(Part 2) Living with axial spondyloarthritis (axSpA) – … — Transcript

[Music] Hello and welcome to the second episode of our two-part conversation series, taking a closer look at the arthritis condition axial spondyloarthritis, or axSpA. I'm Granularity, Chief Executive of Arthritis Ireland. AxSpA is a painful, chronic inflammatory disease that primarily affects the spine and sacroiliac joints. While much is understood about axSpA, it can sometimes be difficult to find accurate and reliable information. During these conversations, we will speak with medical consultants and specialists, providing you with some well-researched answers to common questions asked by those diagnosed with axSpA. I'm delighted to be joined today by Brianne White, Clinical Specialist Physiotherapist at the Mater Hospital Dublin. Brianne has been involved with an axSpA program in the Mater for over 15 years. Hi Brianne, thank you so much for joining us.

Thank you for having me. Um, I might start by asking you, as was a commonly asked question, you know, what is the difference, if any, between physical activity and exercise?

Well, physical activity is proven to be good for all of us for lots of health-related benefits. Exercise is a structured activity where you have planned and structured exercise to achieve a certain goal. For example, if you want to run a marathon, if you want to run a 10K, you would do some exercises to help you achieve that goal. If you wanted to become more flexible, you might do certain exercises to achieve that goal of becoming more flexible. So physical activity has well-researched health benefits for us all, but an exercise regime and exercise is specific to achieve a certain aim.

Okay, thank you. And I mean, in general terms, you know, what are the benefits of physical activity and exercise and then, you know, more specifically, one of those benefits for axSpA?

Well, exercise has been proven for lots of health benefits from cardiovascular benefits, bone health benefits, weight, blood pressure, etc., as well. And I suppose it's important to realize that patients with ankylosing spondylitis will have lots of these as well. So there's a big research study done in Ireland relatively recently, published in 2020, which identified about 700 patients in 12 different centers around Ireland and identified many comorbidities as well as the axSpA diagnosis: obesity, raised blood pressure, osteoporosis, diabetes. And it's well accepted that exercise, regular physical activity and exercise, has been proven to improve those and to prevent some of those conditions or to improve the marginalized conditions. Specifically for ankylosing spondylitis, a couple of other studies from Trinity in 2014 and 2016 have shown that patients with axSpA have a lower level of physical fitness compared to the non-axSpA patient cohort population cohort, and specifically reduced cardiovascular function, reduced flexibility, reduced strength, poor bone health, and they were less physically active. And those specific studies, albeit smaller studies, have identified huge improvements for axSpA patients: better cardiovascular health, better bone health, better muscle strength, better flexibility, improved chest expansion so you can breathe a bit easier. So this exercise is probably one of the most efficient ways of managing the condition.

Okay, and I suppose just as a follow-on, like, quality, why is there a particular focus for, you know, exercise for people with axSpA?

It's a question I always get asked. It's one I don't have an easy answer for. So what's generally recommended is that exercise program for someone like axSpA is a tailored program specific to that person. That might depend on their lifestyle, their comorbidities, if they have any other health issues, based on an assessment and individual assessments, because not every patient with axSpA will present the same. Some have more axial problems, some will have more problems with their upper spine or their lower spine. Some will also have co-existing problems with their other joints, such as their hips, perhaps their ankles and feet as well. So one size does not fit all. So I think if you're assessed correctly and appropriately and your lifestyle and your general health status are taken into account, a structured tailored exercise program is the best one for you. If you've got axSpA, this will be backed up with research done in Australia in 2016. They had an evidence-based consensus statement with lots of experts, and they didn't recommend one form exclusively of exercise. Traditionally, I think the focus is on lots of stretching, which frankly tends to be boring exercises for a lot of people, and therefore the adherence to them isn't great. But the general recommendation from that expert consensus statement from Australia suggested that people do a combination of cardiovascular exercise, so you're walking, running, swimming, that type of activity, which people are much more likely to do, some flexibility and stretching, some strengthening. So absolutely, you can do resistance training, weight training if you so desire. Some balance training, and that might incorporate Pilates-type training or yoga-type training. Weight-bearing exercise is very good for your generalized bone health as well. So those will be the exercises that are recommended as well.

