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    Musculoskeletal Health Australia
    07/Jul/2022
    Health InformationMHA Blogs

    What is axial spondyloarthritis?

    It’s definitely a mouthful, but what is axial spondyloarthritis?

    Axial spondyloarthritis (axSpA) is the umbrella term for two different types of inflammatory arthritis that affect the spine: ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA)

    Ankylosing spondylitis (AS) affects the spine and the joints that connect the lower spine to the pelvis (sacroiliac joints). These changes are visible on x-ray.

    In non-radiographic axial spondyloarthritis (nr-axSpA), these changes aren’t yet visible on an x-ray but may be seen on an MRI. For some people, nr-axSpA will never progress to the stage where joint changes are seen on x-ray. For others, these changes will eventually be seen on an x-ray, and their diagnosis will be changed to AS.

    These conditions cause pain, stiffness and reduced mobility in your spine. They can also cause symptoms including inflammation of tendons and ligaments, inflammatory bowel disease, psoriasis and inflammation of the eye.

    The good news is that axSpA can be treated effectively with medicine and self-care.

    Q. What are the signs that I may have axial spondyloarthritis?
    A. The signs or symptoms of axial spondyloarthritis vary from person to person. The most common symptoms are pain and stiffness in the back, often the lower back and into the buttocks that:

    • comes on gradually over weeks or months
    • is worse in the second half of the night and wakes you up
    • is worse first thing in the morning, with early morning stiffness that lasts 30 minutes or more
    • is worse after rest and feels better after activity and exercise
    • has been present for 3 months or more
    • may involve pain deep in the buttock that can swap from one side to the other over time, especially in the early stages (doctors call this ‘alternating buttock pain’).

    Other symptoms can include:

    • fatigue (extreme tiredness)
    • inflammation and pain in tendons (which connect muscles to bones) and ligaments (which connect bones to each other), which you may feel as pain in the front of your chest, back of your heel or underneath your foot
    • arthritis in one or more of your peripheral joints – such as the joints in your hands, feet, arms or legs
    • inflammation in your eye (uveitis)
    • inflammatory bowel disease
    • psoriasis
    • feeling feverish and having night sweats
    • losing your appetite and losing weight.

    Symptoms may change from day to day. At times your symptoms (e.g. pain, fatigue, inflammation) can become more intense. This is a flare. Flares are unpredictable and can seem to come out of nowhere.

    Q. What causes axial spondyloarthritis?
    A. Axial spondyloarthritis is an autoimmune disease. That means it occurs as a result of a faulty immune system.

    Instead of identifying foreign bodies (e.g. bacteria, viruses) and attacking them to keep you healthy, your immune system mistakenly targets healthy tissue in and around your joints, causing inflammation and pain.

    We don’t know why this happens. Genes are thought to play a role. You’re more likely to get axSpA if you have a history of it in your family. Most people with axSpA have the gene called HLA-B27; however, this gene can also be found in people who don’t have axSpA.

    Since this gene doesn’t automatically lead to the development of axSpA, other factors are thought to be involved.

    We used to think axSpA affected more men than women, but recent research suggests men and women are affected relatively equally.

    Q. How do I know if I have axial spondyloarthritis?
    A. If you have ongoing back pain and stiffness or other symptoms of axSpA, it’s essential that you see your GP. Getting a diagnosis as soon as possible means that treatment can start quickly. This will give you the best possible outcomes.

    No one test can diagnose axSpA, so your doctor will use a combination of tests to confirm your diagnosis. They may include:

    • Your medical history. Your doctor will ask about your symptoms, family history and other health issues.
    • A physical examination to assess joint tenderness, flexibility, and stiffness.
    • Blood tests to check for inflammation associated with axSpA.
    • Genetic testing to look for the HLA-B27 gene, which is present in most people with axSpA.
    • Scans such as an x-ray and MRI (magnetic resonance imaging) to look for joint inflammation and damage.

    Your GP will refer you to a rheumatologist if they think you have, or have diagnosed you with axSpA. Rheumatologists are doctors who specialise in diagnosing and treating problems with joints, muscles, bones and the immune system.

    Q. How is axial spondyloarthritis treated?
    A. Your rheumatologist will recommend and prescribe medicines for your axSpA.

    The two main types of medicines used to treat axSpA and help manage its symptoms are NSAIDs and targeted therapies:

    • Non-steroidal anti-inflammatory drugs (NSAIDs) are nearly always used as the first medicine to treat the pain, inflammation and stiffness of axSpA unless there’s a reason that you can’t take them. Research shows that NSAIDs are very effective in managing symptoms of axSpA. Some people may need to take them regularly, while others will only take them as needed. This will depend on your symptoms and how you respond to the NSAID. Your rheumatologist will talk with you about how often you should take NSAIDs and the long-term benefits and risks of using them. There are many different types and brands; some are available over-the-counter, while others are only available on prescription.
    • Targeted therapies are medicines that ‘target’ specific proteins in the immune system that produce inflammation. They include biological disease-modifying anti-rheumatic drugs (biologics), biosimilars and targeted synthetic disease-modifying anti-rheumatic drugs. These targeted treatments have dramatically improved the quality of life for people with axSpA who need more than NSAIDs to manage their condition. They work to control your immune system in a targeted way, slowing down the attack on your spine and joints. Your rheumatologist will talk to you about using these medicines if you need more than NSAIDs to manage your axSpA or you’re unable to take NSAIDs.

    Q. What can I do to control my symptoms?
    A. As well as taking your medicines as prescribed, there are things you can do.

