwell, BS16 4RH, 01454 862490
  • Healthy Hydrotherapy, Brunel Building, Southmead Hospital, Bristol BS10 5NB, 07971086628
  • Weston Hydrotherapy Pool, The Campus, Highlands Lane, BS24 7DX, 01934 427427

For further information online

Versus Arthritis: https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/

NHS exercise online: This contains gentle exercise for people of all abilities. This includes beginner level Pilates videos for specific conditions, including arthritis, osteoarthritis and fibromyalgia; bedtime meditation, and beginner level yoga videos. This also includes aerobic exercise classes such as dance classes and couch to 5km plans.

https://www.nhs.uk/conditions/nhs-fitness-studio/

Physical activity referral scheme.  This is an introduction to physical activity. It’s a 12 week scheme, involving a personalised exercise programme with a trained referral instructor, based around your health conditions and what you’d like to achieve.

https://www.bristol.gov.uk/social-care-health/physical-activity-referral-scheme

What to do in a flare

Often simple self-management techniques and a few days rest are enough to help with a flare.

If your symptoms gradually become worse, and persist for more than two weeks, you man need to contact the Advice Line to discuss treatment options.

Some general strategies for coping with a flare include:

  • Rest and relaxation
  • Use cool packs
  • Use hot baths or showers to relieve early morning stiffness and pain
  • Use aids, for example a stick if your knee is a problem
  • Do gentle exercises, to help relieve the stiffness that can make pain worse
  • Take your pain medication regularly and at the right dose
  • Let people around you know, so they are aware and can help if needed.

For further online information to help with managing a flare see:

NRAS: https://nras.org.uk/resource/managing-flares/

Versus Arthritis: 

The following video can help with some gentle exercises: https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/mindfulness-3

 

 

Emotional Wellbeing

Finding ways to look after your emotional wellbeing is important in helping you to cope with a rheumatology condition.

Feeling under a lot of stress, or coping with difficult emotions, can have other consequences that can also affect your wellbeing. This might make it harder to sleep, or do things that usually help with coping, such as keeping active or meeting up with a friend.

People find that feeling stressed for a prolonged period can affect their arthritis, such as triggering a flare.

Thinking about what might help support emotional wellbeing is an equally import part of looking after your physical health.

Here is a short video we have put together with some ideas around what could help with emotional wellbeing:

 

Further support:

Contact the advice line if you would like any further support with your emotional wellbeing. Options within the rheumatology team alongside your usual care include:

  • The Living Well with Arthritis Course: This is a seven session self-management course. From the feedback we've had, participants have found it helpful to meet and share ideas with others who are also living with an inflammatory arthritis or connective tissue disease.
  • This video provides further feedback from some of our patients who have completed the course:
  • Rheumatology Psychology Service: If you are experiencing ongoing difficulties with your emotional wellbeing and would like further support, contact the Psychology team directly or leave a message on the Rheumatology Advice Line.

Emotional wellbeing support outside of the rheumatology team:

Other resources:

Mindfulness and meditation Apps:

Our Specialist Rheumatology Nurse Alison Bayliss has recorded some mindfulness videos which can be found here. We hope you find these as relaxing, beautiful and helpful as we did.

 

 

 

Reading and podcast suggestions:

  • The Compassionate Mind Approach to Difficult Emotions: Using Compassion Focused Therapy. Chris Irons. 2019
  • The Mindful Way through Depression. Mark Williams, Jon Teasdale, Jon Kabat Zinn and Zindel Segal.
  • A Toolkit for Modern Life: 53 Ways to look after your mind. Emma Hepburn. 2020.
  • The Stress Solution: The 4 Steps to calmer, happier, healthier you. Rangan Chatterjee. 2018.
  • How to keep your immune system healthy. Podcast with Dr Jenna Macciochi talking to Dr Rangan Chatterjee. This discusses: the role of the immune system; nutritional advice and the role of stress and advice on reducing the impact of stress in your life https://podcasts.apple.com/gb/podcast/125-how-to-keep-your-immune-system-healthy-dr-jenna/id1333552422?i=1000493030956

 

Fatigue and Pacing

What is fatigue?

Fatigue is extreme physical and / or mental tiredness. It's quite different in quality and intensity to general tiredness, and it usually doesn't significantly improve after rest. It's often one of the symptoms of arthritis. If you have less energy day to day, it's important to think about what might help with managing this.

