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01/Apr/2020

Our worlds have turned upside down and inside out. Just when you think you’re getting the hang of the new normal of isolation and staying at home, a new restriction comes into place. These restrictions are vital to help prevent the spread of a highly infectious virus, but they do make it hard to find your balance.

It’s no wonder most of us are feeling anxious, stressed, upset, angry, vulnerable and a whole host of other emotions. When you also have a musculoskeletal condition, especially if you’re immunocompromised, all of these emotions may be heightened.

That’s why as well as looking after our physical health, it’s really important we look after our mental health.

We’ve put together a list of many practical things you can do to look after your mental health during the pandemic.

A quick warning, this is a ridiculously long blog 😉 but there’s so much we wanted to share with you!

Read it all, or just read the bits that are relevant to you at the moment and revisit as things change.

Find a new routine

This will obviously depend on what you need to do in your day, if you have people depending on you, if you’re working from home, have school work (or need to help others with school work) etc.

It might help to sit down with the members of your household and create a calendar that includes everyone’s commitments and needs. Things to think about when creating your calendar:

  • Get everyone involved. We’re living together in close quarters at the moment, without many of our usual distractions, sports and our friends, so it’s vital that everyone feels that their needs matter and they’re being heard.
  • Include specific time for fun stuff, exercise and connecting with family and friends. Dust off the board games – who doesn’t like a good game of Twister, Monopoly or Yahtzee?
  • Keep your weekends separate – this is really important so that you can get your chores done (sadly the laundry doesn’t stop because of a pandemic) and you have time to do creative stuff, exercise, and get a break from the workday routine.
  • Be very clear on your hours. It’s really easy to lose track of time. If you find this happening, set reminders on your phone to alert you.

Stay informed

There’s a lot of information out there about COVID-19, which can add to our anxiety and stress. But we need to stay up-to-date with factual, current information. Visit the Australian Government website for the latest from the government. Visit our website, follow us on Facebook, and/or call our Help Line weekdays on 1800 263 265 or email our nurses helpline@msk.org.au for info and support.

And once you’re up-to-date, put the news away for a while. It really doesn’t help our mental state to continually check what’s happening. Consider having a specific time (or two) when you check the latest news, and then go back to doing other things.

Get some sleep

We often struggle with sleep at the best of times, because we live with chronic pain. Unfortunately anxiety and stress can make this worse. But it’s important that we do all we can to get some decent sleep. Our physical and mental wellbeing is inextricably linked to good quality sleep – and getting enough of it. Read our recent blog for some practical tips on getting a good night’s sleep.

Exercise regularly

We’ve talked, and will continue to talk about the importance of staying active – both during a pandemic (still blows my mind to say that) and during normal times. It helps us sleep better, maintain our weight, manage our pain, reduces our risks of developing other health conditions, and it improves our mood. There’s very clear evidence that regular exercise reduces stress, anxiety and feelings of depression and boosts our self-esteem. So exercise outdoors if you can (while maintaining physical distancing), and exercise in and around your home. Read our blog about exercising during the pandemic.

Eat well

Hands up who’s eating more often, and more unhealthy food choices at the moment? 🙋‍♀️🙋‍♂️ Food is a comfort to us all…and when we’re feeling a bit lost many of us reach for the food that makes us happy. But remember this gratification is short lived. Try to stick to your usual meal times, and gather everyone together and discuss your day (as long as you’re all well). If you live alone, use one of the many apps available (e.g. House Party, Hangouts) and share a virtual meal with a friend or your family.

Be careful with alcohol and other drugs

The temptation may be there to drink a little more, or use other drugs to make you feel better. But any mood changes you may experience are temporary, and drugs and alcohol have a negative effect on our mental health and our wellbeing.

Stay connected

Many of us are feeling the effects of being isolated, even if we live with others. We’re missing our circle of friends, our various social groups, our workmates and our extended families. There are many ways we can stay connected and keep up with each other’s lives. The simplest way is to pick up the phone and call. Avoid discussing the doom and gloom of the news cycle if you can. Instead focus on the new things you’re doing, your triumphs, how you’ve been able to work through challenges. And if there is something really worrying you, or making you anxious or upset, discuss it with someone you trust. Don’t ignore it. Get it out in the open so you can deal with it. As well as calling people, use tech to connect. There are a ridiculous number of ways to connect with others using social media platforms and apps. If you’re not sure where to start, read From Houseparty to Hangouts, these apps can help you stay social in coronavirus isolation by ABC News.

Create something

Channel your inner creativity. It’s a great way to relieve stress, and distract yourself from the worries of the world. There are a lot of online tutorials and info to help you: write a poem/song/novel/blog; learn a craft/language/skill; grow a flower/herb/vegie garden; paint a landscape/portrait/abstract; organise your home/office/life; cook a new recipe.

The sky really is the limit. So ask yourself – what have you always wanted to do if you just had the time??

Turn off the screens/limit news

Although a lot of the tools we’re using to deal with this pandemic are online, we need to set ourselves limits. Too much screen time, too much news – it’s just not good for us. As with everything, moderation is key. Turn off the electronics and pick up a book, or go for a walk, weed the garden, do some deep breathing exercises, talk with someone, try mindfulness. Do anything else but look at your screen or the news…at least for a while.