    • Learn about your condition. Understanding axSpA allows you to make informed decisions about your healthcare and actively manage it.
    • Exercise regularly. This is the most important thing you can do to help manage your axSpA. Exercise can improve symptoms including stiffness, pain, fatigue, breathing capacity and posture. It helps increase your flexibility and range of movement, so it’s easier to do many everyday tasks. As soon as possible after receiving your diagnosis, you should ideally begin a personalised exercise program developed by a physio or exercise physiologist (EP) and aim to do some exercise every day. Being active is also essential for your overall health and wellbeing. It helps keep your muscles, bones and joints strong so that you can keep moving. It reduces your risk of developing other conditions such as heart disease, osteoporosis, diabetes and some forms of cancer. It boosts your mood, benefits your mental health, helps with weight control and improves sleep.
    • Manage your weight. Being overweight or obese increases inflammation throughout your body. This inflammation affects not only your joints but also blood vessels and insulin levels. This can increase your risk of chronic health conditions such as heart disease and diabetes. Losing weight is an important thing you can do to reduce your risk of these conditions and to reduce your axSpA symptoms. Being overweight or obese also limits the effectiveness of some medicines used to treat axSpA. Losing weight can be challenging, so if you need to lose weight or advice on healthy eating, talk with your doctor or dietitian.
    • Learn ways to manage your pain. Pain is the most common symptom of axSpA, so learning to manage it effectively is crucial. Read our A-Z guide for managing pain for more information.
    • Work closely with your healthcare team. The best way to live well with axSpA is by working closely with the people in your healthcare team (e.g. GP, rheumatologist, physio). Keep them informed about how you’re doing and if you’ve experienced any changes in your symptoms or tried new medicines, complementary therapies, supplements or other treatments.
    • Use aids and equipment. Supports such as long-handled shoehorns, reachers and canes can reduce joint strain and make life easier, especially if your condition has reduced your flexibility and mobility. An occupational therapist can advise you on aids, equipment and home modifications. You can also check out our range of aids in our online shop.
    • Sleep well. Not getting enough quality sleep can worsen your symptoms; however, getting a good night’s sleep when you have axSpA and chronic pain can be difficult. If you’re having problems sleeping, talk with your doctor about ways you can address this.
    • Manage stress. Stress can also aggravate your symptoms, so learning to deal with stress is extremely helpful. Things you can do to manage stress include planning your day and setting priorities, using relaxation techniques such as going for a walk, getting a massage or listening to music, and, where possible, avoiding people and situations that cause you stress.
    • Practise mindfulness. Regularly practising mindfulness meditation can improve your mood, relieve stress, improve sleep, improve mental health and reduce pain.
    • Eat a healthy, balanced diet. While there’s no specific diet for axSpA, it’s important to have a healthy, balanced diet to maintain general health and prevent weight gain and other health problems, such as diabetes and heart disease.
    • Quit smoking. Smoking cigarettes is not only bad for your general health but also negatively affects your bone health and increases inflammation.
    • Seek support from others. You might find it helpful to contact Ankylosing Spondylitis Australia or the Ankylosing Spondylitis Group of Victoria and speak to others who have axSpA and know what you’re going through.

    Q. Are there any complications I should be aware of?
    A. Some people living with axSpA develop an eye problem called uveitis, which causes a painful red eye with blurred vision and sensitivity to light.

    If you develop eye symptoms, you’ll need to quickly get your eye checked and treated by an ophthalmologist. Treatment is usually with prescription eye drops, which reduce the chance of permanent eye damage.

    By understanding this risk and knowing what signs to be alert for, you can reduce the risk of damage to your eyes.
    Ask your GP or rheumatologist what you should do if you develop any eye symptoms.

    Q. What about surgery?
    A. Most people with axSpA can manage their condition using a combination of exercise, medicines and self-care.

    However, surgery may be considered in some cases if treatments haven’t provided relief from symptoms or if you have a spinal fracture or dislocation. Surgery that may be considered includes:

    • hip arthroplasty (replacement) surgery if you have severe and persistent hip pain
    • cervical fusion, where bones in the cervical (upper) spine are fused together to treat a fracture or dislocation
    • wedge osteotomy removes a wedge-shaped piece of bone from a vertebra to allow the spine to be realigned.

    If your doctor thinks surgery might be an option, they’ll refer you to an orthopaedic surgeon. Together, you can discuss the benefits and risks of surgery and decide if it’s right for you. If you’re unsure about surgery or don’t feel comfortable with the information from the surgeon, ask your doctor to refer you to another surgeon for a second opinion.

    Contact our free national Help Line

    Call our nurses if you have questions about managing your pain, musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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    Musculoskeletal Health Australia
    16/Jun/2022
    Health InformationMHA Blogs

    Healthy meals on a budget

    Times are tough; there’s no denying that. The rising costs of everything (hello, $10 iceberg lettuce 😭) are putting the household budget under significant pressure. And this is causing many of us to feel anxious.

    But we can do many practical things to relieve some of this stress. Let’s start in the kitchen with our tips for enjoying tasty, healthy meals and snacks that won’t cost an arm and a leg.

    Make a meal plan – and stick to it

    Before hitting the shops, plan your meals and snacks for the week. Check the fridge and pantry to see what ingredients you already have, and write a list of those you need. Writing a list is essential because, even if you’re not in pain or dealing with brain fog, it’s easy to forget things, buy the wrong quantities or items you don’t need in the heat of the moment. (Step away from the chips Lisa 😁). And if, like me, you hate shopping and really want to avoid crowds and germs, getting the shopping done quickly and efficiently is a must. With the steep price of petrol, it also makes sense to keep the trips to the shops to a minimum. So plan, plan, plan! Eatforhealth.gov.au has some helpful information on meal planning, including sample mean plans. There are also lots of meal planning apps you can download from Google Play or the App Store. They conveniently place your meal plan and shopping list on your phone, so no more forgotten shopping lists!

    Read the nutrition panel

    It’s a good habit to get into so you can track the amount of energy (kilojoules), fat, salt, sugar etc., in your foods. It’s also helpful when comparing different brands of the same product.

    Swap some meat dishes for vegetarian or vegan meals

    Research has found that vegan and vegetarian diets cost less than a diet that includes meat. You don’t have to go all-out vego; simply swap some of your meat dishes for plant-based meals. They’re tasty, healthy and cheap. Healthy vegetarian protein sources include tofu, chickpeas, beans, quinoa, lentils, eggs and nuts. If you need help, there are many websites with interesting and tasty vegetarian and vegan recipes.

    Note: You’ve probably noticed the multitude of plant-based ‘meats’ crowding the shelves in your supermarket, often alongside actual meat products. They’ve been developed to look and taste like meat and can be a good alternative to meat, especially if your family aren’t keen on giving tofu a go 😉! Just make sure you read the nutritional panel carefully before buying these products, as some have high levels of salt, saturated fat and other additives. The Cleveland Clinic has an interesting article to help you know what to look for when buying faux meats.

    Choose generic, home brand and no-name products

    They’re generally cheaper and are often exactly the same as the name brand, just without the fancy packaging.

    Prepare some meals in advance

    When you’ve got some free time, make extra meals that you can freeze and use when necessary. That way, when you’re exhausted, having a flare, or just can’t be bothered cooking, you’ll have some meals you know are healthy. And you won’t have to resort to takeaway foods or store-bought frozen meals, which can be costly and are often high in fat, salt and/or sugar.

    Buy local and in-season fruit and veg

    They’re generally more nutritious, fresher and more cost-effective. The Australian Farmers’ Markets Association has a tool to help you find your local farmers’ market, and Sustainable Table has a handy seasonal produce guide.

