Start with a ‘win’

It can be helpful to start your day or week with a win. These could be a big win or a tiny win, it doesn’t matter. It’s all about focusing your attention on something positive.

Breathing exercise: diamond breathing

You may have heard of ‘belly breathing’ or ‘diaphragm breathing’. This is where you take deep breaths, filling your whole lungs and moving your belly. When feeling stressed or anxious, we often take shallow breaths and feel tense in our neck, shoulders and chest. Diamond breathing helps you take slower, deeper breaths:

• Create a diamond shape by putting your thumbs together and index fingers together
• Keeping this shape, place your hands on your belly with your belly button in the centre of this diamond
• As you breathe in, imagine you’re pushing the diamond in front of you, with your belly expanding like a balloon
• As you breathe out, imagine your belly flattens and the diamond sinks down towards your spine
• Keep your shoulders down and relaxed
• Repeat for a few breaths until you feel calm and your breathing has slowed comfortably

Breathing exercise: 4-7-8 breathing

Counting your breaths can be helpful to focus your mind and distract you from any pain or stressful thoughts. The 4-7-8 technique helps you breathe out for longer than you breathe in, which is calming and soothing. This exercise is particularly helpful if you’re finding it difficult to get to sleep.

• Breathe in for a count of four
• Hold that in-breath for a count of seven
• Breathe out for a count of eight
• Repeat times

If the counts seem too long, you can alter them to suit you. As long as you breathe out for longer than you breathe in, it will be a soothing exercise.

Upper body stretches

Watch the full session with Ali to try out some seated stretches for your neck, back, ribs and shoulders. If you’re unsure these stretches are suitable for you, check with your doctor or physiotherapist first.

Guided meditation

Ali finished by guiding us through a wonderful meditation (link to full video) and we received amazing comments about how the session helped everyone. For a taster to meditation, you can watch Ali’s taster video below:

More information

Ali Potter is a Health & Mindset Coach and Osteopath. Read more about Ali and her work on her website.

My AS My Life

We’re holding regular My AS My Life Facebook Lives to help you manage your axial SpA. Check out our upcoming sessions.

The post Relaxation and meditation for stress and pain appeared first on ASone.

You know your body.

The first lesson I learnt? You know your body, so there is no better person to judge your health. While this may not be true at the start of your journey with axial SpA (AS), when it can be difficult to understand what’s going on, in time your knowledge of your body coupled with your healthcare team’s medical expertise will help you manage your axial SpA (AS) as best you can.

Managing a chronic health condition takes a lot of time.

This may seem obvious, but there are so many hidden things related to managing a long-term condition like axial SpA (AS). From keeping track of medical appointments, ordering medications and taking them as prescribed, to exercising daily to keep the pain and stiffness at bay. It really does affect all aspects of your life and takes so much time!

The effect on your mood and mental health cannot be understated.

Living with chronic pain can take a toll on your mood, but sometimes the way axial SpA (AS) affects your day-to-day activities can have an even bigger impact. Different people experience it in different ways, but for a stubborn person like myself I can struggle with my mood when my condition stops me doing things I want to do. It is really important to look after your emotional wellbeing to limit the impact it has.

You need a strong support network.

The people around you matter greatly and everyone finds support in different ways. Whether it’s family and friends, online groups or your local NASS Branch, having support is essential. I’ve met some of my best friends through axial SpA (AS) groups!

Medical appointments can be overwhelming.

Medical appointments can be overwhelming, particularly when you’ve recently received your diagnosis or you’re struggling to get your symptoms under control. Taking someone to your appointment (or sitting with you during a phone appointment) will give you added support and help take in all the information you discuss. Preparing a list of questions before the session is equally as important as writing down the key things discussed during. We’ve put together a guide to remote appointments and a handy worksheet to help you prepare.

I hope you’ve learnt some new things from my experiences. What have you learnt from having axial SpA (AS)?

Zoë Clark is our Self Management Programme Officer. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. 

Zoë is available on the Helpline, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like. 

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post What I’ve learnt from being a patient appeared first on ASone.

Having been diagnosed with axial SpA (AS) when I was 23-years-old, I was concerned about what the future would hold. My dad has the same condition, and while I was growing-up I witnessed some of the difficulties and challenges the disease causes in everyday life.

As someone who is usually very positive and optimistic, I felt as though I could handle it. When I started experiencing symptoms and speaking with my dad about it, we both had a suspicion it could be axial SpA (AS).

