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12/Dec/2023

This blog was written by Sass, a member of our Teen Talk group.

So. You want to know what life might look like at Uni with a musculoskeletal condition / arthritis? Well, as an individual whose bones/joints/various other systems dislike her, and who has completed her first year of uni, allow me to provide an insight into my experience in the hope it can help you too.

Right. Starting off strong with disability services. You should absolutely get in touch with any disability services on campus ASAP. Do. Not. Wait. They can help you navigate your Uni experience as a person with a chronic condition. I waited too long, and was ✨stressing✨ when in reality I could have fixed that by being on top of getting my accommodations earlier.

Ok, you’ve got your accommodations. What can you expect now?

For me, my hypermobility makes fine motor skills inconveniently painful, and so in line with this (and the general nature of Uni assignments often being digital) I was able to access my exams and tasks on a purely digital basis unless absolutely necessary. When I couldn’t use tech, I was provided with a student peer who scribed for me, and they were all the most lovely people. I also got extra time, which I rarely used if at all, but it’s good to have that up your sleeve regardless if you might need it.

Uni is also a very social time, and let’s be honest, socialising can be a little draining sometimes (where my introverts at?). The most important thing to remember here is that you should surround yourself with friends who are able to understand that you may require more rest or downtime, and/or that you may need activities to be modified for your enjoyment. Please, please, please, promise me you won’t burn yourself out by not speaking up about your needs. You deserve to be respected in all situations.

Managing the stress of exam season? Been there, and I’ll unfortunately continue to do that for the next two years! How I manage involves reading before bed to ensure I get good sleep, going on gentle walks, basically trying to reduce stress. I drink a lot of tea as well, and have the occasional hot choccie (gotta treat yourself, right?) and this helps me to relax. Also, I’ve been trying to stop myself from comparing my results to others. You are in a race ONLY WITH YOURSELF. Your only opponent is your personal best.

Ok, in summary:

respecting your needs + having reliable friends + not comparing yourself to others + getting accommodations ASAP = good year.

Now, in the words of Ignatius Loyola, go forth and set the world on fire. 🙂

 

If you’d like to write a blog to share with our community, please contact us

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 nurses. They’re available Monday to Thursday between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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12/Dec/2023

Our child has seen so many specialists and now they have been told to go to a kid’s physio. Are you thinking how will a physio help? Or how will this be any different to any other appointments we have? What do I tell my child they will be doing with them?

I am Nicole Pates, a Titled Paediatric Physiotherapist and director of Western Kids Health, a paediatric clinic in Perth Western Australia. I have been a Paediatric physio for over 13 years and these are the things I would like you to know about seeing a paediatric physio.

Children and teenagers, as we all know, are different from adults. Not just physically, but in all of their systems. Their brain is growing and their understanding of their body and how it works is constantly changing. Add into that school, friends and puberty and well, it can be a lot. Let alone managing chronic pain and fatigue on top of this. This is why it is important to work together with a physiotherapist who is experienced in working with kids and teens, who understands growth and development. You can search for a Titled or Specialist Paediatric Physiotherapist, who has undertaken extra study or experience in paediatrics, on the Australian Physio website https://choose.physio/find-a-physio

For families of children with persistent pain and / or fatigue, finding the right help can be tricky.  You can find a practitioner experienced in working in paediatric pain on the Australian Pain Society website  https://www.apsoc.org.au/Home/wcontent2/60

Once you have chosen a physiotherapist you will be *hopefully* be on your way to an appointment. You may be required to fill out some questionnaires or forms, prior to your initial appointment, depending on your reason for visiting the physiotherapist.

Typically, an initial appointment for children with chronic musculoskeletal / rheumatological conditions will be an hour or potentially more. For some families at Western Kids Health, we might sit down for 2 hours with not just physio but also OT and psychology. I encourage you to contact your chosen clinic to find out more about the first appointment. It is important to dress in clothes that are comfortable to move in and take a water bottle if needed.

Your physiotherapist may ask lots of questions in the first appointment. Not just about your child’s condition, symptoms, history, current team and limitations but also about their strengths, likes and future goals. Your physio will then watch how your child moves and plays, particularly the things they are having trouble with.

We love watching kids move and figuring out the different reasons as to why they might be having trouble or moving differently.

Being able to identify the activities that trigger your child’s symptoms, understanding their experience and watching how your child moves will enable your physio to work with you to formulate a plan. This plan should be collaborative and based around your child’s goals such as getting back to school, sport or hobbies. Having pain or fatigue can be so annoying and make moving and doing things difficult. But with chronic conditions, waiting for the pain or fatigue to go away before you get back into things can be an endless waiting game. Your physio will help you get back into doing things in a way that is meaningful, fun and supported.