    Buy so-called ‘ugly’ produce

    These fruits and vegetables are cheaper and taste fine. Who cares if your carrot has two ‘legs’ or your apple has a spot? At the end of the day, they’re perfectly healthy and packed with all the usual nutrients. They just don’t look shiny and new, but who does these days 😉? You can get imperfect produce at many supermarkets and food subscription services.

    Read the unit price when comparing products

    This will enable you to see the price difference regardless of brand or quantity, and you can work out which provides the best value for money. Unit pricing works by using a standard measurement across all products of the same type.

    So, for example, if you compared yoghurt A with yoghurt B:

    • yoghurt A costs $6.40 for 1kg, so its unit price is $0.64 per 100g
    • yoghurt B costs $2.30 for 200g, so its unit price is $1.15 per 100g.

    That makes yoghurt A cheaper per 100g.

    Fortunately, you don’t have to do the mental gymnastics to work this out for yourself. The unit price is generally provided on the shelf label and online. Phew! Shopping is hard enough!

    Grow your own

    Over the past few years, many of us have discovered the joy of gardening. So why not grow some of your own produce? Whether on a small scale with a few pots of herbs on your balcony or larger scale vegie patch and fruit trees in your backyard, you can experience the pleasure and reap the rewards of growing some of your own foods. Nothing tastes sweeter than the food you’ve nurtured, grown and picked yourself 💚.

    Use frozen and canned fruit and vegetables

    They’re still healthy and usually cheaper than produce that’s not in season. They’ll also keep longer. Just make sure you read the ingredients list and nutrition panel. Canned foods may have added salt or sugar. So for vegies, look for ‘no added salt’ on the label, and choose fruits in natural juice with no added sugar rather than canned in syrup.

    Shop around and do your research

    Just because you’ve always shopped at a particular place doesn’t mean you always have to shop there. Visit the local farmer’s markets, keep an eye on catalogues and join online groups with other savvy shoppers. That way, you’ll always know who’s providing the best value for money for your groceries.

    Buy in bulk items you use regularly and have a long shelf life

    This includes things like rice, dried/canned legumes and pasta. And the best time to buy them is when they’re on sale. But please don’t go crazy and start hoarding or buying too much 😐. Bulk buying to save money is different to the panic buying we’ve seen during the pandemic. If we all shop for only the things we need, there’ll be plenty for everyone.

    Reduce your kitchen waste

    Shopping with a list will help, and only buy what you need. Take note of the foods you often throw out because they’ve become a mysterious, furry blob in your fridge. Avoid buying that item, or buy less of it when you shop. Look for ways to use food that’s becoming slightly less than fresh but is still good. Soups are a great way to use the last of the vegies in your fridge crisper. Visit the Foodwise website for tips to help you reduce waste.

    Getting takeaway

    Let’s face it, there’ll be times when you really, really want takeaway food. It’s quick, easy and delicious 😋. As long as it’s an occasional thing and you eat it in moderation, it shouldn’t have too great an impact on your health or wallet. Here are some tips from Health and Wellbeing Queensland to help you make the healthiest choices when it comes to takeaway food.

    Finally, don’t shop when you’re hungry

    It’s an easy way to end up with lots of things in your trolley that weren’t on your shopping list. This can blow your budget and plans for healthy eating right out of the water. So shop after you’ve eaten or munch on some fruit or handful of nuts before you even consider walking into the bright lights and air-conditioned aisles of your local shopping centre. Your budget will thank you for it.

    Contact our free national Helpline

    Call our friendly team if you have questions about managing your pain, musculoskeletal condition, treatment options, mental health issues, telehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@muscha.org) or via Messenger.

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    Musculoskeletal Health Australia
    19/May/2022
    MSK Kids Blogs

    Thalia’s Story

    Hi! I’m Thalia. I’m 17, and I’m currently completing my VCE. In my spare time I enjoy reading, music, dance, and getting involved with my local community.

    I have also lived with not one, but two musculoskeletal conditions. At ten months old, I had a severe bone infection in my left hip. I was lucky to survive the infection, but it significantly damaged my hip joint. Over time, this damage developed into severe osteoarthritis. By age six, I was unable to sit on the floor and by age eight I had the hip of an average 75 year old.

    My arthritis was getting worse quickly. Despite several surgeries, I ended up in a wheelchair because of a disease that most people didn’t think kids could get.

    Now, if you saw a child in a wheelchair who looked completely fine, it would probably raise some questions, right? Well, it certainly did around me. I can’t count the number of times someone has asked me (usually an adult) “now what have you done to yourself?”. When I told people that I had osteoarthritis, many of them didn’t believe me. So, at the ripe old age of eight, I decided to try and change the perception of arthritis and other similar conditions as an “old people’s disease”.

    That’s how I discovered what was at that point called Arthritis Victoria, now Musculoskeletal Australia or MSK. I set up a cake stall at my local farmers’ market and raised $722. I spread the message, within my tiny country town, that kids get arthritis too. And over the next few years, I continued to raise awareness and funds for MSK.

    In 2017, at the age of twelve, I had a total hip replacement. I recovered quickly, and two months later I was living life like a completely normal teenager. I could walk, run, climb. I even did PE at school. For the first time in years, I was like any other kid. If you end the story here, I live happily ever after… but unfortunately that’s not quite how things turned out.

    In early 2018, 8 months after my hip replacement, the pain was back. What I had previously felt in my hip was now all over my body. Muscles were weak and achy, joints felt like they were grating together and even my skin was on fire. People couldn’t touch me without causing me pain. I went back on medication and had countless tests to see why I was in pain, but there was no physical cause.

    Eventually, I received a diagnosis: fibromyalgia. The most likely reason is that my brain is so used to being in pain, it thinks it still is; but because of the nature of this illness, we will never know for certain.

    Growing up with a musculoskeletal condition is incredibly lonely. I still have not ever met someone my age with osteoarthritis or a hip replacement. I was the only person in my primary school in a wheelchair and it was hard for teachers and students at my primary school to understand my condition. Whilst this is not as prevalent at high school, it is still something I face every day.

    MSK has provided me with a community. Through MSK I have met other people like me, people who have had their conditions from a young age, who know exactly what it feels like to wake up every morning not knowing how much pain you’ll be in, or how much function you’ll have. Having this family of people who get it is crucial; it means that I’m not alone anymore.

    More recently, I’ve become a young ambassador for MSK’s Teen Talk platform. Teen Talk is an online chat group for those aged between 13-20 who live with a musculoskeletal or chronic pain condition. Teen Talk is a place to connect with other kids who understand what you’re going through. With chill-out spaces, memes, places to chat health and even a pets chat, Teen Talk is an amazing platform for everyone looking for community and support with their MSK journey. I hope to see you there!

