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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

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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
    gout-food.jpg
    Musculoskeletal Health Australia
    28/Jan/2021
    Health InformationMSK articles

    Can gout attacks be managed through diet?

    We often associate gout with gluttony and enjoying too much alcohol. Historical images of gout include overweight, ruddy faced, aristocratic men or royalty such as Henry VIII.

    But this isn’t the case and is too simplistic a view of a complex condition.

    To find out more about gout, what causes it and how it’s treated, check out our gout info.

    So what causes a gout attack?

    If you have gout, you know that an attack happens suddenly, often overnight, and you’ll wake up in a lot of pain.

    And it’s more likely to occur if you:

    • are male
    • have a family history of gout
    • are overweight
    • have high levels of uric acid in your blood
    • drink too much alcohol (especially beer)
    • eat a purine-rich diet (including foods such as red meat, offal, shellfish, fructose, beer)
    • use diuretics
    • become dehydrated
    • crash diet or fast.

    Managing your weight

    While you can’t control some of the risk factors to prevent a gout attack, you can control your weight. If you’re overweight, losing weight gradually and carefully can reduce your risk. However don’t go on a crash diet, skip meals or fast as this can also increase your risk of an attack.

    If you need to lose weight, talking with your doctor and/or a dietitian is a really good idea to get the information and support you need to lose weight in a healthy way.

    Other dietary changes

    It’s believed that lowering uric acid levels through small changes in your diet may help reduce the chance of future gout attacks. These changes include:

    • restricting or avoiding alcohol
    • avoiding binge drinking
    • eating a healthy, well balanced, colourful diet. Research suggests that the DASH diet or Mediterranean diet may be helpful. Read our blog on anti-inflammatory diets for more info.
    • drinking plenty of water
    • avoiding fasting or crash dieting
    • making sure you don’t overeat on a regular basis.

    Your doctor or dietitian can help guide you in making healthy changes to your diet.

    Keep taking your medication

    It’s important to note that dietary changes alone aren’t enough to address the underlying cause of gout – too much uric acid in your blood. For many years there’s been a misconception that simply changing your diet will help keep your gout under control.

    However the research clearly shows that medication is needed for most people with gout to manage it effectively. So if you decide to make some dietary changes, discuss this with your doctor and continue to take any medication you’ve been prescribed to manage your gout.

    Final word

    Gout is a painful, complex condition that affects many Australians. But there are things you can do to take control, including managing your weight, making changes to the things you eat and drink and taking your medication.

    Contact our Helpline

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

    More to explore

    CONTINUE READING
    massage-man.jpg
    Musculoskeletal Health Australia
    16/Jul/2020
    Health InformationMHA Blogs

    Massage your pain and tension away

    For many of us, massage is an important tool for managing the aches, pains and muscular tension associated with having a musculoskeletal condition. It complements the other things we do to manage our condition such as exercise, medication and mindfulness.

    What is massage?

    Massage is a hands-on therapy that involves rubbing and manipulating the soft tissues of your body, especially your muscles. There are many different types of massage including relaxation, shiatsu, sports, deep tissue, hot rock and remedial.

    Massage can improve circulation, ease muscle tension and help you feel more relaxed. A massage can also help relieve stress and help you sleep.

    In this blog our focus is remedial massage and self-massage.

    What’s a remedial massage?

    Remedial massage treats muscles that are knotted, tense, stiff or damaged. (1)  In consultation with the client, a remedial therapist will assess and identify which areas of the body require treatment, and use a range of massage-based techniques to optimise muscle function.

    Remedial massage helps loosen tight muscles and ease your pain and stiffness. And for many people with musculoskeletal conditions such as arthritis or back pain, this type of massage is essential to keep you moving.

    Seeing a remedial massage therapist

    A qualified remedial massage therapist is trained to “assess and treat muscles, tendons, ligaments and connective tissue and treat injuries and soreness”.(2) 

    Seeing a massage therapist regularly can help prevent a build-up of muscle tension caused by chronic pain, inactivity and injury. They can also help you manage your pain, maintain joint flexibility and function, and provide you with exercises and stretches to do between visits.

    Questions to ask a massage therapist

    Before seeing a therapist, you should do your homework and find out as much as possible. Ask questions such as:

    • What type of massage do you provide?
    • What are your qualifications?
    • Are you accredited with the peak massage body in Australia?
    • Have you successfully treated people with my condition?
    • Do I need to take all my clothes off?
    • How long are the massage sessions?
    • What is the cost?
    • Can I claim this on my health insurance?