Even though I had my suspicions, actually hearing my rheumatologist give me the diagnosis felt very daunting.

Here’s a video I made about Ankylosing Spondylitis talking about how I was diagnosed:

Being very passionate about my work and operating two businesses, I am a mobile DJ and website designer. One of my immediate concerns after I got diagnosed was being able to work in the same capacity as before.

Once I came to terms with my diagnosis I became determined to continue doing what I enjoy and decided nothing was going to stop me.

I created an action plan. I thought what could I do to best manage the condition, after a lot of research and speaking with my rheumatologist it was clear the answer was regular exercise, monitoring pain levels and diet. I started working with a personal trainer which helped me create a workout plan and ensure I was exercising with a good technique to prevent injury. Once I had a regular workout routine and had a healthier diet I noticed my pain levels reduced, I’d still have flare-ups from time to time but they were more manageable.

After a while I was fortunate enough to attend a two week axial SpA (AS) course at the Royal National Hospital For Rheumatic Diseases (RNHRD) which allowed me to learn more about the disease, learn new exercises and speak with other people that had the condition which was invaluable. I’d highly recommend the course to anyone that has the opportunity to attend.

Nowadays, I continue to manage the disease through regular exercise, I aim for 3 gym workouts per week, daily stretches, regular walks (having a dog certainly helps) and attend regular NASS sessions for an additional gym session and hydrotherapy. I also keep an eye on my diet as I’ve noticed too much fatty food tends to trigger a painful flare-up.

Taking the time to learn about axial SpA (AS) and how my body reacts to certain situations has allowed me to continue working and doing what I am passionate about.

While I want this post to be positive and inspire others, I want to make it clear I still experience pain, flare-ups and heavy fatigue on an ongoing basis. I’ve accepted the condition isn’t going anywhere and know sometimes it’ll be more difficult than others, however, I’m certainly not letting this disease take control of my life.

Richard is a multi-business owner who lives with axial SpA (AS) and has started documenting his journey on YouTube. You can follow Richard on Instagram, YouTube and Twitter.

The post Running Businesses with Ankylosing Spondylitis appeared first on ASone.

Getting to and from school or university

When travelling on public transport or on a bus:

• If you experience lots of fatigue, ensure you sit down on your journey
• On public transport in London, use TFL’s badge and card to access a seat when it’s busy (link to https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat )
• Get off transport a stop early to include a short walk in your journey if you’re looking for ways to increase your activity during the day

When driving:

• Ensure your seat is positioned comfortably and the back of the seat is comfortable
• If you experience low back pain when driving, a small cushion behind your low back strapped to the seat can provide some extra support
• You can buy reasonably priced heated seat covers that connect to your car
• Ensure the head restraint is positioned to be behind your head (not above it or below it). Also, check that the head restraint is in a neutral position, rather than pushing your head forwards.

When you’re carrying books…

Carrying can be helpful to keep the muscles in your back and legs strong, but if you find carrying things daily to be difficult, these tips may help:

• Use a locker to limit the amount you carry every day
• Use a rucksack with the straps on both shoulders or a cross-body bag
• If you are transporting lots of things, use a suitcase or box on wheels
• Ask for help from friends when moving between classrooms/lecture halls

If you find sitting for long periods difficult

For most people with axial SpA (AS), the most difficult thing during studying is the amount of time sitting at a desk. While you can’t reduce the time needed, there’s lots you can do to make it more comfortable.

Speak to your school, college or university about chairs available that may be more suitable. If they’re unable to change the seat, you could use a cushion or inflatable pillow to sit on or place behind your back to help.

No matter how comfortable your seated position is, the best remedy is to move regularly. If your teachers are aware of your condition, they should be happy for you to stand, stretch and move during lessons if your back is feeling stiff or painful. If you feel self-conscious about this, sit at the back of the classroom or do these simple seated stretches.

Top tips for studying at home

When studying at home, try to invest in a desk and chair to make sure that you’re set up well. Sitting on a Swiss ball or standing for a period of time while working can be really beneficial. For more detailed information, read my previous post on working from home.

Similarly to during lessons, it’s important to get up and stretch or walk regularly. When you’re studying at home, it’s really easy to get distracted and spend hours sitting in one position. Set a timer on your phone for every 50 minutes as a reminder to get up and move. This is great for axial SpA (AS), but it also helps your concentration and fatigue.