    In my future, I have no idea what I will be. I am interested in so many fields including psychology, fashion design, the arts, STEM and many, many more. I do know, however, that whatever the future holds for me, I will strive to make a difference in this world, for myself and the other children like me. I want to tell the world my story, to raise awareness for all of the kids out there who live without recognition of the trials they face. I will continue to spread the message that “kids get arthritis too”. And I will expand this message, to say “kids get a whole range of musculoskeletal conditions too”.

    CONTINUE READING
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    Musculoskeletal Health Australia
    13/Apr/2022
    Health InformationMSK articles

    Bedtime routines – not just for kids

    Do you get to the end of your busy, tiring day, drag yourself to bed and then have trouble falling asleep? Or staying asleep?

    If so, you’re not alone. It’s a common problem, especially for people with musculoskeletal conditions or chronic pain. The Australian Institute of Health and Welfare (AIHW) reports that about two-thirds of Australians aged 18 and over with chronic conditions such as arthritis, diabetes and mental health issues report at least 1 sleep difficulty or problem.(1)  And so while it’s probably no surprise to you that poor sleep affects your pain levels and quality of life, did you know it can put you at risk of developing other chronic conditions, including high blood pressure, diabetes and heart disease? (2)

    That’s why it’s important to develop a healthy and consistent bedtime routine that allows your body and mind time to wind down and relax so that you can sleep well.

    What are the elements of a bedtime routine?

    First, a good bedtime routine needs time. Rushing is counterproductive and can lead to more stress and anxiety right before you hop into bed. So give yourself enough time, at least 30 minutes each night. Also, allow time for your new routine to stick. We’re creatures of habit, but when we create new routines, we have to give them time to become second nature.

    Next, your bedtime routine should involve things that you enjoy, help calm your body and mind, and let your body know it’s time for sleep.

    Here are some suggestions for things you might include in your routine:

    • Set a time for going to bed, and stick to it as much as possible. When you have a consistent sleep schedule, your body naturally adjusts and begins to feel tired at the right time each day, making it easier to fall asleep.
    • Don’t use technology during your wind-down time. It’s easy to lose track of time while reading emails, checking social media or watching the latest TV series. The next thing you know, you’re still awake at midnight. So put the technology away.
    • Write it down and get it out of your head. Put pen to paper and write down your worries, concerns, and things you need to do the next day. Basically, anything playing on your mind and interfering with your ability to relax and sleep. Don’t do this right before you hop into bed, as they’ll still be on your mind. Instead, do it a few hours before bedtime, and then put it away.
    • Avoid caffeine, alcohol, nicotine and big meals close to bedtime. They can affect your ability to fall asleep and the quality of your sleep. Instead, drink water, herbal tea or non-caffeinated drinks. And if you’re hungry, eat a light snack, for example, a piece of fruit, some yoghurt or a small handful of nuts.
    • Adjust the temperature. Your body’s core temperature needs to drop a few degrees for you to fall asleep. So for your bedroom temperature, it’s best to aim for cooler (but not cold) rather than warm. A helpful tip from the American Academy of Sleep Medicine is to think of your bedroom as a cave: it should be cool, quiet, and dark.
    • Have a warm shower or bath an hour or two before bed. This is also about achieving optimum body temperature for good sleep. The shower or bath will initially warm your body, but then as the water evaporates from your skin, you’ll quickly cool down. The warm water also stimulates blood flow from your core to your hands and feet, lowering your body temperature.
    • Don’t forget your teeth! While it doesn’t directly relate to sleep quality, it’s part of the winding down process at the end of your day.
    • Take your regular medicines (if required).
    • Avoid strenuous exercise before bedtime. It raises your temperature and heart rate, making it difficult to fall asleep. Instead, save these kinds of activities for your morning or afternoon.
    • Do something you enjoy – for example, read a book, listen to music, talk to your partner/kids/pet. These enjoyable activities create a feeling of calm. They can also improve your mood and help you manage stress and anxiety.
    • Try other ways to relax – such as gentle yoga, meditation, stretching, deep breathing and progressive muscle relaxation.
    • Have sex! Research suggests that having sex improves sleep, whether you’re alone or with a partner. Orgasm releases several hormones, including oxytocin, which when elevated as a result of sexual intercourse improves sleep quality. Cuddling may also help you fall asleep, as it can make you feel calm and comforted.
    • Prep for the next day. Take the stress out of your morning routine by doing some prep the night before. Sort out your lunch, outfit, kid’s homework etc, so you can go to bed feeling confident your morning will start well.

    These simple suggestions to help you wind down at the end of your day can help you relax and sleep better. And in the end, we all want to sleep well and feel as refreshed as possible when we wake up. So why not give some of these things a go? You’ve got nothing to lose and so much to gain.

    Contact our free national Help Line

    Call our nurses if you have questions about managing your pain, musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

    More to explore

    Reference

    (1-2) Sleep problems as a risk factor for chronic conditions 
    Australian Institute of Health and Welfare (AIHW)

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    Musculoskeletal Health Australia
    28/Oct/2021
    MSK articlesMSK Kids Blogs

    Horses, farming and arthritis: Caitlin’s story

    Photo by AUSVEG

    Caitlin, a fifth-generation farmer from the northwest coast of Tasmania and Australian Apprentice of the Year 2020, shares her story about living with arthritis.

    I was diagnosed with arthritis when I was 12, turning 13, and in grade 7.

    I remember my first attack very well. We were on the Spirit of Tasmania heading over to Werribee for the 2011 Interschool Nationals (Equestrian) and on the boat I had a really sore hip. By the following night, the pain had become unbearable, so mum took me to the hospital. The staff took x-rays but couldn’t find what was causing my pain.

    I was then transferred to the Royal Children’s Hospital, where I spent the next three days. After a series of ultrasounds and an MRI, they found a heap of fluid on my hip and diagnosed post-viral arthritis. Even with this diagnosis, I went on to compete and hobble around on crutches at Nationals!

    When I got home to Tasmania, I went to my GP and was referred to a rheumatologist. It was then I was diagnosed with severe idiopathic rheumatoid arthritis. Then the journey began…???

    Has your condition or living with pain impacted your social life, work, friends etc?

    It had a huge impact on the rest of my high school years. I took prednisone daily for two or so years, which made me extremely puffy in the face. The people who knew what was going on were kind, but there were also some unkind people. It affected my confidence, I became depressed, moody and I didn’t even want to ride my ponies for a while.

    Also, because I usually competed every weekend and rode a lot, I never really felt that I belonged with a particular group at school. And so, towards the end of school, I was quite happy to do homework in the art rooms at recess and lunch. I had some friends, but none who understood what it was like for me, or my lifestyle with the horses and farm, except for my best friend, who lived an hour away.

