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

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 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

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

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:

• VitaMinds Bristol: A free service that you can self-refer to. They provide advice and support with mental health. They provide a range of group or individual evidence based talking therapies. They also run groups for adults living with long term health conditions.
• Access their service here: https://www.vitahealthgroup.co.uk/nhs-services/nhs-mental-health/bristol-north-somerset-and-south-gloucestershire/ 

Other resources:

• Versus Arthritis: https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/
• NHS information and support for your mental health: https://www.nhs.uk/conditions/stress-anxiety-depression/ 

Mindfulness and meditation Apps:

• Headspace https://www.headspace.com/
• Calm https://www.calm.com/
• Breathworks https://www.breathworks-mindfulness.org.uk/

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

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:

• Versus Arthritis: https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/
• NRAS: https://nras.org.uk/product/fatigue-matters/

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. 

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:

• Versus Arthritis: https://www.versusarthritis.org/about-arthritis/managing-symptoms/sleep/ 
• NRAS: https://nras.org.uk/resource/sleep/
• NHS Mental health Toolkit has a section 'All about Sleep' https://www.bbc.co.uk/programmes/articles/YfRzhXDKSZQxFVn30TlXBj/your-mental-health-toolkit 
• Podcast Why Sleep is the Most Important Pillar of Health with Professor Matthew Walker and Dr Rangan Chatterjee https://drchatterjee.com/why-sleep-is-the-most-important-pillar-of-health-with-professor-matthew-walker/
• Bitesized Podcast: One trick to help you sleep better. Linda Geddes

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.

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.

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/

We would like to invite you to the next Living Well Signposting and Information Event in 2024.

What is this? 

This event is open to everyone who has recently been diagnosed with an inflammatory arthritis (such as rheumatoid or psoriatic arthritis) or connective tissue disease (such as lupus).

This introductory event will be an opportunity to:

• Hear from different specialties in the Rheumatology team including a Consultant Rheumatologist, Physiotherapist, Occupational Therapist, Specialist Nurses, Pharmacy, and Psychology. 
• Find out what support is available and how to access it. 
• Have a recap of some of the essential treatment information. 
• Find out more about your condition. 
• Hear from a volunteer about what they have found helpful while living with an inflammatory arthritis.
• Introduce ideas and strategies that can help with managing symptoms such as flare-ups, pain, and fatigue.
• Be part of an informal and interactive session where you can ask questions.

When and where? 

We recommend you choose the first possible date you can attend. 

Events are at Cossham Hospital or virtually on Zoom. You are welcome to choose which works best for you.

If you can’t make the dates in the table below and would like to know about future events please call us and leave a message.

To book a place on the date you can attend or ask any questions either email:

LivingWellRheum@nbt.nhs.uk

Or you can phone the Rheumatology Psychology Line and leave a message with your name, date of birth or hospital number, and the date you would like to attend:

01174142855 

Feedback from previous participants

"Sometimes other people ask questions you wanted to know about. I enjoyed hearing from someone else with arthritis about all the new information I suddenly need to know to manage this condition."

"It was so good to get clear, accurate information. And talk to others in the same boat."

"There was information about how the advice line can help me manage between appointments. It was helpful to hear from another patient whose condition is well controlled."

"It was useful to know about what other people find difficult. Their questions were different to mine and added to my knowledge. The talk by Ali was very informative, and it was good to learn about things that can make my life easier."

We have put together a series of short videos. These will introduce you to the different specialities within our rheumatology team. These will help you to know what is available and where to go to for support with your rheumatology condition, if and when you need this.

These will also introduce you to some of the key management strategies that can be helpful with learning to live with and manage a rheumatology condition.

We encourage you to be a partner in your healthcare. One way you can be more involved in your care is by asking key questions when you are in hospital. To help empower you to take a more active role in decisions around your care we promote an initiative called Ask 3 Questions to help you think about some of the areas you might want to focus on during conversations with doctors, nurses and therapists.

1. Preparing for your Rheumatology Appointment: Meet Dr Nicky Minaur, one of our Rheumatology Consultants who talks about what could help with preparing for your appointment. This includes some essential information about Lifestyle Factors, that will help with wellbeing.

2. Disease Modifying Medication: Meet our Consultant Pharmacist, who talks through some of the essential information about the more commonly used medications in rheumatology.

3. Emotional Wellbeing: Our Clinical Psychologist introduces some ideas that can help with looking after your emotional and physical wellbeing.

4. Rheumatology Advice Line: Meet our team of  Specialist Nurses, and find out what you need to know about the Advice Line.

5. Patient Experience: Meet Liz who talks about her experience of living with Rheumatoid Arthritis, and what's she's learnt along the way that has helped with this.

6. The role of Physiotherapy in Inflammatory Arthritis: Meet our Physiotherapy team who introduce the role of physiotherapy in rheumatology. This includes some adaptations and simple exercises that can help support wellbeing.

What is self-management? Here is a video that the Rheumatology team in Fife put together, that helps explain what we mean by 'self-management'. This includes some useful ideas which can also help with general wellbeing.

Further information:

NRAS (National Rheumatoid Arthritis Society) New To Rheumatoid Arthritis leaflet: https://nras.org.uk/product/new2ra/

For patients with inflammatory arthritis under the care of North Bristol NHS Trust

Patients and friends are welcome to come along for a friendly chat with a cup of tea/coffee and biscuits.

Third Wednesday of every month 2pm –4pm

Begbrook Club

Frenchay Park Road

Frenchay

Bristol

BS16 1HY

Flare-ups are the periodic increases in your usual amount of pain, which may last from a couple of hours to a couple of days or longer.