The best advice is to pace yourself

Managing your workload and pacing is really important to help manage fatigue and it also helps as a ‘safety net’ if you have a flare up just before a big deadline. Poppy shared some great advice previously about how she breaks down coursework and assignments so she can complete them gradually over time.

Listing the tasks you have to do can be really helpful to keep track of everything. You can then prioritise each task so that on days when you have less energy, you know what to focus on first. It can also be helpful to break each task down into smaller amounts. Not only will this help you pace your energy, it’s also less daunting.

Resting regularly can help manage your fatigue. It may be helpful to organise a quiet place you can access to rest during breaks and lunchtimes if needed.

Having a conversation with your school, college or university about your condition

It’s really important to speak to your school, college or university to explain that you have axial SpA (AS) and how it affects you, so that they can provide the support that you may need. Even if you feel you don’t currently need any accommodations, if the institution is already aware, then they can easily give assistance at a later date if anything changes.

When applying to college or university, it can be helpful to discuss what accommodations are available to help decide which place to attend.

We’ve put together this prompt sheet to help you discuss your axial SpA (AS) with your teachers and school/university. You can use the first sheet to clarify your thoughts and needs, then use the second sheet to communicate these. We’ve put a simple explanation of axial SpA (AS) on the second sheet, but it’s important you explain how your condition affects you personally.

Create a great healthcare team

It’s always essential to have a supportive healthcare team around you. When making decisions about places of education and accessing support, speak to your rheumatologist or GP about what supporting documents or guidance they can provide. Your doctor may be able to refer you to a physiotherapist or occupational therapist to help you see what support or accommodations may be beneficial to ask your school/college/university for.

If you’re moving to a different area for college or university, discuss this with your healthcare team to decide how best to continue with your ongoing care.

Managing your axial SpA (AS) well when you’re away from home

We have lots of information on our website about self-managing your axial SpA (AS), which may be particularly helpful if you’re living away from home for the first time. Visit the My AS My Life page to see the different topics we cover.

There’s lots of support available for you

Legally, educational institutions have to provide support to disabled students. Read our step-by-step guide to the support you should be able to access and how to do this.

For financial support, you may be entitled to Disabled Students’ Allowance (DSA). Find out more about this and how to apply here.

If you want to read more

Jenni has previously shared her experiences of training to be a physiotherapist while having Seronegative Spondyloarthritis.

Bethany Dawson and Bethany Bale are both university students who live with invisible illnesses. You can read about their experiences and also get more information on their non-profit organization BVisible here.

We asked a student!

We got in touch with Bethany (Dawson!) for her thoughts on studying with axial SpA (AS) and she gave us these incredibly helpful tips:

The impacts of Ankylosing Spondylitis came on when I was thirteen, and for all my teen years I believed that University was going to be something too big and too much for me. When I got to University to study Politics and Sociology, it felt like a bit of a shock. For all the advice that was given to freshers about how to settle in, how to study well, and how to succeed, none of it was tailored to students with a disability, let alone AS. So, here’s how I’ve managed to balance the two things:

• Communication. Get yourself well acquainted with your course leader, your personal tutor, and your lecturers. I’ve been incredibly lucky to be in the loveliest and most supportive department, which has meant I could comfortably explain my needs to all my teachers. On top of this, get in touch with your disability support team at your University. Even if you don’t think you’re going to need any special support, a conversation with them about you and your AS can show exactly how your University can support you. For me, I have been supported by using a laptop in exams as my hands are impacted by my AS, and I also get to record lectures in case pain or fatigue is too bad to retain all of the important information.
• Pacing. Right, so every lecturer is going to tell you not to leave your essays to the last minute, and whilst this is very true for your grades and stress levels, it’s really important to manage pain and fatigue, too. If you push yourself too hard with library all nighters and cramming for exams, your body won’t thank you for it, and chances are it could potentially aggravate your symptoms. Plan when you work and when you rest, and get to those deadlines with time to spare. Your mind and body will thank you.
• Believe in yourself, you can do this. This is a cheesy sentiment, which is my speciality, but truly: you’ve got this. It’s so easy to believe this is beyond you, especially when you’re in a lot of pain, but you can do this. You’re more than your AS, and you’re going to do this and smash it. Put yourself first, ask for what you need, take breaks and look after yourself. You can do this.

The key points

• Speak to your healthcare team about what support or accommodations may be helpful for you
• Use our prompt sheet to help you speak to your teachers and educational institution
• Making small changes can have a big impact on managing your axial SpA (AS) while studying

Zoë Clark is an osteopath living with axial SpA (AS) herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joined the NASS team to help you keep active and feeling well.