    Since grade 12, life has been on the up and up. I’ve found my ‘people’ by developing greater friendships through horses, joining Rural Youth and getting involved with local agricultural networks where I fit in with like-minded people. Sometimes I’m exhausted and not up to some activities, but I know how to balance my life to keep myself healthy (most of the time! ?) and to be honest with how I’m feeling and when I need to take a break.

    Work-wise, working for myself and my family is very handy as I can be more flexible around workload and how I do things. My family is super supportive and will help me in any way they can if I get sick, have an attack or need to go to appointments.

    What’s life like living with arthritis?

    Every day is different! When I was younger and trialling a lot of different medications, it was a rollercoaster to say the least! I would be nauseous all the time if I was on methotrexate, and tired to the point where I would fall asleep not long after getting home from school. Touch wood, it seems to be somewhat under control now.

    I’ve found Actemra (tocilizumab) to be the best medication for me so far. I have an infusion at the hospital once a month. However, I’m starting a new medication next week due to the worldwide shortage of Actemra as they’ve been using it to treat people with COVID. So we’ll see how that goes, as it requires me to go back on to methotrexate.

    I could’ve opted for a different medication, such as a daily tablet or self-injection, but I wasn’t a fan of those options. I self-injected twice weekly for a few years, and in the end, I couldn’t mentally do it anymore. I’d get worked up about having to do it, and I found the medication wasn’t working as well. With my busy lifestyle, sitting down in the hospital for a couple of hours once a month actually suits me quite well!

    How does your condition impact working and running a farm?

    Hydraulics were invented for a reason! Don’t get me wrong, it’s still a very physical job, but I enjoy it as it helps me stay fit and active.

    When I’m fitter, I find I don’t get as sore, or I’m at least able to handle more exercise. I also find it helps me with my mental health too. I’m lucky to be able to run two of my own businesses. One through coaching dressage and beginner riders and creating freestyle music. The other is the farm with my partner that we lease from my grandparents. I find that long days in the tractor and very repetitive movements make me stiff and sore, but I’m sure many others find that as well.

    Does horse riding help?

    It helps in the fact that it takes my mind off the pain while I’m riding. I do feel it afterwards though! On the days I’m in so much pain that I struggle to walk, I can ride, and the horse can become my legs for an hour. When I was younger, I was graded as a para-athlete due to the effects of my arthritis. This wasn’t a bad thing as it allowed me to make so many connections with other para-athletes. I realised that I didn’t have it bad at all, and those I felt had it worse than me were often more determined and more able than some able-bodied riders I know! The only barrier is our mind and what we think we can do. So that really allowed me to push myself to be a better rider and then pass that on when teaching children or adults with learning or physical disabilities.

    How important are strong connections – e.g. family, friends, partner – when you have arthritis and chronic pain?

    Having a supportive team around you is essential. I’m lucky to have a very supportive family, and my partner Owen is amazing.

    There can be days when I need help with basic things like getting undressed, getting into the shower and putting my hair up or the like. For the most part, I’m totally independent, but I know that when I am going through an attack, it won’t be pleasant, and I’ll need to rely on that support.

    I also have Hashimoto’s disease and fibromyalgia, so it all hits my immune system hard. From restless legs to feeling pain for the smallest of things, it can be really frustrating. So to have people to comfort you when it gets too much is really important. Sometimes we all need a hug and to be told it’s all ok to get us through the day. ?

    My best friend for the last 10 years has seen me go through everything, from being really sick to the healthiest I’ve been and everything in between. We’ve travelled overseas and look forward to more adventures, hopefully soon.

    I first told my story publicly on Landline earlier this year. I had messages from people from all over thanking me for sharing my story and inspiring them to go for their dreams too. So to know that my story has helped others makes me so happy!

    Do you have any tips for other people who have arthritis or other musculoskeletal conditions?

    The biggest piece of advice that I can give is finding what makes you happy. When I’m focused, the rest seems to blur out. Get to know your body and what you can handle, find people in similar situations and ask them as many questions as you can, and then be that person for someone else. We are all in this together and shouldn’t feel alone! There’s no reason we can’t do the things we wish to do most in today’s world.

    Contact our free national Help Line

    If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services be sure to call our nurses. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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    Musculoskeletal Health Australia
    15/Sep/2021
    Health InformationMSK articles

    Specialists and you

    This is the third in our series exploring the different groups of health professionals and therapists who’ll help you live well with a musculoskeletal condition.

    Managing a chronic musculoskeletal condition – or multiple conditions – can be complicated. To help you get the best health outcomes and maintain (or improve) your quality of life, you’ll probably see a variety of different health professionals and therapists.

    Who you see and how often will depend on your condition/s, symptoms and how they affect your life.

    What is a specialist in healthcare?

    A specialist is exactly what it sounds like. A person – in this case, a medical doctor – who has undergone additional training to become a ‘specialist’ or an expert in a specific area of medicine.

    Specialists work in clinics and in hospitals, both in the private and public health systems. To see a specialist, you’ll need a letter of referral from your general practitioner (GP) or another specialist doctor.

    As far as musculoskeletal conditions go, the most common specialist that people will see is a rheumatologist. But many other specialists help people manage their condition. Let’s explore each of them.

    Whether you see any of these specialists will depend on your condition, symptoms, and their effect on your overall health and wellbeing.

    Seeing a specialist

    To see a specialist, you’ll need a referral letter from your GP or another specialist doctor. This will include information about your symptoms and test results.

    You can visit a specialist in a clinic or a hospital. Depending on various factors such as where you live, the number of specialists available, the urgency of your situation, and if there’s a waiting list, you may see a specialist quickly, or you may have to wait.

    Talk with your GP about the costs involved when discussing your referral. Medicare will cover part of the fee to see a specialist but not all of it. Specialist fees can be high, and depending on your circumstances and eligibility, this may influence whether you see a specialist at a bulk-billing hospital or in a private clinic. If you have private health insurance, this may also cover some of your costs. However, it’s essential to ask about fees and your choices before seeing a specialist.

    The Better Health Channel suggests asking the following.

    Does the specialist:

    • work within the public or private health system?
    • bulk-bill via the Medical Benefits Scheme (MBS)?
    • require gap payments?
    • have a payment plan?
    • accept my private health cover?

    Before your first appointment

    When making your appointment, ask what information or test results you need to bring with you. The specialist may already have access to all or some of this information via your health records, but it’s a good idea to double-check.

    You can also be proactive and create a file containing all of your results, records, medications and other treatments. Take it with you when you visit the specialist. That way there’ll be no potential delay in your assessment and treatment if your specialist can’t access some of your information. And make sure you include your referral letter.