    When you see the therapist you should:

    • Be open with them and communicate your needs and any health issues – whether they’re ongoing or new.
    • Make sure you’re comfortable before they start massaging. They may have placed your arms in a position that aggravates a neck or back condition, or have you lie in a way that causes pain or discomfort. If this occurs, explain to the therapist that the position doesn’t work for you. They can then make changes to ensure you’re comfortable and that you get the most benefit from the massage.
    • Ask for extra support if you need it. If you need a pillow or cushion to support your neck, knees or back, let them know so they can accommodate you.
    • Let your massage therapist know if the pressure is too hard, too soft or if anything hurts. Don’t suffer in silence.
    • Ask yourself whether it matters if you see a male or female therapist. Massage therapists are professionals who want to help you. They’ve seen people of all shapes and sizes and will use towels and sheets to cover you. However you do need to be relaxed during a massage, and if you feel uncomfortable or self-conscious you won’t fully relax. So if you think this will be an issue for you, ask for a massage therapist that suits your needs.
    • Try not to feel embarrassed if you fall asleep or pass wind during your massage. It happens – especially when your body relaxes.

    After your massage

    • You may feel a little sore or tender after your remedial massage. This may last up to a day. The massage has worked and stretched your muscles, much like exercise does. If you’re not used to this or it’s been a while since your last massage, you may feel some pain. A warm shower or heat pack can help alleviate this.
    • Do some gentle stretches, as you would after exercising. This helps you maintain some of the benefits of your massage – such as increased flexibility and reduced muscle tension.

    Giving yourself a massage

    You can relieve many of your own aches and pains by giving yourself a massage. You may even find that you do this unconsciously – when you’re sitting at the computer and you rub your neck, when you have a headache and you gently rub your temples, or when you’re applying a heat rub to your sore knee.

    It’s a simple easy way to relieve pain and tension. The good thing about self-massage is you can do it almost anywhere and it’s free! Try it next time you feel tense and sore.

    Self-massage tips

    • Warm up first – ease some of your muscle tension with a warm shower or by applying a heat pack (warm not hot) to the painful area.
    • Use smooth, firm strokes. You’ll feel the difference between strokes that are relieving muscle tension, and those that are adding to it. Adjust the pressure, from hard to gentle, based on your pain.
    • Add some massage oil (or lotion) – it can help your hands move smoothly over the skin. This isn’t essential, but can add to the soothing feeling of the massage.
    • Don’t massage over bony areas. This can be painful and may cause an injury.
    • Try using massage aids – such as a foam roller, massage balls or other massage aids; e.g. use a tennis ball or a golf ball to massage the soles of the feet. Simply place the ball on the floor, place your bare foot on top of it and gently roll the ball along the length of your foot. If you’re unsteady on your feet, sit down while you do this. You can also use the shower to provide a massage, especially on your neck, shoulders and back.
    • Massage regularly – this’ll help prevent muscle pain and tension building up.

    Get help with self-massage

    Sometimes you need help when you’re giving yourself a massage. Reaching a sore spot in the middle of your back is tough. Or being able to apply firm, consistent strokes to your neck and shoulders may be impossible if you have a musculoskeletal condition that affects those areas. So ask for help. From your partner, a close friend or even the kids. Just be sure to clearly explain what you need.

    You can remain fully clothed and have them massage those areas over your clothes. Combined with using a heat pack, a home massage can provide some relief from your pain.

    Contact our free national Help Line

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

    More to explore

    CONTINUE READING
    dog-in-bed-pain-blog.jpg
    Musculoskeletal Health Australia
    21/May/2020
    Health InformationMSK articles

    Pain – persistent, chronic, always there

    For many of us our pain is always there – sometimes in the background and at other times it’s very much in the front of our minds. It’s a constant – just like taxes. Even with a pandemic causing so much chaos and uncertainty, our pain persists, it’s always there.

    And quite frankly it’s a pain in the arse. It hurts. It’s exhausting. And it’s invisible.

    The Australian Institute of Health and Welfare last week released their latest report Chronic pain in Australia. It highlights that 1 in 5 of us lives with chronic pain. So next time you’re standing in a physically distant queue at the shops or taking a walk around the park – consider the fact that 1 in 5 of the people see you around you is also living with pain. It’s a massive problem, but there are things we can all do to manage our pain effectively.

    Know your pain and yourself

    It’s so important when you live with a chronic condition that you understand it. Learn as much about your condition as you can so that you can take an active role in managing it, including the pain associated with it. For example, what makes your pain better? What makes it worse? Do you tend to overdo things when you’re feeling great and end up paying for it over the next couple of days with increased pain? Or when you’re experiencing a flare and your pain is worse – do you get anxious, and everything becomes negative and too hard?

    Knowing these things – really understanding how your pain affects you physically, emotionally and behaviourally – will help you manage your pain and your condition better, even in this time of crazy COVID.

    Tackle the big three – exercise, eat, sleep, repeat

    I don’t know about you, but I’m finding my exercise, diet and sleep have all taken a hit due to the pandemic and iso. Not being able to get to the gym, changes to work and my normal routine and stress has really impacted how and when I’m eating, sleeping and exercising. And not in a positive way.