Zoë is available on the Helpline, so if you’d like to have a chat then please get in touch and we can arrange a free call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Studying with axial SpA (AS) – a guide appeared first on ASone.

Growing up in a medical household led me to have a fascination in all things medical, and delving into the pre-hospital field has been an eye opening, rewarding and exhilarating experience.

I wanted to take on a career which is well known to put great strain on the body.

Many paramedics retire early with back issues. At my very first occupational health appointment I was questioned if this career would be right for me. This made me question my choices.

I felt they were putting a label on me. That axial SpA (AS) was just seen as a crippling disorder. I knew this wasn’t the case.

It’s an incredibly variable condition and everyone has a different story. I did not want my axial SpA (AS) to determine my life path for me.  I felt confident my axial SpA (AS) was well under control, and I planned to remain active so that my joints stayed as strong and healthy as possible.

Three years on, I can happily say my axial SpA (AS) hasn’t got in the way of my profession.

I do get pain when sitting for long periods in the ambulance and when I am doing more manual handling than usual on particular jobs. However, I stick to a stretching and yoga regime which prepares me well for my shift, and I had gotten into a habit of swimming regularly which eases my pain on my days off.

Prior to the covid outbreak I was only several weeks from finishing and qualifying to be a paramedic. After three years of hard work, I ready to be an independent paramedic working on the front line.

At the start of the lockdown it was decided that, because I take biologic medication, I had to be taken off the road. This means my qualification has had to be delayed and I will be starting my job as a paramedic later than hoped.

During lockdown, not able to work and with swimming pools closed, I have struggled. I felt frustrated I could not finish my course and start my dream profession. I felt jealous of my friends who were able to qualify early, and start work while I have been stuck at home.

My pain became more frequent and I suffered a bad flare up. Mentally, this took a toll on me and I desperately wanted to get back into a routine so I was ready to go back on the road as soon as I can.

I invested in a TENS machine which has been a great help with the pain. I can only speak from personal experience, but I really recommend them. I’ve got back into have been stretching daily, and trying to go on frequent walks to free my mind and appreciate the nature around me.

I hope by the time this article is published I’ll be qualified and working in my dream job!

This blog was written by Monika, who became NASS’s youngest trustee when she was elected at the age of 21. She aims to raise awareness and spread support to young people dealing with a diagnosis

The post On the front line – what it’s like to work as a paramedic with axial SpA (AS) appeared first on ASone.

What causes fatigue?

There are lots of possible causes of fatigue in axial SpA (AS), including:

• Active inflammation
• Chronic pain, particularly if it affects your ability to sleep comfortably
• Some pain medications can cause drowsiness
• Muscle weakness
• Anaemia related to inflammation
• Depression can cause physical symptoms, including fatigue

Managing axial SpA (AS)

As always, it’s really important to speak to your rheumatologist if your axial SpA (AS) is not controlled enough. Fatigue due to active inflammation is something your rheumatologist may use to decide whether to change the way you manage your condition. If your fatigue is impacting your activities or daily life, or you’re experiencing frequent flares, speak to your rheumatology team for specialist advice.

Your rheumatologist may refer you to an Occupational Therapist specialising in this area or a course to help you manage your fatigue. Fatigue is an important symptom to discuss with your rheumatologist, because there may be something they can do to help.

When to see your GP

Fatigue can also be caused by other medical conditions, such as anaemia, so it’s important to speak to your GP. Your doctor can check for any other causes of fatigue and give individualised advice.

If you’re unsure whether your pain medications are causing drowsiness or fatigue, speak to a pharmacist for a medicines review. They may be able to make suggestions such as adjusting the time of day you take your medication. If the pharmacist thinks it’s necessary, they will suggest you speak to your GP or rheumatologist about possible alternatives.

Fatigue can affect you mentally, as well as physically. If you are concerned about your mood levels or think you may have depression, speak to your GP about the range of advice and support on offer. Physical and mental health go hand in hand and one can easily impact on the other.

Pacing

Pacing is about balancing activity and rest to help learn to manage your fatigue. Although it sounds like the easiest piece of advice to follow, it’s actually very difficult. It can be very effective at managing fatigue, but it requires a good understanding of the principles of pacing, combined with commitment to making them work for you.