Give yourself a break

Our world really is crazy at the moment, so it’s important to recognise that and give yourself a break. We’ve not had to deal with a pandemic on this scale before, so be kind to yourself, and if you have a bad day, or a meltdown, that’s ok, we’ve all done it. You’ll brush yourself off and keep on going. And if you feel like you’re not finding it as easy to move on, or get past these moments, it might be time to talk with your doctor about getting professional help.

Get help when you need it

This may be psychological help if you feel like you’re not coping emotionally, financial help if you’re worried about your money situation or legal help if you have some concerns about your employment rights, or you have questions about writing your Will or setting up Powers of Attorney. Getting expert advice can help relieve some anxiety.

Take heart

🧡We’ll get through this. We may have to change and adapt, but we will come out on the other side of this pandemic. We just have to be patient, follow the advice and guidance of our health professionals and the government, look after each other and be creative with how we live during these crazy times.

More to explore


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01/Apr/2020

“We’re not in Kansas anymore Toto. Welcome to our brave new world”.

OK, so I’ve mixed my classic Hollywood movie and a classic Huxley novel, but we really are in unchartered waters!

Just this week the Federal Government announced that telehealth will now be available for everyone. It’s one of the many measures the government is introducing, to enforce physical distancing and slow down the spread of the virus.

So what is telehealth and how is it even possible? 🤔

Simply put telehealth enables you to consult with your health professional over the phone or through a videoconferencing app (e.g. Zoom, FaceTime, WhatsApp).

Depending on the technology you have available, and how comfortable you are using it, you might have a conversation over your phone with your doctor (like any other phone call), or you may interact face-to-face through a videoconferencing app.

Don’t worry though – if you’re only comfortable talking on your phone, that’s fine. You don’t have to download apps and learn how to use them. But if you’re interested, they’re easy to use. They just take a little practice.

Will I have to pay more for telehealth?

No – telehealth appointments will be bulk-billed, so you won’t be out of pocket. And the apps are free to download and use.

With any new system we need time to adjust

As many of us have discovered as we’ve started working, schooling and just trying to entertain ourselves at home, there may be some teething issues.

If you’re calling over the phone you’ll need to adjust to not seeing your doctor face to face; if you’re using an app you’ll need time to adjust to using new technology.

And if you’re using an app you may also experience slower internet speeds, which may affect your consultation. This is more likely to happen during busy times when everyone’s trying to get online (streaming their favourite shows, catching up with friends, watching cat videos).

As with any appointment, there can also be issues with time. Your health professional may be running late, they could be having tech issues, other patients needing more time, a medical emergency, or because they’re human and also need to adjust to working from home. You may be running late too. So it’s vital we all try to be patient, and give ourselves and others some leeway as we navigate this new ‘normal’.

But we can make it easier

We’ve identified these potential issues not to freak you out, but to prepare you. So here are our top tips to telehealth harmony.

Be patient – if your doctor is running late, if your internet is slow, if your appointment is rescheduled due to an emergency, be patient. This can be really hard to do when you’re unwell or in pain. You can feel vulnerable and worried, and being stuck at home can be frustrating. But becoming impatient won’t change the situation and will only make you feel worse – both physically and emotionally. Make a cuppa, read a book, do a crossword, talk with your partner/cat/dog/kids – distract yourself while you wait.

However if you have chest pain or difficult breathing, or have a medical emergency, call 000 immediately.

Don’t wait for your telehealth appointment.

Be prepared – before your appointment, make a list of the things you want to discuss with your doctor. Put them in order from the most important to the least. That way you won’t finish your consultation and then kick yourself for not asking X. Also – be aware that your appointment may end earlier than you anticipate if there’s a tech issue or an emergency. So lead with your most pressing questions or concerns, and if you have time, follow with the ones that are less important.

Be kind – our health professionals are doing the very best they can, often under very stressful, trying circumstances. They’re our frontline during this crisis, so please be kind to them. And be kind to yourself. You’re learning new technology or new ways to do things and just trying to stay sane during an insane time – recognise that you’re also doing the best you can. So hang in there.

Talk with someone who cares

Call the National MSK Help Line – our nurses are available weekdays from 9am to 5pm on 1800 263 265 or you can email helpline@msk.org.au. They can help you with info and support about musculoskeletal conditions, managing pain, treatments, accessing services, COVID-19 and much more.

Call the National Coronavirus Helpline – if you want information on coronavirus (COVID-19). It’s available 24 hours a day, seven days a week on 1800 020 080.


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25/Mar/2020

Does anyone else feel like things are going slightly pear shaped at the moment? The COVID-19 pandemic has really thrown us for a spectacular loop.

It’s understandable that a lot of us are feeling anxious, worried and scared – it’s a pandemic for goodness sake, it’s normal for us to be feeling this way. However some people are taking it to the extreme and stockpiling loo paper, food, soap and now medications.

While it’s important to ensure you have your prescription/s filled, and that you have enough of the usual over-the-counter medications you would normally have headaches, sore throats etc, there’s no need for us to lose our minds and go overboard.

