Episode 5 – Patient stories behind the back pain facts with Joletta Belton

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Back pain is the most disabling health condition on the planet and costs more than cancer and diabetes combined. In this week’s episode, six of the ten patients that presented the 10 scientific facts every person should know about back pain ( http://dx.doi.org/10.1136/bjsports-2019-101611 ) in last weeks episode discuss their stories of recovery (where they were, where they are now, and how they got there).

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Episode Show Notes:

Ten scientific facts about low back pain:
http://dx.doi.org/10.1136/bjsports-2019-101611

Video’s of the facts presented by patients available here:¬†

Joletta Beltons links: Twitter Website

Other patient advocates who presented the back pain facts:

Adrian McGregor Tina

 

Other resources:

PainHealth 

Pain-Ed

 

 

Transcript

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body logic physiotherapy empowering people to achieve better health welcome to episode 5 of the empowered beyond pain podcast proudly brought to you by body logic physiotherapy in this week’s episode we hear the stories from some of the amazing people that brought you ten facts every person should know about back pain in last week’s episode persistent pain that impacts our quality of life can be distressing we often hear stories of people feeling hopeless and getting down which is a really normal response when pain can take us away from doing things that bring us joy and meaning in our life adding the disappointment felt after yet another treatment doesn’t work or the clinician you were recommended to see tried their best but still wasn’t able to help not to mention the time and financial costs of seeking care it’s no wonder paint associated with mental ill-health like stress depression and anxiety these impacts of pain were common in the cohort of people with disabling low back pain that motivated the 10 facts about back pain scientific paper we discussed last episode and as you’re about to hear there are common themes that help people get from a place of pain worry fear and distress back to living again so you’re about to hear from six of the 10 patients that presented the back pain facts as they share their stories of where they were where they are now and how they got there following this I have a longer conversation with gelada belton now gillette ER is the co-chair of the international association for the study of pains global alliance of pain patient advocates task force and the patient and public partnership editor at the Journal of orthopedic and sports physical therapy julia has a lived experience of overcoming impacts of persistent pain which you can read all about on hope a fantastic blog at WWE payback pain facts videos and research papers and a transcript at the show notes page which is www.ilga.gov we hope you enjoyed this episode of empowered beyond pain and remember to ask is there more to pain the damage [Music] my name’s Jamie I had lower back pain for about nine months six months barely got out of bed when I was in pain I kind of got wrapped up in the whole internet checking what I should do and going to physios and doctors that was Tommy kind of counterproductive stuff that kind of ended up in me being one week out of getting a spinal fusion I found a right physio and so everything changed after that I got off all the drugs I was on Trammell and there was two other types of drugs that escaped me now but I was on a lot of them I’m not feeling real good and once I found this physio like I said everything turned around it was nothing hands-on it was all just exercises to do and building confidence in myself again and yeah I got out of it and things are really good now it’s back to normal except on I’m smarter now because I know how to handle and manage the pain when it comes and it did come recently again I hurt my back digging trench and I knew how to deal with it and it was heaps better hi my name is Joe I’m a firefighter from Perth WI before treatment I was absolutely terrified of my pain I thought my pain meant that I was damaged and I feared that any movement I did through the pain would just cause that damage to get worse as a result I was I was moving less and less and avoiding pretty much anything that would cause a flare-up which led to more and more flare-ups because I found the less that I moved the less I was able to move now I’ve got my life back I do everything that I enjoy yeah so there’s there’s really nothing that restricts me anymore I do everything that I was able to do before I still have pain but it doesn’t bother me in the way that it did I think that the meaning of the pain has really been taken away and I think the biggest message that I got that helped do that is that pain didn’t mean damage and that you can you can have pain and it just just means that you’ve got sensitive structures and it doesn’t actually mean that there’s there’s damage being done and that the things are actually getting worse if there was one message I could I could give to other P well in pain in my situation it’s that even though your pain is absolutely real you’re probably not as damaged as what you’ve been led to believe I know that I got some terrible advice really early on that that terrified me and and it was only when I started you know doing my treatment with the things really started to UM get better my name’s Anthony and I had back pain for nine years back then I would start my day with morning stretches to prepare my body for what I would expect to be a day full of pain running up and down my back glutes and hamstrings during work I would always take painkillers and rub my back quite frequently to relieve any sort of pain I had and at the end of the day got home from work and I laid down on the floor for half an hour and did nothing just to relieve the tension there now I’m pain free I hit my deadlift and squat goals of a hundred and eighty kg and 140 kg respectively I can play basketball as hard as I want without repercussion and I’ve taken up Muay Thai and boxing just because I can and I’ve got a son on the way and I look forward to bending over and picking him up and