    Write down a list of questions about the things you want to know. This may be about diagnosis, treatment options, the benefits and risks of different treatments, costs, things you can do to manage better etc. Put them in order, with the most important questions at the top of the list. That way, if you run out of time, they’ll have been answered first.

    Make sure you have an up-to-date list of your meds to take with you. This can be extremely helpful if your specialist hasn’t been able to access this information through online channels. You may want to use an app to keep track of your medicines so you always have this information with you. The MedicineWise app from the National Prescribing Service is free to download. You can create a list of your medicines by scanning their barcodes, set reminders for when to take medicines, store your test results and much more.

    Consider taking a family member or friend with you. Healthcare appointments can be stressful, and having an extra set of eyes and ears can help you take it all in. They can also provide emotional support before, during and after your appointment.

    During your appointment

    The specialist will ask you about your symptoms and examine you.

    Be open and honest when answering their questions. The specialist needs all the relevant information about you and your health to have an accurate idea of what’s happening and how best to treat you. They’ll need information about your medical history, other health conditions, treatments (both conventional and complementary) and lifestyle factors (e.g., how often you exercise, if you smoke, your diet etc.).

    You may have one or more visits to your specialist before they have all the information they need. They may also send you for further tests. Once they have all the necessary information, they’ll explain your condition to you and what treatment they think you should have.

    If you don’t understand what they’re suggesting, or you need more information, ask the specialist to explain further. Don’t be embarrassed to ask for this. Musculoskeletal conditions and treatments are complicated, so the more you understand, the better. And don’t be afraid to ask them to write things down for you.

    After your appointment

    Follow the treatment plan that you and your specialist have agreed upon. If they’ve requested you have further tests or book more appointments, make sure you do this as soon as possible.

    If you’ve been prescribed medication, take it as instructed. If you can’t remember, or you’re not sure how to take it, talk with your pharmacist or call your specialist.

    And for information and support between visits to your healthcare team, call our national Help Line on 1800 263 265 weekdays.

    Contact our free national Help Line

    If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, or accessing services be sure to call our friendly team. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@muscha.org) or via Messenger.

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    Musculoskeletal Health Australia
    04/Aug/2021
    MSK articlesMSK Kids Blogs

    Diagnosed with arthritis in grade 4

    Written by Jenny Hill

    Hi, my name’s Jennifer, but I also answer to Jen, Jenny, Jen Jen and for many years during primary school – ‘Skippy’ (as in The Bush Kangaroo!). I’m 39 years old and was diagnosed with juvenile arthritis (JA) when I was in grade 4.

    My memories of my initial symptoms, diagnosis and treatments are a little hazy, given it was 30 years ago, but my mum has provided a timeline of my journey and our experiences. I suggest you read her blog before mine.

    My first experience of the pain that I’d later identify as JA followed a routine sprain of my left ankle. It didn’t seem to heal properly, leaving me with permanent swelling, immobility and terrible pain. I quickly went from playing netball and water skiing to crawling to get around the house.

    Despite seeing an array of GPs and other health professionals, there was no explanation as to why my joints were so painful.

    When I was finally diagnosed with juvenile arthritis, I felt some relief amidst the initial confusion and shock. There was something wrong; it wasn’t in my head, it had a name, and there were treatments for it.

    I spent that first year adapting to my new lifestyle.

    During school recesses, I’d sit in a courtyard adjacent to my classroom, observing my friends who found ways to play close by. I read as many books as I could to distract myself from boredom and pain. I took drama classes instead of competing in my beloved netball. I learnt how to style my hair to cover my baldness when my hair fell out. Before I visited the hospital, I focused on the treat of a McDonalds burger rather than the painful examinations. I learnt how to ‘save up’ my strength and pain tolerance for special days such as excursions. When I could walk, I learnt that the only way to try and keep up with others was to re-work my limp (which made me look like a pretty clumsy kangaroo!). I don’t think that I ever believed that this could be permanent. I just took it day by day.

    Looking back on these early years – despite the pain and frustrating cycles of treatments or reactions to medication – I can’t help but think that I was lucky in many ways. During primary school, I didn’t experience bullying. I had a large number of friends who took turns sitting with me when I couldn’t play. My teachers tried hard to understand my diagnosis and were very supportive. Having three siblings meant I was rarely lonely, as there was always at least one of them at home who I could torment from the couch! And I had parents who were 100% on my team, reorganising their lives around me, fighting uphill battles with doctors, sitting up with me on painful nights, and showing me patience – never frustration.

    I eventually had periods of remission that brought a lot of relief but also a lot of anger, frustration and sadness when symptoms reappeared and interrupted my life. I stopped talking about my JA. It was too hard, and I believed no one could understand. Thankfully though, remission followed me into high school!

    I moved onto high school, where I was in classes with a few students from primary school. It was cool having different subjects to study and getting to know new friends. By then, I found it considerably easier to walk distances and even play some netball without too much pain! It was no longer so obvious that I had anything physically wrong with me.

    This made it very difficult for me when I had my weeks or days of flare-ups, when the pain would suddenly and viciously return. This was sometimes due to spending too long on my feet shopping and hanging out with my friends, or for no particular reason at all. When this happened, I grew incredibly self-conscious, angry and embarrassed and the last thing I wanted to do was try to explain myself to new friends.

    I couldn’t even make sense of it myself.

    I tried to hide it from friends, often socially disconnecting, spending lunch alone in the library and wagging P.E classes. I felt quite low during these periods and resorted to denial. I tried to deny the whole situation, even when a friend told me his mum saw an article about my JA experience in New Idea magazine. I flat out denied it (though I think the photos of me in the article gave me away!).

    Thankfully, I was invited to attend camps for young people run by the Arthritis Foundation of Victoria (now Musculoskeletal Australia) around this time. At first, I was hesitant to go. But once I got there, I was amazed to be with people my age going through the same stuff, with the same limitations and experiences. It provided a space to let down my guard, have fun, talk about my arthritis without it being a big deal, and have space to vent and complain about things with people who totally got it.

    There was no point denying my arthritis around these people or that I was feeling pretty low and angry at times…we all did.

    I remember how all the young people had their cortisone shots just before camp so they could participate in the activities. And how at the end of the day, when all our joints were aching, we’d commandeer the spare wheelchairs and motor scooters for a game of wheelie basketball. This peer support didn’t entirely cure how I felt, but it did mark a change in my attitude towards my arthritis and a shift in my social life.

    I was more outspoken to friends about my past experiences and current limitations. I found that most people didn’t have lots of questions anyway. We were teenagers, and everyone was wrapped up in themselves!