Stockpiling – it’s just not necessary

Panic buying has led to certain medications – both prescription and over-the-counter – having limits placed on them to ensure that we don’t run out. Common medications such as paracetamol, asthma puffers, insulin and EpiPens are now restricted

The Therapeutic Goods Administration (TGA), which is responsible for regulating the import, supply and manufacture of therapeutic goods in Australia, have stated that “as of 6 March 2020, the TGA has not received any notifications of medicine shortages in Australia that are a direct result of COVID-19. Therefore, while it may be appropriate for individuals to ensure that they have at least two weeks supply of prescription medicines in the unlikely event they are quarantined, any stockpiling of medicines is unnecessary.”

So please everyone, breathe. Make sure you have what you need, but don’t take more than that. There’s just no need for it. Let’s all take a deep breath and remember we’re all in this together.

The problem with hydroxychloroquine (Plaquenil)

Unfortunately, there’s one medication we know has become difficult to access in Australia. Hydroxychloroquine (Plaquenil) is used by people with rheumatoid arthritis, lupus, juvenile idiopathic arthritis and other autoimmune diseases. There’s been a rush to access this prescription-only medication after US President Trump mentioned that it was a “game changer” in the treatment of COVID-19.

Sadly, there have been reports from overseas that people taking these medications, to treat/prevent COVID-19, have become seriously ill. One man has died.

Thankfully on 24 March, the TGA announced that they were placing new restrictions where “only certain types of specialists will be able to prescribe hydroxychloroquine to new patients”. This is great news as it will help to ensure hydroxychloroquine is available for people with musculoskeletal conditions who need it to keep their symptoms under control.

And then there was ibuprofen

Common brands include Nurofen, Advil, Celebrex, Naprosyn and Voltaren.

There’s been quite a bit of confusion about the anti-inflammatory medication ibuprofen, which is used by many people with musculoskeletal conditions.

Initially the World Health Organization (WHO), stated that ibuprofen could make some symptoms of COVID-19 worse. This was based on a study published in The Lancet. But that’s been debunked

The WHO had to do a backflip stating that “based on currently available information, WHO does not recommend against the use of ibuprofen…we are consulting with physicians treating [COVID-19 patients] and are not aware of reports of any negative effects, beyond the usual ones that limit its use in certain populations”.

In Australia the TGA has stated that “there is currently no published peer-reviewed scientific evidence to support a direct link between use of ibuprofen and more severe infection with COVID-19. We will continue to monitor this issue”.

So at this stage, if you’re currently taking ibuprofen, or another NSAID, as prescribed by your doctor, don’t stop taking it without discussing with your doctor.

What if you can’t get out to get your medications?

If you’re self-isolating, sick or just can’t get out to get your medications, there are options for you.

  • Call your family, friends, neighbours. If they’re able to get to the pharmacy for you, that’s great. Remember to keep your distance – practise physical distancing (for example, arrange to leave your prescription, list, money etc in a certain place so they can pick it up without having direct contact with you). Wash your hands thoroughly before you handle the items you are leaving to be picked up, and after you handle the items that have been delivered.
  • Many pharmacies offer home delivery – so be sure to give them a call too.

Please stay calm

I know this is easier said than done, but pharmacies are an essential service, and remain open after many other (non-essential) businesses were required to close on 23 March 2020. So you can still access your local pharmacist – in person, over the phone, via a family member/friend or through other technology – and get the information, medication and support you need.

And while there is a lot of confusion in our community about so many things at the moment, the government, at all levels, is trying to keep us safe and healthy, but these are extraordinary times. So we need to remain calm, work together and stay kind. We will get through this.

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25/Mar/2020

Ok, so the title dates me…I’m a child of the 80s. Olivia Newton-John was a leg-warmer wearing goddess to many 😊

Sorry to be light-hearted…but I’ll do anything to get your attention.

During this crazy, unbelievable, unprecedented COVID-19 (coronavirus) time it’s important that we embrace the practice of physical distancing, also called social distancing (your choice whether to do this wearing leg warmers, but please, please, please just do it).

It’s the best option we have for slowing the spread of COVID-19 so that we protect the most vulnerable in our community (our older people, people with suppressed immune systems, people with chronic conditions, pregnant women and people with pre-existing health conditions). Obviously, this list includes many of us, so physical distance is important for protecting our own health and wellbeing, as well as the broader community.

Physical distancing also helps us to flatten the curve. You may have heard this term reported in the media and thought – “huh?? What does that have to do with me?”.  In basic terms when we practice physical distancing we reduce the risk of passing on the virus and we’re helping to spread out the number of people becoming infected over a longer period of time. By spreading it out, our health system is more equipped to handle the numbers and not become overwhelmed, which would be the case if we all got sick tomorrow.

And it’s not just us – many of our wonderful healthcare workers will inevitably get sick too. Which will affect the ability of the health system to keep up with the demand. So spreading this out over a longer period of time makes a lot of sense. Read more about flattening the curve here. 

Now more than ever it’s important we stay in contact with the people we care about

Personally, I like the term physical distancing. It’s seems to me to be less isolating and now more than ever it’s important we maintain our social connections (just not physically in the same space). By maintaining our physical distance we can still chat and stay in touch with friends, family and colleagues – using technologies like Skype, FaceTime, WhatsApp, Messenger, Facebook, emails, as well as going old school and actually calling someone (insert gasp here) and even send letters (both WHO and CDC have confirmed that you can’t catch the virus through your mail).