It’s very easy to get into a boom and bust cycle by overdoing it on a ‘good day’ and then spending days recovering afterwards. It can be very difficult, but it’s important to pace well even during good days. You may have to remind yourself about pacing more on those days, but it’s well worth it.

The nature of axial SpA (AS), with flares and fluctuations of symptoms, can make it very difficult to predict how much is ‘too much’. The important thing to remember is that you can always strive to pace well, but do not tell yourself off if you overdo it one day. You’re only human! Sometimes fatigue will worsen for seemingly no reason and it’s not your fault. There are some practical tips that can help with pacing.

Keep a diary

Our guide “Living with axial SpA (AS) Fatigue” has a template diary to track your activities, your rest time and your sleep. It’s colour coded so you can easily look at the week and assess how you’re pacing your activities. You may then be able to suggest changes to your week to manage your fatigue.

Prioritise tasks and activities

After using the diary for a period of time, you can assess how to prioritise tasks and activities. This can be helpful because it’s sometimes difficult to know how much energy you will have in the day. If you have any important or urgent tasks, prioritise these and do them first to ensure you get them done. Then you can move onto other tasks if you have the energy afterwards.

Break tasks down into smaller jobs

Assess any task that you’re planning and, if needed, break down into smaller tasks that you can spread out over time to pace yourself.

Get a pacing buddy

If you know someone else with a condition that causes fatigue, you can be each other’s pacing buddy. The role is to give each other a friendly, non-judgmental nudge if one of you is overdoing it and at risk of aggravating fatigue.

It’s also helpful to have a buddy who you are comfortable talking to and discussing your axial SpA (AS) with. Talking about how you’re feeling can be really helpful for your mental health.

Ask for help

Speak with your friends and family to discuss how they can help you in different ways. It’s best to do this on a day when you’re feeling well, because during a higher pain or fatigue day, it may be difficult to articulate what you need.

It’s important for friends and family to understand that they can’t tell how you’re feeling based on how you look. Good communication is key, because pain and fatigue are invisible. It’s also important to explain that your needs will vary day to day.

Some people find the Spoon Theory very helpful for explaining chronic fatigue to loved ones.

Don’t be afraid to say no

When managing fatigue, there will be times you have to say no to someone for your own wellbeing. It can be very difficult, but over time this will get easier. It can be helpful to explain that sometimes you have to say no, even when you don’t want to.

Plan meals

Eating well is important to keep your energy up, so planning meals in advance will help ensure you’re prepared for high fatigue days. Bulk cook and freeze meals so that you have a back up if you’re unable to cook.

Resting

Rest doesn’t have to mean sleep, there are lots of different activities that are restful, but will keep your mind occupied. For example:

• Reading
• Watching TV
• Crafting
• Speaking to someone
• Having a warm bath
• Meditating
• Breathing exercises (link to breathing exercise sheet)
• Relaxation techniques

Rest periods can be spread throughout the day, such as resting for ten-minutes every hour or so. There is no correct way of planning your rest times, it will be very different for each person and depending on your symptoms each day.

Sleep

Pain disrupting your sleep over a long period of time can cause severe chronic fatigue. For detailed advice about managing night pain and general sleep advice, you can watch our previous video or read the blog post. (Links to night pain video and blog)

Exercise

It can seem counter-intuitive, but exercising regularly can help you manage fatigue. Breaking exercises down into smaller sessions can help reduce the tiredness you feel afterwards.

Muscle weakness can aggravate fatigue, so it’s important to do some strength training each day. Simple sit-to-stand exercises or arm exercises using light weights (or tins) are a great place to start. You can build up to doing press-ups against a wall and lunges.

Some people progress to doing exercise classes, such as yoga or Pilates. For exercise classes, it’s important to start with a beginner’s class and find an instructor who has good knowledge of your condition. Be sure to modify any exercises to ensure they are safe for you.

Exercise is really important for managing axial SpA (AS) long-term, so discuss with your rheumatologist or physiotherapist any barriers to exercise that you experience. They will be able to help you form achievable, individualised goals with a plan on how to reach them.

Diet and nutrition

There is no set diet to help with fatigue, but it’s important to maintain well-balanced nutrition. Over-eating and under-eating can cause fatigue, so it’s important to plan your meals well.