doing whatever a dad needs to do everything changed due to the education I received around back pain rather than having the symptoms treated I was made to understand that it was my fear of pain that causes caused me to alter my movements and avoid certain movements back then I would tense up every time I bent over or I would avoid bending over with a rounded back but essentially it was the understanding that I needed to start relaxing and moving as my as naturally as possible as my body was designed to do and not be afraid that really changed everything in relieved or the or the tension and eventually the pain I’ve lived with persistent pain for over eleven years for the first four years I struggled both coming to terms my situation and with the often intense pain hours suffering I struggled to work to sleep and just to generally function at that time the main strategies I was given to deal with my pain and disability were medical once put sample surgery injections and medications thankfully for years in I had a life-changing episode of care from a physiotherapist he not only helped me improve my physical situation but he also helped me gain a better understanding in my condition and how to better self manager I learnt that there are far more ingredients to the pain experience than just my simple anatomy changing my focus from trying to fix my physical body – considering the wider aspects of my life for example sleep stress an enjoyment of life help me improve my situation considerably although I still experience daily pain and sometimes that can be severe I’m thankfully able to live a good and happy life with pain angel McGregor 55 years of age I have a chronic low back pain when I first presented to my GP about the pain it was never really explained by him or anybody else the difference between acute pain and chronic pain it wasn’t long before I was in the regime of pharmaceutical drugs right up to the morphine touches I had been prescribed core strengthening exercises all designed to prevent that my commitment to the spine and then up to spinal surgeries all that resulted in the same levels of chronic pain I knew I had to find another way out of this that came from a nudge towards the psychological factors that might be contributing or causing the pain so looking at reducing anxiety level or stress levels sleep movement nutrition all these sort of kind of mind-body connection things that I’ve never really heard about before my current position is a level of acceptance that chronic pain might be here to stay but I’m actually doing stuff and contributing and doing the sort of things that they measure to my life before my life was was really just kind of dark and despairing and and very very small I became very isolated and withdrawn from all of the people in the places and the experiences that really mattered to me and not going to work anymore because I was off on workers compensation was hugely upsetting and disruptive to my life because so much of my life had done based around work and that was what gave me a sense of meaning and purpose and self-worth so when I was off work and in this kind of dark and despairing place I didn’t feel like I had a sense of self-worth I didn’t have a purpose anymore I didn’t really know who I was anymore it was really really disconcerting and really upsetting and difficult my life is so much different now and it took time to get there but having a different understanding of pain led to a different understanding of myself with pain and allowed me to get back to my life and allowed me to get back to the things that were meaningful to me and the activities that were meaningful to me and I get outside and play as much as possible I snowboard I hike I I run or dog probably more like dogging now I don’t go to the gym so much anymore because outside is my gym and then I also do all the other things that I love like reading and cooking and coloring and those sorts of things which are pretty simple indoor based activities but also things that I had gotten away from when I was in pain so just just able to do those things that kind of make me feel more like me my understanding of pain completely shifted and there was a lot of cognitive dissonance going on when I first started to learn like about pain biology and pain ferrand but I just understood pain to be less about damage and less about what’s happening you know immediately in those tissues that’s a part of it what’s going on petition is part of it but that pain is a whole person experience but that it involves a lot of different biological factors a lot of different psychological and social factors too and that all of those things are very real and based in our biology so I came to understand my pain is being very real which before meant that it had to be like found on a scan and understanding pain is real in a different way that it’s something that is affected by and affects all of our systems your nervous system our immune system our endocrine system and in that those things change over time we’ve been in pain for a long time because a really cool thing is that our biology is constantly adapting with our new and repeated experiences and that I had some control over what those new and repeated experiences were and that was huge that was huge to understand that I wasn’t doing more harm to myself when I was engaging with the activities that that meant something to me I mean that they would actually be beneficial a huge thanks to all the patients that generously gave up their time to present the ten facts and for sharing their stories when it comes to persistent low back pain they have walked the walk and we hope that their stories help others to find out more search back pain facts be jsm or head over to the pain ed website so there’s the audio from the stories behind the facts videos which you can find by the link in the description the audio from gelareh was cut from a longer chat that i had with her which you’re about to hear now a huge thanks to gelada for having this chat with us you can find her on twitter at my cup of joe or through a website she has a load of helpful and insightful content on there so Joanna can you tell me about what your life like you know before before my life was was