So what do you need to know about physical distancing?

Stay informed. This is really important. Misinformation leads normally rational people to buy more toilet paper they can use in a lifetime, causing shortages for others. It leads to fear, anxiety, confusion and anger. So stay informed with accurate, up-to-date information. Go to our website, we have a dedicated section with up-to-date, reliable and practical information on COVID-19.

Maintain your physical distance. But be careful with the pinwheeling arms (if you’re not a child of the 80s look it up). I saw someone doing that today to emphasise that she had enough space around her and she almost took her husband’s eye out (clearly he wasn’t keeping the recommended physical distance).

We’re advised to maintain at least 1.5 metres between ourselves and others. As a guide if you stretch your arms out to your sides (horizontal with the floor) and imagine this amount of space goes all the way around you. Now imagine everyone you come in contact with has the same amount of space around them. This is how much distance you need to keep between yourself and others.

Stay home. We’ve now entered a period that requires us to stay at home as much as possible. The 1.5 metre space around you is a guide for when you HAVE to go out. We’re being advised to only go out when absolutely necessary – when we need to go to the supermarket or chemist for supplies. If you do have to go out, try to avoid crowds and touching too many surfaces.

Now’s the time to embrace our inner introvert! Think about all the times you said you’d like to do X if only you had the time. Well now’s the time! Learn that language, write that book, do something with all your holiday photos, clean the clutter from your cupboard/house/garage, virtually travel the world, live stream the zoo, tune in to the Melbourne Symphony Orchestra online. You’re not only doing something you’ve always wanted to do, but you’re helping to flatten the COVID-19 curve.

Look after yourself. While you might be tempted to go full out couch-potato, you need to stay active, eat healthy foods, get plenty of sleep, wash your hands thoroughly and frequently, and generally look after yourself. Also go easy on the alcohol. These things will all help your immune system, and help you feel the best you can. And if you do become sick – whether it’s with COVID-19, a cold or some other illness, you’ll do better if you’ve been looking after your health.

Check in with others. There are many people on their own who may become isolated during this time. Call them. If you don’t know them (for example an elderly neighbour) leave them a note with your phone number and let them know you can help them out if they need groceries or other supplies. Also some people may just need to hear another voice and know someone is looking out for them.

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19/Mar/2020

Didn’t think we’d ever be writing those words!

Update – 23 March 2020 – From midday today, all indoor sporting venues and gyms across Australia will be closed until further notice. 

The government has just announced a ban on non-essential indoor gatherings of 100 of more people.

So what does that mean if you live with a musculoskeletal condition like arthritis, back pain or osteoporosis?

Well, it depends. One area you may feel the impact immediately is your exercise program. Exercise and being active is vital for all of us living with musculoskeletal conditions. It helps us manage our condition, our pain, our weight, and our mental health. It also helps us sleep better and gives us the opportunity to socialise with others.

However if you take part in classes or attend an indoor exercise centre or gym (that holds more than 100 people), you won’t be able to attend. This may be frustrating, but it’s one of the measures we need to have in place to prevent the spread of COVID-19 and protect the most vulnerable in our community. Many of whom have a musculoskeletal condition.

Some gyms and exercise centres have already closed, with the City of Sydney closing all its gyms and aquatic centres.

If you exercise in a smaller space (less than 100 people), that should be ok at the moment. Although it’s worth noting that there’s still the potential for people to contract COVID-19 at these venues.

Given that many people with musculoskeletal conditions do exercise in smaller spaces, including warm water exercise, tai chi and chair based exercises, we’ve pulled together the current information so that you can make an informed choice about where and how you exercise.

First and foremost – you need to stay home if you’re unwell. If you have any reason to believe you’ve been infected with COVID-19, call your doctor. Call them first – don’t go to the clinic if you suspect you have the virus. Call and let them know your symptom and travel history.

Warm water exercise classes

Based on current medical information there’s no evidence that COVID-19 can be spread through pool water, provided that it’s adequately chlorinated. However if you attend warm water exercise classes, the biggest risk for contracting COVID-19 is mixing with other people who may have the virus, particularly in a wet environment, which is ideal for passing on infections of all kinds. At this time we would recommend that you avoid warm water exercise classes and seek alternative ways to keep active. See our list below for more information.

Chair based exercise classes

These classes are great for people with mobility and balance issues, just make sure you’re spaced at least 1.5m from others, and all surfaces are cleaned and disinfected before and after class. Ensure that you practise good hygiene as outlined by the Department of Health such as washing hands with soapy water and covering your cough or sneeze with your elbow or tissue. Also remember to practice social distancing at all times.

Tai chi

Tai chi is a great exercise for people with musculoskeletal conditions. It’s gentle, helps improve balance, and it can be very relaxing. Also social distancing is already inbuilt in tai chi classes as participants generally need greater than 1.5m between people to do the movements. Again remember to practise good general hygiene as outlined by the Department of Health as well as practicing social distancing before and after class.