Maintaining a health weight and drinking plenty of water to prevent dehydration can improve energy levels. If you have anaemia, your GP may prescribe iron tablets, but ensuring you have lots of iron-rich foods in your diet can be a useful addition. Iron-rich foods include:

• Meat
• Beans
• Nuts
• Dried fruit
• Liver (but avoid during pregnancy)
• Wholegrains
• Cereals fortified with iron
• Most dark green leafy vegetables

If you would like to make major changes to your diet, speak to your GP or a nutritionist for specialised advice first. The NHS website has good information on vitamins and minerals.

Leave room for your golf balls

I really recommend watching Occupational Therapist Clare Clark’s video on leaving room for your golf balls.

You can watch my video on this subject here and if you have any top tips for managing fatigue that we haven’t discussed, please leave a comment.

Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Managing Fatigue with axial SpA appeared first on ASone.

In this blog, I’ll be discussing how axial SpA can affect the hip joints and how you can help manage the symptoms. Firstly, a quick anatomy recap! The hip joint is formed by the thigh bone meeting the pelvis, in a ball and socket joint. The shape of the joint means that the hip has a good range of movement needed for activities we do throughout our daily lives, but it also relies on strong ligaments and muscles surrounding the joint for support.

The hips are important in transmitting force from our legs into our pelvis and spine during activities such as walking and running. Inflammation in the hips due to axial SpA can cause pain and stiffness. Long-term, some people do experience boney changes to the hip joints, leading to restricted movement. The key to preventing changes to the joints is to manage the inflammation itself, which is guided by your rheumatology team. However, there is lots you can do yourself to help ease the symptoms and maintain your hip movement as much as possible.

The Importance of Healthy Hips

Healthy hips are important if you have stiffness or fusions in your back that limit your spinal movement. For example, if you’re reaching for something on the floor and can’t bend forward with your spine easily, being able to squat down using your hips will help compensate. Similarly, if your back leans forward slightly, being able to stretch the front of your hips will help keep you more upright and assist with reaching overhead.

It’s never too soon to start exercises for your hips, so I hope this blog will give you ideas on activities you can do. As with all exercises for axial SpA, they need to be consistent and persistent.

Some activities and hip exercises will improve mobility and strength at the same time, but for the purpose of this blog I will separate them into two sections.

Hip Mobility

Exercises that will help the movement in your hips include:

• Walking
• Jogging or running
• Swimming, hydrotherapy and aqua aerobics
• Tai chi and qi gong
• Yoga
• Pilates
• Cycling or spinning
• Rowing machine
• Classes such as aerobics, step classes, Zumba

Hip Strength

Exercises that help increase the strength of muscles surrounding your hips include:

• Walking, jogging and running
• Cycling
• Cross trainer
• Rowing machine
• Climbing stairs or using step machines
• Squat movements (including sitting to standing movements)
• Yoga and Pilates
• Resistance band exercises
• Classes such as circuits, aerobics, step classes, Zumba
• Swimming, hydrotherapy and aqua aerobics

Hip Replacements

Around a third of people with axial SpA have hip involvement with their condition, but many people manage their symptoms well without needing surgery. For some people, hip replacement does become necessary. If this is needed, the surgeon and physiotherapy team give exercise advice for before and after surgery to ensure recovery is as fast as possible.

Is Running Safe?

Running is a great form of exercise to improve or maintain your strength, mobility and general fitness. Some people find that running can be too much impact for their joints with axial SpA, but some people find it beneficial when gradually built up over time.

If you wish to start running, ensure you have good quality trainers with plenty of support to limit impact. Start with a mixture of walking and jogging over a small distance while you build up your fitness and monitor your axial SpA (AS) symptoms in the days after a jog. Some apps, such as the Couch to 5k app, guide you through a safe programme to gradually build up the distance you’re able to run.

As with any new exercise, it’s important to monitor how your body responds to it. Using an app to track your axSpA (AS) symptoms over time can show if the new exercise is aggravating or helping. You can find the ‘MySpA’ and ‘AS Symptom Tracker’ apps in the App Store or Google Play Store. You can also track your symptoms by hand in a symptom diary. Note down each week your average pain score out of ten (zero being none and ten is the worst pain), how long your back remains stiff in the morning and any other key symptoms. You can also note down when you’ve run, with times and distances.

If you find that running triggers your symptoms, you could try using a cross-trainer or cycling to reduce the impact.

Shoes

When you’re active, supportive shoes support your feet/ankles and cushion your steps to support your hips well. It’s well worth investing in good quality trainers for sports and walking boots for longer walks, especially on rough ground. For day-to-day activities, well-fitting shoes with a thick sole are the most appropriate.