Your physio may also provide education around:

  • Symptoms such as pain and fatigue and potential triggers / aggravators
  • Strategies on how to bring awareness to and strategies to minimise triggers and aggravators
  • Why your child may be experiencing pain.
  • How best support your child and their pain journey through supportive language in a progressive mindset

Your physio will also work hard to understand where your child’s physical function is at present and work out a plan to build on their activity level, strength, balance, movement control and most importantly, function over time. Your physio will support your child (and you!) with a plan for flare ups or set backs.

Other team members who your physio may recommend supporting you are

  • An Occupational Therapist, who assists your child to minimise the impact symptoms may have on sleep, school and relationships
  • A Dietician to understand your child’s nutrition needs whilst they are growing and create plans to support and meet these needs
  • A Psychologist to build coping skills and resilience and manage mental health symptoms such as low mood, stress or anxiety. This is important as often these symptoms are contributing to or exacerbating your child’s ability to engage in the physical rehab.

At Western Kids Health we run specialised groups in conjunction with the Arthritis & Osteoporosis Association of WA, including group hydrotherapy and strength and conditioning classes.

Hydrotherapy and physical conditioning for children with conditions like Juvenile Idiopathic Arthritis is safe and effective. Building strength through range is essential to keep your joints healthy. Your physio will work with you to help your child understand their body’s reactions and sensations as they try new activities. This will help your child build their capacity and understanding of body awareness. Your physio will help explore what movements and types of exercise work best for your child’s body, and most importantly making it fun!

You should see improvements over time with the right support and if you aren’t seeing those improvements, or your child isn’t reaching their goals, please discuss this with your therapy team.

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 nurses. They’re available Monday to Thursday between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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11/Dec/2023

Axial spondyloarthritis (axSpA), whether with x-ray change (ankylosing spondylitis) or without x-ray change (non-radiographic axial SpA), is usually diagnosed many years after the onset of symptoms. Until diagnosis, chronic back pain is commonly experienced by people with this condition. This webinar will help you understand what axSpA is, how is it diagnosed and what are the common treatment and management approaches.

Our presenter: Dr Lionel Schachna

 

 

 

 

Dr Lionel Schachna is the director of rheumatology at the Austin Hospital. He runs the spondylitis clinic at the Austin Hospital which was established in 2004 and has treated more than 2000 patients with axial spondyloarthritis.


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07/Dec/2023

Sjogren’s disease is a multi-system autoimmune condition. Your immune system is designed to identify foreign bodies (e.g. bacteria, viruses), and attack them to keep you healthy. However in the case of Sjogren’s disease, your immune system attacks the glands in your body that make moisture (e.g. tears, saliva). In addition, Sjogren’s disease is associated with a number of co-morbidities that can be classified as extra glandular manifestations and this can include inflammatory arthritis, lupus-like rash, and other organ involvement. This webinar will provide the audience a greater understanding of Sjogren’s disease – what it is, how it is diagnosed and how it is managed.

Our presenter: Associate Professor Alberta Hoi

 

 

 

 

Associate Professor Alberta Hoi is a rheumatologist, leading lupus expert and translational researcher in Australia. Her research focusses on disease predictors and outcomes, registry design and implementation, quality of care and patient centred interactions. She received her undergraduate medical degree from Melbourne University (1996) and completed a PhD in immunology on a NHMRC scholarship from Monash University. Her current clinical activities include seeing patients at Monash Lupus Clinic, where she serves as the Clinic Head, as well as Complex Rheumatology Clinic at Monash Health, and Autoimmune Clinic at Austin Health. A/Prof Hoi plays an active role in a number of investigator-initiated lupus studies and clinical trials. Currently she is the chair and custodian of the Australian Lupus Registry and is also on the executive committee and a founding member of the Asia-Pacific Lupus Collaboration (APLC).


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07/Dec/2023

In this webinar, Dr Christian Barton will discuss the importance of prescribed exercise and getting active to help manage knee osteoarthritis. A number of myths will be discussed and busted. The numerous benefits of exercise for osteoarthritis and general health will be discussed, and guidance on how to address pain to get active again provided.

Our presenter: Dr Christian Barton

 

 

 

 

 

Dr Christian Barton is a physiotherapist with his research and practice focused on the management of persistent knee pain and osteoarthritis (OA), as well as running-related injury. He is based at La Trobe University’s Sport and Exercise Medicine Research Centre in Melbourne and he also leads numerous projects related to facilitating patient and health professional education via digital and social media through the ‘Translating Research Evidence and Knowledge’ (or TREK) initiative. Christian also leads GLA:D Australia, which aims to improve access to appropriate exercise and education to all Australians with OA.