Okay, you've probably covered my next question, which is what exercise is best for axSpA? What I'm hearing there is that there is no one form of exercise. I think the research has evolved our knowledge of us because traditionally, as I said, it was generally a stretching program, but the research has identified that multi-type of exercise tends to be the most effective. So what I say to people is do the exercise that you enjoy. You're much more likely to do it. Do the exercise you enjoy a lot. Do the exercise you don't enjoy a little bit, but make sure you do them. Do the exercise regularly. So regular exercise and adherence to an exercise program, you're much more likely to have a better outcome. So regular exercise as opposed to running one marathon once a year and doing nothing else for the whole year. A regular form of exercise you're doing a little bit regularly as you can has been shown to be much more beneficial. And your exercise should be tailored, so you should really consult with a rheumatologist, the chartered physiotherapist, your GP, and come up with an exercise regime that fits your lifestyle and is suitable for your general health status.

And, you know, in terms of when we're talking about types of exercise, are there any particular forms of exercise, you know, that should be avoided when it comes to axSpA?

Well, I'm always reluctant to ask someone to stop doing an activity they really enjoy. So if you're a marathon runner, if you're an Ironman triathlete, there's absolutely no reason why you shouldn't do that. If you're a golfer, and I'll always highlight the elite athletes in the world who have been diagnosed with the condition like axSpA. So there's inter-county hurlers; one fellow's got three All-Stars and eight Ireland medals in his pocket. And there are elite-level Curricular golfers. An ex-Premier League goalkeeper has been diagnosed with that. The captain of the Ryder Cup has been diagnosed with that. So these are activities, these people are offering an exceptionally high level of physical activity and sport who've got the diagnosis. Some research would recommend you stay away from certain sports such as high contact sports, so I would kind of do a better risk assessing. So some sports have a high level of risk. So traditionally, people would say avoid high contact activities such as rugby with a high level of potential neck injuries in rugby as opposed to a GAA exercise sport. Stay away from certain martial arts such as judo. Certain martial arts wouldn't be recommended. But I have met people diagnosed with axSpA who have completed Ironman triathlons, the full distance, who run marathons quicker than I could dream of running them and doing them. So, you know, I really would en...

a couple of other studies from trinity in 2014 and 16 has shown that patients with expa have a lower level of physical fitness compared to the non-expa patient cohort population cohort and specifically reduce cardiovascular function reduce flexibility reduce

strength poor bone health and they were less physically active and those specific studies albeit smaller studies have identified huge improvements for axe by patients better cardiovascular health better bone health better muscle strength better flexibility improved chest expansion so

you can breathe a bit easier so this exercise is probably one of the most efficient ways of managing the condition okay and i suppose just as a follow-on like quali why is there a particular focus for you know exercise for people

with aspar it's a question i always get asked is the one i don't have an easy answer for so what's generally recommended is that exercise program for someone like spa is a tailored program specific to that person that might depend on their

lifestyle their comorbidities if they have any other health issues based on an assessment and individual assessments because not every patient with lack spa will present the same some have more axial problems some will have more problems with their

upper spine or their lower spine some will also have co-existing problems with their other joints such as their hips perhaps their their ankles and feet as well so one size does not fit off so i think i think if you're assessed

correctly and appropriately and your lifestyle and your general health status take into account a structured tailored exercise program is the best one for you if you've got ax bar the this will be backed up with research done in australia in 2016 they had an

evidence-based consensus statement with lots of experts and they didn't recommend one form exclusively of exercise traditionally i think the focus is on lots of stretching which frankly tend to be boring exercises for a lot of people and therefore the adherence to them

isn't isn't great but the general recommendation from that expert consensus stadium from australia suggested that people do a combination of cardiovascular exercise so you're walking running swimming that type of activity which people are much more likely to do some flexibility and

stretching some strengthening so absolutely you can do resistance training weight training if you so desire um some balance training and that might incorporate pilates type of training or yoga type of training weight-bearing exercise is very good for your generalized bone health as well