Self Care

To help ease hip pain and stiffness, you can use ice/heat locally and massage the muscles in the area.

Heat:

Use a heat pad or a hot water bottle wrapped in a towel placed over the painful area for 10 minutes. You can repeat this regularly throughout the day.

Ice:

Use an ice pack (or bag of frozen peas) well wrapped in a towel. Place over the painful area for 5-10 minutes. You can repeat this regularly throughout the day.

Never place ice directly on the skin, because this can lead to ice burns.

Massage:

Using the heel of your hand, a tennis ball or a spikey massage ball, gently massage in small circular movements. You can do this to the muscles around the front and side of the hip, the thigh, buttock and low back.

Massage for a couple of minutes before taking a rest to ensure you don’t bruise the area. It should be a comfortable amount of pressure and shouldn’t be painful during or afterwards.

Summary

There’s lots you can do to help reduce and manage hip pain and stiffness. If you’re concerned about hip pain or if this advice doesn’t help, discuss your symptoms with your rheumatology team.

Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

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Hi everyone!

My name’s Pete and I’ve taken over from Jakub as your ASone admin!

I just wanted to write a short introduction and to welcome newcomers to the ‘Your Posts’ section.

Here you can share your experiences, advice and knowledge of living with and managing axial spondyloarthritis (axial SpA) including ankylosing spondylitis (AS). Please feel free to post anything you think will be interesting and engaging but most importantly, let’s keep things honest and supportive, while keeping the swearing to a minimum!

If you would like to contribute something more in-depth and longer, then we would love to hear from you in our Guest Blogs section, so if you have any ideas on this, or anything else, please email me at peterdowson@nass.co.uk.

Thanks for reading this and keep going!

Peter

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I had great initial care after being diagnosed as I was under private healthcare. Now I love the NHS and I love working for it but I had what I now know to be glaringly obvious symptoms of AS and I saw 3 different orthopaedic surgeons, 2 rheumatologists and countless other healthcare professionals in the 13 years and none of them managed to piece the seemingly obvious puzzle together, until I went private and a week later had my diagnosis. Part of me feels this is because of my gender as in university even today you are taught that AS is almost always found in men. Then when I was offered Anti-TNF I was told I had to go to the NHS.

I was referred to one hospital that shall remain nameless, in the 2 years I was under their care I was “forgotten in the system” when I was told I needed to change from humira to Enbrel and went 4 months with no medication. When I was flaring I had no access to my rheumatological nurse as they never answered the phone or rang me back and when trying to discuss my peripheral symptoms was told “We are only interested in your spinal pain as AS only affects the spine” by the head of the department.

Now there are countless studies out there. One promoted by NASS that conclude women are affected by a higher disease burden and are more likely to have peripheral involvement. As I progressed through my degree I began to realise this is not the sort of service I should be putting up with so I put in a formal complaint to PALs and changed hospitals and it was honestly the best thing I ever did. It was hard to believe that 10 miles “down the road” I was receiving such different care. I felt listened to and more importantly heard and believed which made me feel empowered over my care, and that there was light at the end of the tunnel. It was this feeling that I knew I needed to give my future chronic pain and rheumatological patients.

As a qualified physiotherapist I never let any patient leave my cubicle until they knew I understood and I am happy to advocate for them and empower them to take charge of their health. The unfortunate thing as a healthcare professional is you get a 1 hour lecture on AS and you are taught the “red flag” questions but actually until they’ve met those patients affected or experienced that level of pain and at times unusual symptoms they are usually under prepared to deal with the AS cohort.

But don’t get me wrong there are some amazing healthcare professionals out there but again these are few and far between and usually each trust only has one rheumatology specialist physiotherapist which seems absurd for such a massive cohort of patients and usually leads to long waiting times and plenty of frustration.
One other thing I’ve noticed as a healthcare professional is the massive gap between paediatric and adult services. I was lucky enough to complete a student placement at Great Ormond Street Hospital in the paediatric rheumatology department. Now I feel paediatric services are miles ahead of adults! They have inpatient rheumatology wards where patients flaring are sent to receive intensive treatment, those that are coming off their immunosuppressant drugs for procedures are carefully monitored by the medical team. They have access to specialist rheumatology physiotherapists as inpatients to help keep them moving and reduce their pain during a time they often are off their medication and are not exercising as much as they are unwell or recovering from a procedure.