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07/Dec/2023

Have you heard about the microbiome, but are not really sure what it is? Wondered about the connection between the microbiome and your health? This webinar will review the methodology that has been developed to evaluate the human microbiome, discuss some of the pivotal studies that have evaluated the role of the microbiome in a person’s health generally, as well as studies specific to what is known about the microbiome in inflammatory musculoskeletal disease.

Our presenter: Conjoint Professor Marissa Lassere

 

 

 

 

 

Conjoint Prof Marissa Lassere is a clinical rheumatologist and Senior Staff Specialist Rheumatologist at St George Hospital. She is also involved in numerous research, ethics and quality improvement committees at a local, state and national level. Marissa has a track record in performing national and international collaborative research in establishing longitudinal cohorts in inflammatory arthritis, patient-reported outcomes (PROs), imaging biomarker development/ evaluation, statistical modelling of biomarker evaluation and surrogate therapeutics including simulation studies, meta-analyses and their evaluation, health informatics, adverse event ascertainment and quality improvement. She has many publications and has been successful in obtaining research grants, including a Centre of Research Excellence in inflammatorily arthritis and two Medical Research Future Fund grants in adult and juvenile arthritis. She is also the current Chair of the Management Committee of Australian Rheumatology Association Database (ARAD). More recently she has undertaken research and has received grants on the microbiome in inflammatory arthritis and is affiliated with the Microbiome Research Centre, UNSW at St George Hospital.


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07/Dec/2023

This webinar is designed to provide consumers with a better understanding of osteoarthritis and an overview of the most up-to-date hand therapy options for treating and managing their condition.

Our presenter: Ms Jessica Cauchi

 

 

 

 

 

Jessica Cauchi is an Accredited Hand Therapist (as awarded by AHTA) and a Clinic Director at Melbourne Hand Rehab. Jessica has a passion for providing client-centred, holistic care that is evidence-based. Jessica works with and educates clients about how to best manage their hand injuries and conditions to enable them to reach their identified goals. Jessica has a special interest in treating clients who have osteoarthritis and assisting in ways to maintain their function and participation in tasks they love to do.


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07/Dec/2023

Living with a chronic health condition can, at times, feel like your condition is in control. Would you like to find out how to put yourself back in the ‘driver’s seat’ with your condition being a ‘passenger’? This webinar will give you some tips and strategies on how to how to effectively communicate with your healthcare providers; how to plan ahead for your appointments; and advice about being aware of your emotions’ impact on your information processing and decision-making. Understanding more from the perspective of your health professionals and what they are aiming to achieve when working with you will also be covered.

Our presenter: Ms Bridget Scanlon

 

 

 

 

Bridget is a psychologist who is committed to working from the biopsychosocial model of health. She is passionate about helping clients understand the mind–body connection and developing their confidence to cope independently. Bridget works in a multi-disciplinary team at Empower Rehab where they assist people experiencing persistent pain to do more. With special areas of interest in chronic pain and healthy ageing, Bridget values and enjoys working collaboratively with other members of the client’s treating team to ensure the client can achieve realistic, functional goals.


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16/Nov/2023

Or how to manage fatigue

We all get tired. We overdo things and feel physically exhausted. It happens to us all. Usually after a night or two of good quality sleep the tiredness goes away and we’re back to our old selves.

But fatigue is different.

It’s an almost overwhelming physical and/or mental tiredness. And it usually takes more than a night’s sleep to resolve. It generally requires multiple strategies, working together, to help you get it under control.

Many people living with a musculoskeletal condition struggle with fatigue. It may be caused by a chronic lack of sleep, your medications, depression, your actual condition (e.g. rheumatoid arthritis, lupus, fibromyalgia) or just the very fact that you live with persistent pain.

Fatigue can make everyday activities difficult, and can get in the way of you doing the things you enjoy. The good news is there are many things you can do to manage fatigue and get on with life.

Exercise and being active. While this may sound like the last thing you should do when you’re feeling fatigued, exercise can actually boost your energy levels, help you sleep better, improve your mood, and it can help you manage your pain. If you’re starting an exercise program, start slowly, listen to your body and seek advice from qualified professionals. Gradually increase the amount and intensity of activity over time.