    My pain became quite manageable over the next couple of years. I even wore high heels to my middle school formal – medication-free! However, I still struggled with depression at times and eventually left school.

    I went back to school and then to university. I got my Master’s Degree and have spent over 10 years working as a youth worker and in academia.

    Apart from the odd flare-ups here and there, I’ve remained in remission. I’ve enjoyed many travel adventures and weekends at music festivals (often on the edge of the dancefloor with friends who know my physical limitations!). I even went on a solo hike around an island in Japan for a month, camping out in a tent!

    I’ve also developed osteoporosis, but that’s another story.

    As fantastic as it is that there’s growing recognition of the physical toll that JA puts on a young person, it’s essential to consider the psychological and social impact of JA on young people (and on their incredible families). The transition from primary to high school was challenging for me. I believe I would’ve had a much easier time if I’d had access to peer support and targeted mental health support.

    If you’ve enjoyed reading my blog, check out my mum’s blog.

    Jenny Hill

    CONTINUE READING
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    Musculoskeletal Health Australia
    04/Aug/2021
    MSK articlesMSK Kids Blogs

    It wasn’t a sprained ankle

    Our journey of discovery with juvenile arthritis

    Written by Cathy Hill

    Arthritis isn’t something you expect to hear your nine-year-old daughter has, but that’s what we were hearing as Jenny and I sat in the rheumatologist’s office in 1991. We’d gone from one doctor to the next, trying to find out what was wrong with Jenny’s ankle, which we thought she’d sprained, but the swelling wouldn’t go down.

    Jenny enjoyed playing netball and was a very proficient player. However, a few months earlier she’d tripped over a log after playing netball. Her ankle became swollen and wouldn’t improve. The usual treatments of ice, compression, elevation and rest, did nothing to ease what we assumed was a sprained ankle.

    A chiropractor had successfully treated me after I’d had a similar injury, so we took Jenny to see him. After a few sessions with no improvement, he suggested we go to our GP for blood tests, as he felt the problem was ‘something internal’. Our GP refused to listen to what the chiropractor suggested and told Jenny to ‘jump up and down on the trampoline. This upset us, as Jenny had difficulty walking let alone jumping on a trampoline! Our chiropractor then recommended a GP who he felt would listen to us. This GP sent Jenny to have blood tests and then referred Jenny to the rheumatologist we were speaking to now.

    We were shocked to think that a 9-year-old could have arthritis. This doctor assured us that it could be treated and that Jenny could lead a healthy and active life. He started her on Voltaren, which certainly brought down the swelling but gave Jenny stomach pains. The doctor then decided to send Jenny to a paediatric rheumatologist at The Royal Children’s Hospital where they were able to successfully change her medication. After a couple of months Jenny’s condition had improved so much that it was declared that Jenny was in remission and she was able to stop the medication.

    Unfortunately, this improvement was short-lived, and after another fall at netball Jenny’s right ankle swelled up, this time even worse. Jenny wasn’t able to walk on that leg at all, and I would drop her as close to her classroom as possible so that she could virtually crawl into her classroom. Thankfully she had a very good group of friends who stayed with her at playtimes in the courtyard right outside their room. Jenny would crawl inside the house, and I would have to lift her into the bath at night. Because we’d been told that she was in remission, we decided to try another form of treatment, this time a local naturopath who had been recommended to us. That treatment didn’t work, and Jenny’s foot was not only terribly swollen, but was also sticking out at almost a 45-degree angle from where it should have been!

    We didn’t know what to do, so we went back to the GP who originally referred us to the first rheumatologist. He suggested that we try an orthopaedic surgeon who told us that Jenny’s bones in her ankle had fused together, but unfortunately at an unnatural angle. He wanted to be absolutely sure that he was doing the right thing to help Jenny, so he asked us to take her into St Vincent’s Hospital where she would participate in a ‘round table’ of various doctors. The doctors agreed with the orthopaedic surgeon’s first thought that he would manipulate Jenny’s foot under general anaesthetic and put it in a fibreglass cast for 6 weeks. This was done at the beginning of 1992, and thankfully the result was that her foot was at a much more normal angle. However, the foot was still swollen, so it was recommended that we go back to see the rheumatology team at the Children’s.

    So began a series of X-rays and scans, new medication, regular physiotherapy, eye check-ups, and included visits to a lady who specialised in ligament damage, and who treated members of the Australian Ballet as well as AFL footballers. I had to do exercises twice daily with Jenny, which resulted in many arguments. I had returned to full-time teaching at the end of 1991, so it was difficult enough getting four children off to school in the mornings and then getting to my own school, as well as finding the time to do the exercises with a reluctant patient! Jenny’s right leg had lost a lot of muscle tone while in the cast, and together with the fused ankle meant that she was not walking properly. It was imperative that we do those exercises, but at that time it was hard for Jenny to understand that, especially as it caused her pain.

    We’d contacted the Arthritis Foundation of Victoria (now Musculoskeletal Australia) for support, and they told us about the camps they ran for children with arthritis. Jenny’s rheumatologist was very keen for Jenny to attend, as he was sometimes involved with the camps. Before she attended the first camp, he wanted Jenny to have ultrasound-guided cortisone injections in her foot, under a twilight sedative. He assured us that it was routine for the children to have cortisone injections right before the camps so they could get the most out of the camp activities. Over the next few years Jenny was able to participate in three camps, including one in Sydney with children from all over Australia. The camps were extremely beneficial for Jenny, and indeed all the participants. There were children with all different types of arthritis, some in wheelchairs, and they were offered a wide range of activities which they wouldn’t normally be able to participate in, such as scuba diving.

    In 1993, in grade 6, Jenny noticed that when brushing her hair she would have clumps of hair in her brush. She was losing hair in patches. The doctor thought this was probably due to stress. We approached Jenny’s teacher and asked whether she could wear a beanie inside as well as outside, but her teacher said that as they had a policy of no hats inside, it would only serve to draw more attention to her. We could see her reason, so asked our hairdresser whether she thought she could do anything to help. She was able to tie Jenny’s hair back into a ‘half up-half down’ hairstyle, which did a pretty good job of covering the bald patches. Jenny was in a great class with generally very caring kids, so she thankfully didn’t have problems with teasing. Grade 6 also meant school production, and this is where we realised Jenny had a great flair for acting. She committed herself to learning her lines and songs and was cast in one of the lead roles – a little dog called Puddles, who had a ‘wee’ little problem! Looking back now I wonder whether the involvement in the production provided an escape from the arthritis and pain.