They have regular check-ups like the adults except in the room are the consultant, the physios, the occupational therapists and the psychologists, holistically treating the patient all together in one room as a team.

This team then meet separately once a week to discuss those more complex patients and plans to help them if they are struggling with pain or day to day activities, they write to those children’s schools advising them on their limitations and ways to help them thrive.

In London alone you have GOSH, the Evelina and Stanmore who provide a 2 week intensive rehabilitation course for those children newly diagnosed or struggling to cope, the adult services have Bath and Stanmore in the whole of the country… I’ve never come across an inpatient adult rheumatology ward, we as adults are expected to try and see our overbooked rheumatologists as outpatients and still cope living at home, many of whom live alone and if we are admitted we are admitted to wards who have no idea how to manage our condition. Equally I’ve come across so many arthritis patients struggling off their meds, had surgery and that has brought on a flare. I enjoy treating these patients and try to pick them up on whatever caseload I am managing at the time, so much so I’m hoping to highlight the gap in my trust for inpatient rheumatology physiotherapists.

And equally I don’t think I’ve ever experienced a multidisciplinary meeting as patient or a professional for rheumatology patients, it’s a case of seeing your rheumatologist once every 3-6-12 months and the rheumatology nurse in-between, and if needed you can be referred to a rheumatology physiotherapist but they have a waiting list of weeks and by that point your flare is most probably over.

I really feel we are at a point where not only we should be highlighting the amount of time it takes to get patients diagnosed, but with the NASS lead Every Patient, Every Time campaign, we should be highlighting a national standard of treatment for patients from borough to borough and from paediatric to adult services because at the end of the day, if we as patients are expected to self-manage and champion our own care of our long term condition then we should have access to the same standard of professional and care wherever we are in the country.

Steph is a newly qualified physiotherapist that happens to have ankylosing spondylitis and blogs about it.. a lot! Find her on Instagram, or visit her Blog.

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1. Walk or ride at least part of the way to work.

If you can cycle or walk (or even run) to work, this can be an excellent way to fit more activity into your day – and you’ll arrive feeling fresh and energised, with a clear mind. Not everyone lives close enough for this to be a realistic option, but you can still find ways to make at least part of your trip more active. If you use public transport get off a stop or two early and walk the rest of the way or if you drive see if you could park a bit further away. If it’s a big car park try parking at the far side. Experiment and try a few different things to see what works for you.

2. Take the stairs.

Take the stairs rather than using the lift. If it’s too much for you then think about taking the left part of the way and walking just one or two floors. If you struggle to walk up the stairs then how about taking the lift a floor or two higher and then walking down the stairs.

3. Use every opportunity you have to get up from your desk

Pretend it’s the ‘80s – instead of emailing your colleague walk across to their desk and have a chat with them face to face (weird, I know!).

Encourage people to have standing or walking meetings rather than sitting around a table. Research shows standing meetings can also be a good way to increase efficiency, making sure things don’t drag on unnecessarily. For smaller groups or one-on-ones, a walking meeting can be a great way to get things done while getting in a little physical activity. For smaller groups a walking meeting can also help reduce tensions and encourage more creativity and free-flowing conversation. And if the meeting goes really badly, you can just speed up, walk away and never come back.

4. Try a standing desk.

If it’s possible in your office, standing up to work can be a great choice. It’s needs to be easily adjustable so you can alternate between sitting and standing throughout the day. Getting a standing desk or similar adjustment can be covered by the Access to Work grant.

5. Turn waiting time into moving time.

Waiting for the printer, or the kettle to boil? Take the opportunity to do some stretching exercises. Check out the NASS Back to Action exercise programme for some suggestions. Alternatively, ask your physiotherapist to show you some suitable exercises.

6. Set a reminder to move.

It’s easy to get engrossed in your work and forget to move until you realise you are feeling stiff and in pain. Some wearable health devices will vibrate when you haven’t moved for a while or you can set reminders to remind you to take a break. Then you could get up and go for a short walk around the building or up and down the stairs. You don’t have to go for long. Not only will it get you moving, it will help clear your head, so you go back to work feeling a bit more refreshed.

7. Get moving at lunch time.

Do take a lunch break and try not to take your break at your desk. Having a break during the day is beneficial for your mental health and well-being, and it’s a good opportunity to get active. Instead of eating at your desk or sitting down in the kitchen area for your whole lunch break, make a point to get up and move for at least part of the time. Maybe go outside for a walk and enjoy the change of scenery.

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