Below are some tips on managing fatigue.

Remember the 3 P's:

  • Prioritising - what matters to you the most?
  • Planning - what you need to complete the task
  • Pacing - taking regular breaks and breaking down tasks into smaller tasks

Understanding your fatigue:

There are many factors that might also contribute to fatigue, in addition to your health condition. Allowing yourself time to consider other factors which might also be affecting you can help you understand and think about what might help with this. This includes: stress; emotions; sleep; level of activity; medication; other health conditions. 

Having a good sleep routine is also really important.  

For more information see:

Filling in an Activity Diary can also help you to recognise patterns in energy and fatigue. This visual tool can help with recognising 'boom and bust' type patterns, and help with working towards more of a balance between activity and rest. 

Sleep

Why is sleep important?

Good quality sleep has many benefits for our physical and emotional wellbeing. Evidence suggests it's just as important as having a healthy diet and doing regular exercise.

Good sleep can:

  • Help concentration levels
  • Help with managing your pain
  • Allow your body to repair
  • Improve your immune system
  • Help with mental wellbeing
  • Help you to stay a health weight

Some tips to help with sleep include:

Sleep can be affected by having a long term health condition, and the physical and emotional affects of this. We have included some ideas and some further resources to help with this:

  • Regular sleep routine - regular bedtimes and wake times
  • Avoid caffeine after midday
  • Turn off electronic devices at lease an hour before bed
  • Sleep in a cool, dark room

Further resources:

Support at Work and in Education

Support at Work and in Education

Continuing to work or study whilst also managing the symptoms of a rheumatology condition, such as fatigue, can be a challenge. We have included some of the information and support that is available to help support you with remaining in work or in education, and with making the adjustments you may need in order for this to happen.

For more information about what support is available and what support you are entitled to access, NRAS and Versus Arthritis have some helpful information: 

NRAS resources about Work https://nras.org.uk/resource/work/

Versus Arthritis https://www.versusarthritis.org/about-arthritis/living-with-arthritis/work/

Astriid is an organisation which supports people with long term conditions with finding meaningful work https://astriid.org/

Our Occupational Therapy team are also able to offer support with adjusting to your role in work or in education. They are able to support you with finding out what you are entitled to access, and where to access this from. If you would like any further support with this, please ask for a referral to the Occupational Therapy Team, or contact the team directly. 

 

Family planning, pregnancy and parenting

Family planning, pregnancy and parenting.

If you are planning a family it will be really important to discuss this as far in advance as possible with your consultant. They will be able to discuss your treatment options with you and help you to prepare for this. 

The Occupational Therapy Team will also be able to help you to prepare for this or support you with adjusting to becoming parents. Please ask for a referral. 

Here are some resources that might also be useful:

https://www.versusarthritis.org/about-arthritis/your-experiences/your-questions-answered/your-questions-on-family-planning-and-arthritis

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/pregnancy/

https://nras.org.uk/resource/tips-for-parents/

Diet and Nutrition

Diet and Nutrition.

Looking after your body and what you eat is really important. If needed, making changes to what you eat could help with the symptoms of your arthritis. 

Research has discovered several links between diet and arthritis, so thinking about your nutrition could help with staying as well as possible. The two most important things to think about are: 

  • Your weight: if you're overweight losing some weight will help to take some of the strain off of your joints.
  • Having a healthy, balanced and varied diet: Whether your diet gives you the vitamins, minerals and energy that you need. A good diet can help protect you against some of the side-effects of medication and can help protect you from other health problems, such as diabetes and heart disease. This can also help with fatigue if you are nourishing your body with the right energy that it needs.

Some forms of arthritis are linked with an increased risk of heart disease and circulatory problems. Several of the diet and lifestyle changes which are useful for arthritis or autoimmune conditions, are also useful for heart and circulation health. This includes exercise and a balanced, varied diet.

For more information see:

Versus Arthritis: https://www.versusarthritis.org/about-arthritis/managing-symptoms/diet/

NRAS: https://nras.org.uk/resource/diet/

Podcast: https://drchatterjee.com/you-are-what-you-eat/

Podcast: https://shows.acast.com/feelbetterlivemore/episodes/-125howtokeepyourimmunesystemhealthywithdrjennamacciochi

Podcast: https://drchatterjee.com/feel-great-lose-weight/

Book The four pillars of Health: https://drchatterjee.com/book/

Rheumatology Living Well: Patient Information & Resources