so they'll be the exercises that are recommended as well okay you've probably covered my my next question which is what exercise is best for axe band what i'm hearing there is that there you know there is no one form of exercise i think the

research has evolved our knowledge of us because traditionally as i said it was generally a stretching program and but the research has identified that multi-type of exercise tends to be the most effective so what i say to people

is do the exercise that you enjoy you're much more likely to do it do the exercise you enjoy a lot do the ex somebody exercise you don't enjoy a little bit but make sure you do them do the exercise regularly so regular

exercise and adherence to an exercise program you're much more likely to have a better outcome so regular exercise as opposed to running one marathon once a year and doing nothing else for the whole year a regular form of exercise you're doing a

little bit regularly as you can uh has been shown to be much more beneficial and you know your exercise should be tailored so you should really consult with a rheumatologist the chartered physiotherapist your gp and come up with an exercise regime that

fits your lifestyle and is suitable for your your general health status and you know in terms of um when we're talking about types of exercise are there any particular forms of exercise you know that should be avoided when it

comes to oxfam well i'm always reluctant to ask someone to stop doing an activity they really enjoy yeah so so if you're a marathon runner if you're an iron man triathlete there's absolutely no reason why you shouldn't do that if you're a

golfer and i'll always highlight the elite athletes in the world who have been diagnosed with the condition like spa so there's inter county hurlers one fellow's got three uh all-stars and eight ireland medals in his pocket and there is elite level of curriculars

golfers an ex-premier league goalkeeper has been diagnosed with that uh captain of the ryder cup has been diagnosed with that so these are activities they're people are offering an exceptionally high level of physical activity and sport who've got the diagnosis

some research would recommend you stay away from certain sports such as high contact sports so i would kind of it's a better risk assessing okay so some sports have a high level of risk so uh you know traditionally people

would say avoid high contact activities such as rugby with a high level of potential neck injuries in a rugby as opposed to a ga exercise sport um stay away from certain martial arts such as judo certain martial arts wouldn't be

recommended but i have met people diagnosed with axe by have completed iron man triathlons the full distance who run marathons quicker than i could dream of running them and doing them so you know i really would encourage people

to maintain the activities that they enjoy doing and just seek a little bit of guidance from your your rheumatologist you're a chartered physiotherapist about specific activities okay and we know that you know when a person is living with ax ba you know flares can

become part of the if you like the progression of the disease or the journey of the disease um is it possible to continue exercising during during a flare absolutely i think the main thing is to recognize that you're having a

flare and that's probably the biggest obstacle for people and it takes a few years to actually properly understand what a flare is and how it manifests itself so if you're feeling more fatigued than normal if you're more pain

than normal you're suffering more night pain than normal your early morning stiffness is more apparent than normal then you may be having a flaring you should seek advice if you haven't gotten advice already from your your rheumatologist your gp

um and but yes you still can and you still should keep up with your exercise program but you need to balance that with the appropriate amount of rest if you're having a flare you should consider reducing your exercise

intensity but increasing your level of rest and your recovery but still do a little bit of exercise the last thing you want to do is to avoid all activity when you're having a flare but get it managed early

so you may need to discuss with your doctor regarding the appropriate medications to take and to keep active albeit at a slightly lower level and really listen to your body and if you're the same as that i described earlier on

if they're getting worse then you might be overdoing it okay um i suppose in terms of you know people starting to to maybe incorporate exercise into their lives if they haven't been active so far you know look many people be familiar

with you know these targets are 10 000 steps a day or 30 minutes of exercise five times a week you know but for somebody who's not currently active at all you know how can how can they get started

i think it's important to be realistic with your targets you know you're not going to run a marathon if you haven't run 100 yards you know so being realistic and picking an activity you think you'll enjoy doing whether it's a

full round of golf whether it's walking a five kilometer race walk and gradually progressing yourself slowly but surely to do this and making time and you have to balance your lifestyle and your commitments with work home family etc to