Gyms and fitness centres

These places are often humid and sweaty, with surfaces touched by many people. It can be an ideal place for the spread of germs. If you do go to a gym, they should have already put in place measures to keep people as safe as possible including: communicating with all members and visitors about both your responsibility in relation to hygiene and social distancing as well as their responsibility to you. Hopefully they have reduced class sizes and made sure there’s plenty of space between members and between equipment. You should also notice that cleaning and hygiene measures have been stepped up. If your gym hasn’t done this you should seriously reconsider attending.

Alternative ways to exercise

You may decide that at this stage, the risks of exercising indoor in public spaces are just too great for you. That’s absolutely fine, and totally your choice. We’re all dealing with the pandemic in our own way. But exercise and keeping active is important. So here are some other ways you can exercise during the pandemic:

  • Getting outside and going for a walk, jog or run is still a great way to stay active. If you’re doing it with a friend or a group, maintain space between each person. You may have to speak more loudly  but the space between you helps prevent the spread of the virus if it’s present, but not yet detected. And don’t forget – COVID-19 doesn’t spread to our pets, so take your dog for a walk. They’ll love it! And avoid walking, jogging or running in busy areas, or during busy times.
  • Use an old fashioned DVD and exercise in front of your TV. Or stream an exercise program online. Or use an exercise app. There are so many to choose from. Just make sure that the exercises are performed by people who know what they’re doing.
  • Dance around the house. Get the blood pumping with some of your favourite, high energy music, and shake it off!
  • Walk/run around your home and yard. At the beginning of the Chinese lockdown there was news of a man who ran a marathon in his own apartment.
  • If you have a WII Fit, or any of the electronic karaoke/guitar/music games that plug into your TV, set it up and go for it. Sing and dance to your hearts content. If you don’t have any of the electronics, just do some air guitar or air drumming. We’ve all done it, and it’s so much fun.
  • Get creative! One of our families has told us about how they’re blowing up balloons and using them as balls. For example, keeping them off the ground while they sit on opposite sides of the table, hitting balloons with fly swats and other improvised rackets for a game of tennis. We can be very creative when we need to be – let your inner exercise guru loose!
  • Use what you have around the house. You may already have exercise balls/bands and weights to use, or you can improvise with cans of soup for weights, steps ups on your stairs etc.
  • Incorporate incidental exercise. Check out our blog on how the little bits and pieces you do over the course of your day – for example cleaning, talking on the phone – can be made more active and really add up.
  • Go for a ride. Use an indoor stationary bike, or hit the streets or park on your bicycle.

There are lots of things you can do to remain active during this pandemic, and stay safe. These are just some of them. For more information, visit our website or call our MSK Help line weekdays on 1800 263 265. Or email helpline@msk.org.au.

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13/Mar/2020

Having children, self-belief and acceptance

Written by Shirani Wright

Read part 1 of Shirani’s story.

Another thing that was very hard for me – and I’m sure turned out much better than the doctors thought – was having my children. I don’t think my rheumatologist was overly keen on the idea, but he knew me well enough, not to try and talk me about of it as he knew that nothing was going to stop me and nothing did!

I was advised that I had to come off my methotrexate for three months before we started trying to get pregnant. This is because it’s a category X drug for pregnancy and can cause serious birth defects, including spina bifida. This was a bit scary.

The doctors thought that, by coming off methotrexate, I might have a big flare-up and not be able to even get pregnant. I came off methotrexate and luckily for me, no flare-up. They also thought if I did get pregnant there were a lot of other possible complications that could have resulted in the baby being born early.

My doctors pretty much implied I was too sick to get pregnant and carry to full term. Well, you know what they could do with that idea!! Even if I had to sit in bed for nine months and not move, I was determined to have children and that’s what I did. I have two beautiful girls, Chloe and Jacinta. I’m not going to say it was always easy, but it was worth it. I feel extremely luckily to have my two healthy girls.

I’d like the all the parents of kids with arthritis, and children with arthritis, to know it’s possible to have children of your own if you want to, even if you do have arthritis.

Having arthritis does make looking after my girls difficult sometimes, but I wouldn’t have it any other way. I wasn’t about to let arthritis stop me from having children!!! It’s easier, now they are both at school. I’m also very lucky to have a very supportive husband who understands my health issues and does a lot with the children as well as working full time and supporting me emotionally.

I also get emotional support from my friends, and family, but I’ve found that the Young Women’s Arthritis Support Group has helped greatly, as everyone in the group knows what it’s like to be in pain, be on medication, have bad days and everything that goes along with having a chronic illness.

I believe having arthritis has made me a strong person mentally and that it has helped me develop a positive attitude towards life. It often hasn’t been easy but I’m not one to back down from a challenge. I sometimes wonder what I’d be like as a person if I didn’t have arthritis.

We all have our limitations whether we have a disability or not. There are those who might not be able to walk but they might be a terrific artist. People with a disability can have just as fulfilling a life as someone without one. We can do anything we set our mind to. It might just take a bit of extra work but we can do it.

If I can give any advice to children with arthritis I would say, we need to believe in ourselves. We need to accept that we have a disability and that we have limitations but we shouldn’t let our disability define who we are. We are more than our disability.

To leave you, I’ll finish with a thought. Never give up and always shoot for your dreams!