    Secondary school had its ups and downs. It involved a new set of teachers and a new bunch of kids, mixed in with some friends from primary school. With a letter from her rheumatologist, Jenny was given permission to wear Doc Marten shoes, which gave her right ankle extra support and allowed for the orthotics that had been made for her at the Children’s. The orthotics were used to absorb shock rather than provide arch support like my own orthotics. With the fused ankle Jenny did walk quite flat-footed, but arch supports wouldn’t have helped. Later on it would affect Jenny’s driving, but eventually she found that certain cars that enabled her to sit forwards over the wheel allowed a better angle for her foot, as the fusion of the ankle meant that there was little movement up and down.

    At secondary school Jenny had her group of friends from primary school as well as other new friends. However, continuing flare-ups meant that she would often go and find a quiet place by herself at school, which affected some of her friendships. At the time we weren’t always aware of how much pain she was in, otherwise we would’ve asked her doctor whether there was anything else Jenny could take for the pain.

    Jenny immersed herself in the music program at school, and we went to several music concerts. She still had a great interest in drama and was enrolled in a local drama school where she took part in several productions. Jenny was able to participate in netball again, although she was confined to the goal third of the court where she became quite a proficient shooter!

    When Jenny was 15, her rheumatologist considered that she was in remission, so she was able to stop her medication. She’s now 39 and has chosen to eat a vegan diet, and although Jenny can still have flare-ups of pain in her joints she’s no longer dependent on any arthritis medication.

    If you’ve enjoyed reading my blog, check out my daughter’s blog.

    Cathy Hill

    CONTINUE READING
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    Musculoskeletal Health Australia
    14/Jul/2021
    MHA Blogs

    Liz’s top 10 tips

    I have been in pain for 60+ years. I started to have severe back pain in my early teens. I remember sitting at my desk propping myself up to relieve the pain by resting my ribs on the desk. The pain affected me academically and sports-wise at school. I found standing and walking difficult and still do. My back pain was not correctly diagnosed until I ruptured a disc some 25 years later and it was then that I was diagnosed with Scheuermann`s disease.

    My ruptured disc was removed and the surgeon told me my back was a mess and to go home to bed and stay there. Thankfully, I decided I didn’t want to do that so found a very good physio and did 3 sessions a week with her and aqua exercises every day for 3 years. I was partially paralysed in the right leg but slowly I began to walk again. She said I needed to keep moving and to keep fit which was very good advice! So, I decided to start farming as I had always wanted to do this even though you have to be mad to do it with long hours and very little financial reward! This was the best decision ever.

    In 2013, I was diagnosed with arthritis in both hips and had both replaced. It has since appeared in my hands, spine, left shoulder and just recently it has been diagnosed in both knees. It makes moving around difficult, but I know I must keep moving or I will seize up. My hands cause problems due to lack of strength so opening bottles and so forth can be very frustrating. I am still working full time as this gives me the motivation to get out of bed each day and keeps me mobile. I have also been diagnosed with osteomalacia, bursitis, tendonitis, carpal tunnel, Sjogren’s disease and neuropathic pain in both feet so my musculoskeletal conditions are wide and varied!

    I have put together my top ten tips that I have found useful – I hope you find them so too.

    My tips

    1. Keep pain where it is. Don’t let it get into your head.
    2. Don`t catastrophise. Pain is just an indication that something is not quite right. Don`t let pain be number one in your life. There are more aspects to you than your pain.
    3. Don`t ask “Why me?” as the answer is “Why not you?” More than 7 million Australians live with a musculoskeletal condition, so you’re not alone.
    4. Focus on what you can do rather than what you can’t do. Grieve over the loss but don`t dwell on it. Unfortunately, we all naturally lose function as we grow older which can be hard to accept.
    5. Take the responsibility for your health into your own hands. Get informed and be your own advocate. You know your body best as you live with it so speak up when you know something is not right.
    6. Eat well. You only have one body so give it the best care possible.
    7. Keep moving and keep those joints active. Pacing can help you get through the day.
    8. Learn to do things differently, e.g. lifting or getting in and out of cars. Try other ways of doing things to see what works for you.
    9. Each new challenge gives us a choice between being bitter or better. Bitter is soul-destroying and unpleasant for others. I choose better because I want to grow personally and to be my best self.
    10. Be grateful every day for something.

    Our guest blogger

    Liz got in touch with us after taking part in our 2020 national consumer survey. She kindly shared her story and her tips for living well with pain.

    CONTINUE READING
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    Musculoskeletal Health Australia
    18/Jun/2021
    MSK Kids Blogs

    You have sclero-what?

    A young person’s story of scleroderma

    Meet Mabel. She’s 13 and has scleroderma, a chronic condition that affects the body’s connective tissue. She shares her story with us here.

    How old where you when you were diagnosed with scleroderma?
    I was 6, nearly 7 years old when I was diagnosed, and now I’m 13, so I just realised that is half of my lifetime ago!

    Scleroderma’s a mouthful! Did it take you long to learn how to say it?
    I knew how to say it but I didn’t really understand what it was at first. My little sisters, who were 3 at the time could also say it!

    Can you remember how you felt when you were told you had scleroderma?
    I was surprised, but at the time it really didn’t feel like that much. Now as a 13 year old, I can see how dangerous and scary it was.

    What is the worst thing about having scleroderma?
    All the medicine and appointments, because it meant that I missed a lot of school. I didn’t get to go to school as much.

    Are there any good things about having scleroderma, or any ‘silver linings’?
    The silver linings are that I’m not afraid of needles because I’ve had so many. When my friends and I have to have immunisations at school or a flu shot I’m not scared or worried.

    You also meet a lot of kind, random people; people that you’ve never met before who give you gifts and are really nice.

    What is one thing you wish someone had said to you, or wish you knew about scleroderma when you were first diagnosed?
    That you don’t need to be afraid, as there are doctors and nurses who will be kind and help you, and other kind people who want to help you.

    What would you say to someone else who has just been diagnosed with scleroderma?
    I would tell them that all the needles are worth it, because they are going to make you healthy and your condition hopefully won’t get worse.

    Take the medicine, even if you don’t know if it is going to help, your medicine will give you a better chance of improving.

    What do you wish everyone else (teachers, friends, family, the big wide world) knew about scleroderma?
    I wish more people knew what scleroderma is, rather than saying “what’s that?” when they either ask about my hands and arms, and I tell them it’s scleroderma and then they have no idea what scleroderma is.

    Anything else you’d like to add?
    Just because you have a medical condition doesn’t mean you are different, it means you have a different ability.

    Appearances don’t matter because the outside is different to the inside.

    If you’d like to share your story like Mabel did, about what it’s like to live with a juvenile form of musculoskeletal condition (e.g. arthritis, back pain, Perthes, fibromyalgia), contact us here!

    CONTINUE READING

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