what activity you're looking to do so what i'd say is you know be realistic with your goals set yourself a goal in a time frame make sure it's realistic there's no point trying to train for a marathon when you know you you can't get

out and train a certain amount of times for a certain time period and to gradually increase your activities i always think that couch to 5k program has very good principles behind us you know that's an eight week or a 12-week program to go

from being relatively settle free to achieving a five kilometer on a walk or a run and i think it's got very good overall principles so you should try and see where your baseline is from an activity point of

view and try to increase it by up to 10 a week we all the research would show for various health issues that if you increase your activity by up to 10 a week your body and your bones and your soft

tissues are happy to happy to adapt to that increased workload so i said that the cage to 5k type of program would be a good program to do the other thing about adherence is a big issue so you know

if the weather's awful and you say i'm going to go walking seven nights a week you know in the middle of january february realistically most of us won't do that and we'll drop off from it after a while so it's kind of setting us up a

realistic goal and you know taking the opportunity to exercise it might be that on your commute to work you might walk a little bit rather than taking the liver so taking the bus it might be you know packing your car a

bit further away and going for a walk to and from the shop or you know walking to school with the kids as opposed to driving skill with the kids and tied in with an activity or achievable goals that's realistic uh for me like i tried

to exercise on my commute to or from work so it's it serves a purpose it serves a function that gets me from a to b so that when i do get home and i have my family commitments uh you know i i don't have to go back

out again and do that because that's can be difficult at times yeah i mean you've mentioned already the importance of exercise for expa any advice on how to stay motivated motivated because obviously once somebody is diagnosed with this

condition you know you're in it for the long the longer haul you know so an exercise is so much a feature of the management and so how can a person maybe stay motivated i think making yourself educated into the

condition is probably the key thing and if you look at the evidence and the research that's there and use the various resources to to identify this it consistently will say that being physically active and regularly exercising is something that will

improve your overall experience of the lifeline condition there's no cure for it it's a management strategy i think once you identify that and accept that i think it is uh it will help you plan how you're going to structure your your lifestyle and

your activity to to get back to or to get into doing exercise as well goal selling is important again being realistic and you know so a goal set of i want to achieve a certain event it might be walking around local

park it might be walking climbing a mountain it might be whatever activity you want to do and give yourself a realistic goal and give yourself a realistic time frame so i'll try to achieve this in a month two months three months etcetera as well

bearing in mind your work commitments and your lifestyle commitments as well sometimes stating a public goal is recommended so if you say to your family and your friends i'm going to walk a 5k walk and i'm going to do it on a certain

day then you know your family and friends may hold you to that a lot of evidence would say that exercise is better regular exercise is better than doing no exercise for expa structured exercise is better than random exercise

also exercise in a group setting can be more beneficial so you can be motivated by your your colleagues doing the exercise the adherence exercise is about someone else's depending on you to go for that walk or run or swim or whatever

you're choosing to do so i think publicly stating i'm going to i'm trying to achieve a certain goal yeah getting support for your family and friends work colleagues and then making time to try to achieve that goal is

probably the best way to do it okay and in terms of um i suppose one of the the beliefs or or maybe the myths around living with arthritis can sometimes be that exercise may may cause more pain or

make the condition worse you know what what you say in response to that again the research has evolved and that's like traditionally people felt that if you had an arthritis you'd never run you should never do certain activities but now there's some emerging

research to say that you know marathon runners have better cartilage in their joints than non-marathons because their body has adapted over the years of doing that physical activity and i'll always say to someone well if someone can run a marathon and someone

who can complete an ironman or can play elite sport who has the condition and they're managing very well with that you know being sensible but managing very well then i would be very hesitant to limit someone to you shouldn't run or

you shouldn't cycle a bike etc as well um so i think it's important you do the exercise that you enjoy if you're always a runner you're always a golfer you should still aspire to do that and continue that as much as you can

obviously modifying your in the middle of a flare but certainly i would be very hesitant to to stop some of the activities they like yeah and and i suppose it's you know being giving yourself the time and you