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12/Mar/2020

Growing up, school and working

Written by Shirani Wright

I wake up in the early morning to go to the toilet. I look at the time – 5.00am – early enough to take my tablets. I turn on the lamp and automatically reach over and take my prednisolone, plus eight other tablets so they have time to work before I need to get up and get my girls ready for school. I go back to sleep until my alarm goes off at 6.50am and then I start my day.

Taking medication is a part of my life as I have systemic juvenile idiopathic arthritis. I was three and a half when it all began.

It started when I got bronchitis. My condition worsened and I was in hospital for six weeks. No one knew what was wrong with me. The doctors thought I had pneumonia, and although I was on IV antibiotics I just wasn’t getting better.

I was transferred to The Royal Children’s Hospital, where I had a number of investigations on my lungs and they discovered that I had a massive amount of inflammation. With this discovery and further tests, I finally had a diagnosis – systemic juvenile idiopathic arthritis or SJIA, an autoimmune condition that has stayed with me to this day. Not many people know that lung involvement, like I had, can be a part of some types of arthritis. And for me, joint involvement happened a bit later.

Since I was diagnosed at 3, I don’t remember not having arthritis. I think maybe this has made it easier for me than other people I’ve met who got arthritis at an older age, who might have been used to a certain life. I don’t remember what it’s like not to be in pain or discomfort every day or not to regularly go to the doctors, have tests, and be in hospital. It’s all just a part of my life and I’ve accepted it.

My twin sister and I had tennis lessons for a while but I remember I couldn’t run fast enough. I also did gymnastics too, so as you can see I didn’t let my arthritis stop me! My sister played basketball with a school friend for a time, I didn’t because of my arthritis. I don’t remember being particularly upset by this. I used to go and watch her team play and sometimes score for them.

At school, my arthritis didn’t affect me that much. I pretty much always joined in with PE unless I was having a particularly bad day. Sometimes if we had to walk somewhere from school my mum would organise for me to get driven by one of the teachers and I could always take a friend. Sometimes I’d be late getting to school if I was waiting for my tablets to work.

I felt like I had a bit of support from Musculoskeletal Australia growing up but not as much as there is available now. The Arthritis Foundation of Victoria (as it was known back then) ran camps during the summer holidays as a way for young people with arthritis to get together, meet each other etc. On these camps, they offered workshops run by doctors, massages and free time. It also gave us the chance to meet other young people with arthritis.

Up until those camps, I think I had only met one other child with arthritis; that’s why I think MSK Kids is a really great idea. It gives kids and young people an opportunity to meet each other and support each other. It also gives their parents the same thing. I’m sure my parents would have liked to have known some parents of kids with arthritis.

One thing I didn’t like about having to take medication for my arthritis is that because I’ve taken prednisolone since I was 3 (and I’m still on it 41 years later) it has stunted my growth. So when I was 15 years old, I looked 10 or younger, and that really used to bug me! I remember once I was in a shop with my mum and the shop assistant said, “are you mum’s little helper” and I got really upset. As my mum said though, it’s not her fault she doesn’t know. Now that I’m an adult, being short doesn’t worry me really from a social point of view, it’s more on a practical side when I sometimes have trouble reaching things at the supermarket, or glasses on shelves etc.

I think one thing that got me through childhood with arthritis,(apart from my mum)
is a positive attitude. Because I have arthritis there are things I can’t do. However, I try to concentrate on what I can do rather than what I can’t. This isn’t always easy, but I try and take the attitude that there’s no use worrying about what I can’t do, as that won’t change the situation. I try not to get grumpy or sad about it as this doesn’t change anything. It just gets me down and isn’t much fun for the people around me.

It’s not always easy to accept my limitations but I try and think “well everyone, including healthy people, has limitations”. Not everyone can run a marathon but does that mean they’re not as good as someone who can? I would say NO. Those people who can’t do one thing might be able to do something that another person can’t do. A fish can’t walk, but they’re happy.

One limitation I have had to deal with because of my arthritis is that I’m not working.

I left school and went to university and then TAFE. I worked in several part-time jobs over 10 years. I had to change fields of jobs from Nanning to reception/admin work as nannying was too physical. I did try working full-time for a year and a half but ended up in hospital as I often became breathless (which happens a lot with my type of arthritis).

At that stage, my doctor said I needed to cut my hours back. I found this hard as up until then my arthritis had not really limited me in a big way. But the fact that I couldn’t work full time was a big thing. It made me feel like I was sick and not normal.

One of my friends didn’t understand this. She said it was good that I only had to work part-time. What she didn’t understand was that working part-time wasn’t a choice! I didn’t choose it, I had to do it for health reasons. After some time and thought, I accepted this change and continued with my life. I no longer do any paid work as my health isn’t up to it.

Read part 2 of Shirani’s story.


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12/Feb/2020

The jury is no longer out – the evidence is in

For many years, glucosamine has been one of the most commonly used supplements for osteoarthritis (OA). And even though the jury has been out on how well it works, it has been considered safe to use.

When it comes to glucosamine, there’s been a lot of conflicting research with some studies showing positive results and some showing no effect. To add to the confusion, studies have used different preparations of glucosamine – for example glucosamine sulfate, glucosamine hydrochloride, glucosamine sulfate with chondroitin etcetera – and different dosages. Which makes it difficult to determine how effective glucosamine really is for treating the symptoms of OA.