Take time out for you. Relaxation – both physical and mental – can help you manage your fatigue. I’m not just talking about finishing work and plonking down in front of the TV – though that may be one way you relax and wind down. I’m specifically referring to the deliberate letting go of the tension in your muscles and mind. There are so many ways to relax including deep breathing, visualisation, gardening, progressive muscle relaxation, listening to music, guided imagery, reading a book, taking a warm bubble bath, meditating, going for a walk. Choose whatever works for you. Now set aside a specific time every day to relax – and choose a time when you’re unlikely to be interrupted or distracted. Put it in your calendar – as you would any other important event – and practise, practise, practise. Surprisingly it takes time to become really good at relaxing, but it’s totally worth the effort. By using relaxation techniques, you can reduce stress and anxiety (which can make you feel fatigued), and feel more energised.

Eat a well-balanced diet. A healthy diet gives your body the energy and nutrients it needs to work properly, helps you maintain a healthy weight, protects you against other health conditions and is vital for a healthy immune system. Make sure you drink enough water, and try and limit the amount of caffeine and alcohol you consume.

And take a note out of the Scout’s handbook and ‘be prepared’. Consider making some healthy meals that you can freeze for the days when you’re not feeling so hot. You’ll then have some healthy options you can quickly plate up to ensure you’re eating well without having to use a lot of energy.

Get a good night’s sleep. Good quality sleep makes such a difference when you live with pain and fatigue. It can sometimes be difficult to achieve, but there are many things you can do to sleep well, that will decrease your fatigue and make you feel human again. Check out our blog on painsomnia for more info and tips.

Pace yourself. It’s an easy trap to fall into. On the days you feel great you do as much as possible – you push on and on and overdo it. Other days you avoid doing stuff because fatigue has sapped away all of your energy. By pacing yourself you can do the things you want to do by finding the right balance between rest and activity. Some tips for pacing yourself: plan your day, prioritise your activities (not everything is super important or has to be done immediately), break your jobs into smaller tasks, alternate physical jobs with less active ones, and ask for help if you need it.

Write lists and create habits. When you’re fatigued, remembering what you need at the shops, where you left your keys, if you’ve taken your meds or what your name is, can be a challenge. And when you’re constantly forgetting stuff, it can make you stress and worry about all the things you can’t remember. Meh – it’s a terrible cycle. So write it down. Write down the things you need at the supermarket as soon as you think of it –a notepad on the fridge is a really easy way to do this. Create habits around your everyday tasks – for example always put your keys in a bowl by the door or straight into your bag, put your meds in a pill organiser.

Be kind to yourself. Managing fatigue and developing new ways to pace yourself is a challenge. Like any new behaviour it takes time, effort and lots of practice. So be kind to yourself and be patient. You’ll get there. It may take some time, and there may be some stumbles along the way, but you will become an expert at listening to your body, pacing yourself and managing fatigue.

Talk with your doctor. Sometimes fatigue may be caused by medications you’re taking to manage your musculoskeletal condition. If you think your medications are the issue, talk with your doctor about alternatives that may be available.

Fatigue may also be caused by another health condition – including anaemia (not having enough healthy red blood cells to carry oxygen around your body), diabetes, high blood pressure, fibromyalgia and being overweight. If you’re not having any success getting your fatigue under control, your doctor may suggest looking into other potential causes.

So that’s fatigue…it can be difficult to live with, but there are lots of ways you can learn to manage it.

Tell us how you manage. We’d love to hear your top tips for dealing with fatigue.

FIRST WRITTEN AND PUBLISHED BY LISA BYWATERS IN OCTOBER  2020

Call our Help Line

If you have questions about things like managing your pain, COVID-19, your musculoskeletal condition, treatment options, 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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24/Oct/2023

Medicinal cannabis and you

Marijuana, dope, pot, grass, weed, Mary Jane, doobie, bud, ganja, hashish, hash, wacky tobaccy…they’re just some of the common names for cannabis.

Whatever you call it, it’s been used for medicinal purposes for thousands of years, until it became a banned or controlled substance in most parts of the world.

But for decades there’s been renewed interest in its use in healthcare, with many countries – including Australia in 2016 – decriminalising it for medicinal use.

Last year alone the Therapeutic Goods Administration (TGA) granted over 25,000 applications from doctors to prescribe cannabis, mostly in the form of an oil.

So let’s weed out some of the facts and explore the use of medicinal cannabis for pain and musculoskeletal conditions.

Is it marijuana or cannabis?

It’s both. They’re just different names for the same plant – marijuana is the commonly used name, cannabis is the scientific name. The preferred name for its use in healthcare is medicinal cannabis, to draw the distinction between medicinal use of cannabis and the illegal, recreational use of marijuana.