    This has had a very noticeable effect on my pain levels. If you’re experiencing this too, acknowledging it is the first step to changing things. So I can’t get to the gym – there are other ways to be active. So my routine has changed and as a result so has my diet. I can manage that. Stress and pain is impacting my sleep? I’ve managed that before – I can do it again.

    It’s all about finding the right mindset. This is a strange, new normal we’re living in. And it’s going to change and evolve as we continue through 2020. We have no roadmap for what’s been, and what’s to come – so we need to do the best we can to change and adapt to the constantly shifting landscape.

    Get help

    OK, that all sounded sooooo easy, right?? Nope.

    We may be able to change and adapt to some things but there will be times when we need to ask for help. From our family and friends, from our doctor, physio, psychologist. Whether it’s medications or physiotherapy to directly manage the pain, or asking a family member to carry the heavy laundry basket to the clothesline, or talking with a friend about your frustrations – whatever it is, there’s help available. You just need to acknowledge the fact that you need it and reach out. And remember the nurses on our Help Line are just a call or email away.

    Use your mind

    It’s a powerful tool. You can use it for distraction, mindfulness, relaxation, visualisation and guided imagery. None of these things will take your pain away completely, but they can provide temporary relief while you do a painful task, try to fall asleep, or wait for your pain medication to kick in.

    ‘P’ yourself – plan, prioritise and pace

    We’re often our own worst enemy. We do too much when we’re feeling great, and end up feeling rubbish for hours/days afterwards. Something ‘simple’ we can do to prevent this from happening time and again is to plan, prioritise and pace ourselves. First plan – what do you need to do today? Write it down. Now prioritise. How much of those zillion things do you really need to do? Often things we see as hugely important aren’t. And do you need to do them yourself? Can someone else do it? Now pace yourself. It’s not a race – so be generous with your time, spread your jobs over the day and build in space for rest breaks.

    Look after your mental health

    Living with persistent pain can sometimes be a roller-coaster of emotions. It’s perfectly natural that from time to time to feel sad, worried, angry, anxious, depressed or frustrated. Add a pandemic, and it’s no wonder many of us are feeling as if our worlds have turned upside down and inside out. It’s important that you acknowledge these feelings. You may want to write in a journal, talk with a family member or close friend or talk with a counsellor or psychologist. Don’t ignore these feelings or keep them bottled up.

    Your GP can refer you to a psychologist if needed on a GP Mental Health Management Plan. At the moment because of COVID-19 you can arrange to speak to a psychologist via telehealth (over the phone or a video call).

    Be kind

    To yourself and to others. It’s an unprecedented, really strange time and we’re all doing the best we can. So be kind to yourself – you’ll experience ups and downs, stumbling blocks, and barriers that get in your way. And some days you’ll need to work really hard just to keep moving. So give yourself a break. And remember 1 in 5 people are living with invisible chronic pain. And even more people are dealing with all kinds of stuff we can’t even imagine. So be kind to the people you encounter. It makes us all feel so much better than the alternative.

    More to explore

    Our nurse Clare discusses some simple things you can do to manage pain while at home in isolation, including pacing activities, exercise, getting a good night’s sleep and heat and cold packs.

    We also have some great blogs to give you more tips and info about managing pain:

    CONTINUE READING
    teddy.jpg
    Musculoskeletal Health Australia
    13/May/2020
    MSK articlesMSK Kids Blogs

    We had a dress rehearsal for COVID-19

    Thanks to one of our MSK Kids parents who has written this blog for us. They have chosen to remain anonymous. 

    When our world changed rapidly at the end of March due to COVID-19 social distancing regulations and remote learning, I was amazed that my child wasn’t freaking out about all the changes taking place. I put it down to her wonderful teachers and the fact that she has dealt with a major event in her life already, a chronic health condition and immunosuppressive treatment. Here are some of the ways my child has had the dress rehearsal to COVID-19, and so have we as parents.

    Experienced at social distancing

    When you have an immune suppressed child you have already had to cancel play dates, sleepovers and extra-curricular activities. Your child has already stopped sport at some stage, and has probably missed important days at school or with friends. You have already been fearful of every cough and sneeze in the classroom and you know the times of the year when chicken pox cases increase.

    We’ve been using hand sanitiser already

    Ask any parent who has spent time with a child in hospital, and chances are they know the smell of Microshield® very well (the brand of hand sanitiser in most Australian hospitals). We’ve been used to having good hand washing habits and know the importance of alcohol-based agents to clean hands. You probably already had a decent amount of hand sanitizer at home before COVID-19, as well as alcohol-based wipes (especially if you have to administer subcutaneous injections).

    We know and appreciate our healthcare workers

    It didn’t take this pandemic for us to appreciate our wonderful healthcare workers. We’ve known this for years through our regular interactions with doctors, nurses and allied health workers. Hopefully everyone else now recognises the importance of good health in our lives and our amazing healthcare workers.

    CONTINUE READING

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