Until recently, despite the evidence indicating that glucosamine has little, if any benefit for people with OA, it’s been seen to be relatively safe for most people.

Now, a recent study has raised some serious concerns about the side effects of glucosamine for people with shellfish allergy.

What is glucosamine?

At the ends of most of our bones we have a slippery cushion called cartilage. It absorbs shocks and helps our joints move smoothly. Glucosamine is a naturally occurring substance found in our cartilage.

For people who have osteoarthritis, this cushiony cartilage becomes brittle and breaks down. Some pieces of cartilage may even break away and float around inside the joint causing inflammation and pain. The cartilage no longer has a smooth, even surface, so the joint becomes stiff and painful to move.

Treating osteoarthritis

Until recently, treatments for OA have focused on managing the symptoms – controlling pain and reducing inflammation. Medications included analgesics – e.g. paracetamol – and anti-inflammatories – e.g. ibuprofen (*see note). Along with exercise and weight management, these were the mainstays of osteoarthritis treatment. There has been no silver bullet or treatment that worked quickly and effectively.

So when glucosamine first came on the market, with positive reviews, many people were excited at the prospect of this new, ‘natural’ treatment and began taking glucosamine regularly. Glucosamine seemed to provide pain relief for many people with osteoarthritis and improve their joint function.

However over the years as more research has taken place, the evidence for the use of glucosamine has come under more and more scrutiny. Earlier, positive research was mostly funded by pharmaceutical industry, and later research, that showed glucosamine provided limited improvements, was publicly funded. This called into question the potential for bias in the earlier reporting of the benefits of glucosamine.

The peak bodies respond

Based on recent independent evidence, the American College of Rheumatology (ACR) and the Australian Rheumatology Association (ARA) have both responded publicly.

In their latest guidelines for treating OA, the ACR “strongly recommend against” using glucosamine for osteoarthritis. And the ARA has stated that this new information highlights growing evidence that glucosamine doesn’t help people with OA and it‘s a reminder that people with a shellfish allergy shouldn’t take glucosamine.

Safety concerns

It’s been known for some time that glucosamine can interact with blood thinners such as warfarin, and that it may raise blood sugar levels in people with diabetes. Glucosamine may also have a negative effect on cholesterol and chemotherapy drugs and has been linked to worsening asthma

However it’s not been widely known to the general public that many glucosamine supplements are made from shellfish and can cause serious allergic reactions.

Recent research from the University of Adelaide investigated “spontaneous adverse drug reactions [or side effects]…to glucosamine and chondroitin in the Australian population between 2000 and 2011, with a primary focus on hypersensitivity reactions.”

They found that during that period, the Therapeutic Goods Administration (TGA) was notified of 366 recorded adverse reactions. This is more than the combined adverse reactions of other supplements such as echinacea, valerian, black cohosh, ginkgo and St John’s wort. However, hundreds of thousands of people also took glucosamine during that time with no ill effects, highlighting that the risk of a severe reaction was still very low.

A major issue raised is the labelling of glucosamine. Labelling must report that it contains seafood, but not specifically shellfish. And this information is often in small writing. So people who are aware that they have a shellfish allergy may not realise that they’re taking something that’s harmful to them.

In 2016, the TGA changed the rules for this, and required manufacturers to be clear if products contain shellfish. And this information must be easy for consumers to find. However they also gave manufactures until August 2020 to do this. So many products publicly available may still not may it clear to consumers if the product contains shellfish.

So what should you do if you currently take glucosamine?

  • If you have a shellfish allergy stop taking glucosamine immediately and discuss with your doctor.
  • If you have taken glucosamine for some time and haven’t had any negative side effects, and want to continue taking it, then you can do so under the advice of your doctor.
  • Talk to your pharmacist about any potential interactions with other medicines you may be taking.
  • Talk with your doctor about other treatment options – including exercise, weight management, pain management techniques.
  • Call our MSK Help Line weekdays on 1800 263 265 or email helpline@msk.org.au and talk with our nurses about OA and ways you can manage it without glucosamine.
  • Stay up-to-date. As well as being painful, living with a chronic musculoskeletal condition can be confusing and frustrating, especially with so much conflicting information circulating through the news, social media, and our network of family, friends and acquaintances. Follow us on Facebook and sign up for our eNewsletter to stay informed about the latest information, research, events and much more.

* Note

We now know that these medications provide very little benefit for managing the ongoing symptoms of OA. Currently the best evidence is for weight management (maintaining a healthy weight or losing weight if you’re overweight) and exercise. Treatments such as massage, heat and the short term use of anti-inflammatories may provide temporary relief, but the evidence is not as strong.

References


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31/Jan/2020

With our crazy, busy lives it can sometimes feel next to impossible to squeeze in time for exercise. Add to that the unpredictability of living with a chronic condition, and our planned activities can often go flying out the door.

But there are things you can do to be more active. Incidental exercise – or the little bits and pieces you do over the course of your day – can really add up. It’s important to note that incidental exercise should not replace your regular, structured exercise program, but they’re a great way to boost your activity levels.

Here are some things you can do to increase your incidental exercise.