The tongue twisters – cannabinoids

It’s a tough word to say – far harder than musculoskeletal! – but an important one when we talk about the properties of cannabis. Cannabinoids are the chemicals found in the cannabis plant. They bind onto specific receptors (CB1 and CB2) on the outside of our cells and can affect things like our mood, appetite, memory and pain sensation.

Cannabis has more than 140 cannabinoids. The two major ones are tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is the cannabinoid linked with the sensation of feeling ‘high’ that’s associated with recreational marijuana use.

Cannabinoids also occur naturally in our body (endocannabinoids) and can also be created artificially (synthetic cannabinoids).

How’s it taken?

Medicinal cannabis, both plant-based and synthetic, comes in many forms including oils, capsules, oral sprays and vapours. Smoking isn’t an approved preparation as it can cause damage to the lungs and airways.

Does it work?

At the moment, evidence for its use to treat pain associated with arthritis and musculoskeletal conditions is lacking.

Cannabis has been illegal for so long that we don’t have the thorough, scientific evidence we need about: side effects, which cannabinoids (e.g. THC, CBD or a combination) may be effective, dosages, the best form to use (e.g. oil, capsules etc), the long-term effects, or the health conditions or symptoms it may be beneficial for. Research is emerging, but we need a lot more.

Because of this lack of research, the Australian Rheumatology Association doesn’t support the use of medicinal cannabis for musculoskeletal conditions. Their concern is that we don’t have enough info to ensure cannabis is safe and effective for people with musculoskeletal conditions.

The Therapeutic Goods Administration (TGA) has also stated that there’s “not enough information to tell whether medicinal cannabis is effective in treating pain associated with arthritis and fibromyalgia”.

Possible side effects

As with any medication – and medicinal cannabis is a medication – it can have side effects. They include: dizziness, confusion, changes in appetite, problems with balance and difficulties concentrating or thinking.

The extent of side effects can vary between people and with the type of medicinal cannabis product being used.

How do I access it?

Unfortunately it’s a complicated process. We aren’t at the stage where a doctor can just write a prescription that you can fill at any chemist. Medicinal cannabis is an unregistered medicine, which means your doctor must be an Authorised Prescriber or must apply for you to have access to it through the TGA’s Special Access Scheme.

But if it’s something you’d like to try, talk with your doctor about whether it’s a possible option for you. Together you can weigh up the risks and benefits for your specific situation.

You need to be aware that medicinal cannabis is not on the Pharmaceutical Benefits Scheme (PBS), so if you can access it, you’ll likely have to pay significant costs.

Another option for gaining access to medicinal cannabis is to consult a doctor at a specialised cannabis clinic. This also comes at a price, however it may be an option if your doctor isn’t an authorised prescriber or they’re not well-informed in the use and prescribing of medicinal cannabis.

Driving and medicinal cannabis

If you’re using medicinal cannabis it’s important that you know exactly what’s in it. If you’re taking a product that you’ve obtained through legal prescribers that only contains CBD, you can drive. However if you’re using a product that has any THC in it, whether on its own or in combination with CBD, you can’t drive. It’s currently a criminal offence to drive with any THC in your system.

Talk with your doctor and/or pharmacist for more information.

Interactions with other medications

As with any substance you ingest, there’s the potential for medicinal cannabis to interact with other medications and supplements you’re taking. So before prescribing medicinal cannabis, your doctor will review your current medications to reduce the risk of any negative effects.

However if while using medicinal cannabis you experience any unusual symptoms, discuss these with your doctor.

Finally

For many people the use of medicinal cannabis could be a long way off. And unlike the way it’s often portrayed in the media, it’s unlikely to be a panacea or magic bullet that will cure all ills.

It also won’t work in isolation – you’ll still need to do all of the other things you do to manage your condition and pain, including exercise, managing your weight, mindfulness, managing stress, pacing etc.

The important thing is to be as educated as you can and be open in your discussions with your doctor.

And be aware that cannabis for non-medicinal purposes is still illegal in Australia.

First written and published by Lisa Bywaters, Dec 2020.

For more detailed information about medical cannabis in Australia watch our webinar

Medicinal cannabis in Australia: Weeding out the facts 
Dr Richard di Natale, outgoing Senator and former leader of the Australian Greens, and Prof Iain McGregor, Lambert Initiative for Cannabinoid Therapeutics, University of Sydney discuss the use of medicinal cannabis in Australia – what it is, available forms, access issues in Australia and the current evidence for use.

Call our Help Line

If you have questions about things like managing your pain, your musculoskeletal condition, treatment options, 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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