know putting time in for that effort and you know that commitment to your your family and friends for your adherence it should be a bit easier to do people understand why you're doing it and there's a reason why you do it

and you know in terms of how much a person can do in terms of how much exercise you know um is there an answer to that question or you know when might a person know they've done too much well certainly

i said we try to increase your exercise intensity by say 10 percent in a week is probably at a maximum i've done it myself where i've over exercised i've done too much activity i've been sore as a consequence of that

i think everybody has um so it is you know it's important to listen to your body if you find that you're getting more symptoms that are suggestive if there are more night pain more inflammation excessive fatigue then you might be

overdoing it i think it's important you're guided by someone so if you're guided by a chartered physiotherapist or your rheumatologist into your activity and monitor your activity as well and your activity should be tailored to you so some people will find that they've got

very stiff lower back and they might need to do some flexibility of their lower back on the same side some people might be particularly stiff there but they might be weak there so they might need to do more strengthening exercises for their

back as opposed to stretching exercises so it's a very individual condition it does affect people in lots of different ways i've met patients who've been diagnosed with lack spa who can move a lot freer than i can move

and i'm not aware of i've been diagnosed with like spa so you know the symptoms it's very much symptom driven and it's very much individual so i think it's important that you get advice and then you follow that advice and if things

aren't going according to the plan you consider asking for more advice and modifying your activity okay and you know what advice do you have for somebody you know when they're balancing their their pain but they're all with their need to exercise

i think you have to listen to your body i think you have to be sensible about it and pragmatic about it you know has to be fitted your lifestyle you know if you are continually hammering away hammering away hammering

away and your flare is lasting an excessively long time and you've consulted with your your gp or your rheumatologist then maybe you're overdoing it so i think you know it's very much trial and error and you might find at one period of your life you can

do a massive amount of exercise and you seem to be managing fine and and it's frustrating when there's other times of your life where you do relatively little and you seem to be you know intolerant of the exercise and

that happens both spa patients and non-expelled patients as well so you know i think if you listen to your body and gradually you know responds to how your body is feeling and you know just tailor your exercise dream

regime and your lifestyle to that okay i think it's the main main thing i'd recommend and i suppose lastly you know what would your you know your top piece of advice um to anyone watching you know who's having a tough time at the moment with

their with their axeva well i suppose lots of people have axe bar who are managing at a very high level there's some people who will ask by her are really struggling i always use the elite sports people as

inspirations so you know someone plays premier league football or plays into county hurling and have to diagnose and they're still able to achieve such a high level but we're not all olympic athletes so i think it's important that you're

sensible at your activity simple lifestyle factors that are good for your general health and well-being what do you do you don't have spa is important so again don't smoke if you smoke your inflammation levels tend to be higher you tend to suffer more

symptoms that's been researched you know being sensible about your diet and your weight there's a higher level of obesity in in patients with expa possibly related to inactivity so be satisfied your diet there's no specific diet you should follow a normal healthy diet

there's no research to say a certain diet is better than another diet and there are some anecdotal evidence from patients that prefer this diet or that diet if you look at the research there's no specific evidence from that

um so be sensible that you're diet from a weight management point of view take into account your lifestyle you know your lifestyle may allow you to walk to work or may allow you to walk the kids to school or may not you know

you may not have time to do 20 25 hours of exercise a week like the iron man athletes and the marathoners might do so you have to be realistic from that point of view yeah um you know do the exercise you enjoy a

lot do the exercise you don't enjoy a bit and you know we all tend to do what we prefer doing and we kind of neglect the the ones we probably should be doing we know we should be doing but we don't

particularly enjoy so do them a little bit um but do the exercise you enjoy a lot um and listen to your body and adapt your exercise regime and your lifestyle you know to how your symptoms are behaving okay and i think on that note we can we

can finish things up thank you very much for joining us today brian white thank you for having me and thank you very much for joining us today for more information on axial spondyloarthritis please log on to our website arthritis

ireland dot ie you can also get support via our online facebook support group and by contacting our helpline on zero eight one eight two five two eight four six thank you again for joining us and we look forward to seeing you again soon

[Music] you