How you manage them can have a major influence on the impact they have on your overall quality of life.

It may be helpful to think of factors that may have added to your usual day to day pressures, as it is often an accumulation of factors that can cause a flare. It can be helpful to try and notice any triggers. Keeping a record of your daily activity and level of pain or fatigue can help with this. Have you done anything differently recently, or are you coping with any additional life events that feel quite stressful, worrying or distressing?

Think of what could be helpful to self-manage your flare. Some ideas include:

• Regular pain relief,
• Hot and cold treatment (such as wheat bags or ice packs)
• Pacing, prioritising, problem solving
• Keep active – keep gentle stretches going when possible
• Delegate or ask others for support
• Take time out for yourself

There is additional information on managing in a flare on the website.

If you have tried your flare up plan for two weeks and you are still struggling, please call the advice line to discuss your symptoms with one of the team. Further management strategies may involve changes or additions to your rheumatology medications, and / or a referral to another specialty in the team such as physiotherapy or occupational therapy.

It will be helpful to take a photo of your symptomatic joint (s) as sometimes flare ups ease when you are seen face to face.

It may be helpful for you to record your symptoms on the Living Well with Rheumatoid Arthritis app.  We can see this information and then better advise you on how to manage your symptoms over time. Please call the advice line for us to enrol you.

If you find that one of your joints is hot and swollen, if you have a temperature or feel unwell please seek more urgent advice.

All medications can have potential side effects. It may also be worth considering other causes of symptoms, such as allergies (hay fever, known food intolerance) and new washing detergents.

Please see the film called ‘medications’ for further information. This is in the ‘information for newly diagnosed patients’ on the rheumatology website.

Here are some ways to help minimise potential side effects:

• Take your methotrexate at night time to minimise feelings of nausea
• Increase your folic acid to 6 out of 7 days to help with methotrexate side effects
• Ask about a tablet to protect your stomach if you are taking oral steroids for a long period or a non-steroidal anti-inflammatory (ibuprofen).
• If you are having side effects from sulfasalazine, and have just started this, it might help to increase your sulfasalazine dose at a slower rate.  Please call the rheumatology advice line to discuss this.

To help minimise injection site reactions:

Injection site reactions are different to an allergic reaction they are generally mild and resolve after a few days.  The symptoms can include mild swelling, itching, pain, redness, warmth, rash. To help with these symptoms some suggestions include:

• Please take injections out the fridge 30 minutes before use.
• Ensure you inject in the manner you have been taught by the nurses in your rheumatology team or home care provider.
• Use a cold pack before and after the injection
• Use pain relief such as a non-steroidal anti-inflammatory
• Take an Antihistamine
• Use over the counter hydrocortisone cream

If you feel you have side effects that have not responded to the above, or the reaction is larger than your fist, please call the advice line for further input.

If you have an all over body rash, chest tightness, severe itching, hives (fluid raised bumps), swelling of the lips, tongue or throat please seek urgent medical advice.

If you are due to have a surgical procedure you should stop your biologic medication.  Please check the current guidance on when to do this with the rheumatology advice line team, as different biologic medications have different time frames to stop.

In general you should not stop your disease modifying drug as we would like for you to have stable disease, this puts you in a better place to recover from your procedure.

Some medications need to be kept in the fridge and only taken out shortly before the injection is due. This means you need to take precautions when travelling.

Keeping your medication cool

• Whilst travelling you can invest in a medications cool bag (such as ones made to transport diabetic medications).
• You need to take your medication in the cabin as the hold can be too cold.
• You can get a travel letter from your home delivery company (Sciensus, Lloyds pharmacy clinical homecare, Healthnet) which lets your airline know that you should be taking your injections on board a flight. Please let your home delivery company know in advance.
• When you are at your destination you need to make sure your items are kept in a cool, dark space to ensure the integrity of the drug.
• Please ensure you can dispose of your medication safely whilst travelling.

Flu vaccines, are not live vaccines, and are recommended for those who are on disease modifying medication.

Should you need a live vaccine e.g. for travel reasons please contact the rheumatology advice line as live vaccines should not be administered if you are on disease modifying medication or biologic therapy.

Live vaccines include - Shingles, varicella (chicken pox), MMR, TB, oral polio, yellow fever, rotavirus.

If you are having blood tests to monitor your disease modifying medication your GP may contact us and you to get further advice,  for example if your liver enzymes are higher than normal.

This can happen from time to time and is usually returns to within normal limits when blood tests are rechecked.

Sometimes the cause can be easily identified – such as a higher intake of alcohol than normal just before your blood test. Everyone is different and we may have different advice for different people regarding altered blood tests; within the Bristol, North Somerset and South Gloucestershire rheumatology departments we have guidelines in place to help with this process.

If your blood tests identified as being too high or too low:

• Please stop your medication and call the North Bristol Trust rheumatology advice line
• We will then make a plan to have further blood tests or investigations and make a plan to restart your mediation at a certain point.

If you have any questions regarding over the counter supplements or herbal remedies and their place in your management plan, then please call the advice line to discuss this before taking them. Some of these therapies interact with other medications.

If you have queries about you biologic delivery that has not been resolved by your delivery company then please call the advice line to see if we can help.

Patient Enquiries telephone:

Sciensus (Previously known as Healthcare At Home) : 0333 103 9499

Lloyds Pharmacy Clinical Homecare : 0345 263 6135

Healthnet: 0800 083 3060