  • Watching TV? Whether you’re watching the latest episode of your favourite show or binge watching an entire series, get up and move around during the ads. No ads? No problems. At the end of each episode, do something active. Go outside and check the letterbox. Take the dog for a walk around the block. If you have an exercise bike or treadmill, use it while watching your show.
  • Love reading? Download an audio book and listen to it as you go for a walk. Just be mindful about how far you walk. It’s easy to get caught up in a book and walk further than you planned! Which has the potential to aggravate your condition and pain levels if you do too much.
  • Going for a long drive? Make your journey more interesting, and more active by scheduling stops for you to stretch, walk around and discover new areas. It’s amazing what you can find when you take the time to explore.
  • Shopping? Park your car a little further away from the shops than you normally would. Walk up or down the travellator or escalator – even if it’s just for part of the ride – rather than just standing in place.
  • Work meeting? Take it outside. Suggest that you have walking meeting. You get to be active and less sedentary, with the added benefit of fresh air.
  • Catching public transport? Get off a stop before your usual one. Explore your neighbourhood while getting some exercise and breathing deeply.
  • On the phone? Walk around while chatting, rather than sitting down. But avoid moving about if you’re texting or looking at your screen. Our aim is to increase activity levels safely, not get injured in the process!
  • Gaming? Fun! But it’s so easy to get caught up in the heat of the battle/chase/adventure, so set your phone alarm to go off every 30 minutes so you can get up and move.
  • Cleaning? Go hard. Give the tiles an extra vigorous scrub. Flatten your recyclables rather than just tossing them straight into your recycling bin. Clean your windows (groan – but how good do they look when you’re done?). Vacuum the house and use all of the little attachments (who knew they made such a difference?).

Obviously there’ll be times when these activities are not possible or practical – especially if you’re having a flare. However some of them may actually help with your pain – things like standing and moving when your back is really sore, breaking up long trips with stops and stretches – they’ll provide exercise and pain relief.

Give incidental exercise a try. Before you know it, you’ll be feeling more energised and noticing a difference with your pain levels, sleep quality and mood.

Plus your house will be sparkling! Win-win!

More to explore


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31/Jan/2020

If you live with persistent pain, then you’ve probably had many nights when sleep has eluded you. You’ve tossed and turned, gotten up, watched TV, checked your phone, gone back to bed, and then tossed some more.

Pain, muscle tension, anxiety and other factors can interfere with your ability to get to sleep, stay asleep and the quality of your sleep. And sadly, not getting enough good quality sleep can affect your pain levels, your muscle tension and your anxiety levels.

It’s like a colossal feedback loop that’s spiraling out of control and you can’t break free. OK, that was a little dramatic, but I’m also a little tired and cranky 🙁

The good news is there are many things you can do to break this cycle and get back to having a good night’s sleep.

  • Try not to put too much pressure on yourself to go to sleep. This leads to anxiety and stress if you don’t fall asleep quickly. Feeling anxious or stressed will affect your ability to sleep. Get out of bed. Don’t lie in bed tossing and turning. Have a warm drink (e.g. milk, no caffeine), do some gentle stretches or breathing exercises and go back to bed when you feel more comfortable.
  • Develop a sleep routine. Try to go to bed and get up at the same time each day.
  • Try some relaxation techniques. Consider mindfulness, visualisation, deep breathing or a warm bath before bed. These techniques will help you become more relaxed and may help you manage your pain better so that you go to sleep, and sleep well.
  • Write it down. Thoughts, worries and anxiety can prevent good sleep. Don’t take them to bed. Write them down and then put them away. You can deal with them tomorrow.
  • Be active during the day. As well as the many other benefits of regular exercise, it will help you fall asleep and stay asleep longer.
  • Keep a sleep journal. This will help you and your doctor work out what may be causing your sleep problems because it tracks the things that may affect your sleep. Make sure to write down things like the time you went to bed, the time you got up the next morning, how easily (or not) you fell asleep, how many times you woke up and for how long, things that woke you up (full bladder, outside noise, anxiety, pain etc).
  • Keep a water bottle by your bedside so that you don’t have to get up if you wake up thirsty in the middle of the night.
  • Avoid caffeine and alcohol for several hours before going to bed.
  • Don’t look at the clock. Constantly checking the time can make you anxious and anxiety makes it hard to sleep. Try removing your clock from the bedside, or cover it up at night.
  • Avoid using technology in bed. The blue light from laptops and tablets suppresses the hormone (melatonin) that makes us sleepy at night, so be sure to stop screen use at least one hour before bed.
  • Light. Is your room dark enough to allow you to sleep well? If not, look at solutions such as window coverings or a dim switch on your alarm clock. You might also try using an eye mask.
  • Noise. If you have no control over the noise in your environment (e.g. a barking dog, loud party, your partner’s snoring), ear plugs may be an option. Or playing soothing, gentle music softly in the background can also be helpful at cancelling out other noises.
  • Clear your bedroom of clutter. Researchers have found a link between being surrounded by lots of “stuff” and your ability to fall asleep quickly and easily.
  • Seek help. If pain is constantly keeping you awake at night, discuss it with your doctor for information and advice.

More to explore

  • Read our more detailed page on sleep.



Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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