really just kind of dark and despairing and and very very small I became very isolated and withdrawn from all of the people in the places and the experiences that really mattered to me and not going to work anymore because I was off on workers compensation was hugely upsetting and disruptive to my life because so much of my life had been based around work and that was what gave me a sense of meaning and purpose and self-worth so when I was off work and in this kind of dark and despairing place I didn’t feel like I had a sense of self-worth I didn’t have a purpose anymore I didn’t really know who I was anymore it was really really disconcerting and really upsetting and difficult so what stuff couldn’t you do it like you know in terms of activities and things that you said were meaningful for you can you give me some examples so I I couldn’t do any of the active things that I used to do before and I was a very active person having been a firefighter I was very active at work all the time and trained really hard at work and then when I would get off work I would go to the gym that was a total gym rat and I was also a runner so my life was based around all of this kind of high-intensity activity and then all of a sudden I couldn’t do those things anymore and I started to develop all of these ideas about paying and what was causing it that it started to restrict my movement even more so I wasn’t even just not doing that high intensity stuff I wasn’t doing much of anything it’s barely leaving my house at one point so what was the key messages around all meanings around pain that you sort of understood at that time at that time I had very damaged based notions of what pain was I understood pain to be an injury and that that meant there was something wrong with the tissues or the joint or the structure where painless stuff so I moving what becomes really difficult when you feel like every time you move you’re doing more harm to yourself and more damage to yourself and if to me that that equation of pain equals damage meant that the more pain I felt the more damage there was so it became a very restrictive kind of beliefs mmm sounds tough so so weary now what’s what’s laughing lovely now and then your beliefs as well your understandings my my life is so much different now and it took time to get there but having a different understanding of pain led to a different understanding of myself with pain and allowed me to get back to my life and allowed me to get back to the things that were meaningful to me and the activities that were meaningful to me and we moved to Colorado after this experience which is a beautiful mountain state in the United States and I get outside and play as much as possible I snowboard I hike I run or dog probably more like dogging now and I just generally get outside as much as possible because we live in such a beautiful environment I don’t go to the gym so much anymore because outside is my gym and then I also do all the other things that I love like reading and cooking and coloring and those sorts of things which are pretty simple indoor based activities but also things that I had gotten away from when I was in paint so just just able to do those things that kind of make me feel more like me and I volunteer with the National Sports Center for the disabled so it’s with athletes and recreational athletes who are getting out on the mountain to see in snowboard I started a nonprofit that I co-founded with my friend back and I’m doing a bunch of pain patient advocacy work too so my life has become much bigger and much brighter and much fuller that’s awesome and and what’s your understanding of pain now my my understanding of pain completely shifted and there was a lot of cognitive dissonance going on when I first started to learn like about pain biology and pain finance and I’m a total Heat so I was I was totally into that stuff when I was learning it but I just understood pain to be less about damage and less about what’s happening you know immediately in those tissues but that’s a part of it what’s going on petition is part of it but that pain is a whole person experience but that it involves a lot of different biological factors a lot of different psychological and social factors too and that all of those things are very real and based on our biology so I came to understand my pain is being very real which before meant that it had to be like found on the scan and understanding pain as real in a different way that it’s something that is affected by and affects all of our systems your nervous system our immune system our endocrine system and and that those things change over time when we’ve been in pain for a long time because a really cool thing is that our biology is constantly adapting with our new and repeated experiences and that I had some control over what those new and repeated experiences were and that was huge that was huge to understand that I wasn’t doing more harm to myself when I was engaging with the activities that that meant something to me I mean that they would actually be beneficial neuro neuro-immune plasticity basically change over time and so you know if you wear some of the key maybe one or two or three factors that how’d you get from that the force base to you know your after where you are now for me I found it in including pain science which is not going to be where a lot of people found it but in in that reading for me I found validation which I think would be a really really important thing that I needed that I felt like my pain was validated that my pain real and in turn felt like I was validated that I was validated as a person that that I was still valued and valuable as a person or still could be and still worthy and and that was huge that kind of validation that I wasn’t just me that I wasn’t bringing this all on myself that this wasn’t all my fault was a really important thing for me to learn I’m and then also that understanding that my pain was very real but just real in different ways than I had understood before that it was much more complex than I had understood it to be it involved all aspects of my biology and not just my anatomy and that you know that psychological and social influence has impacted that too like that social isolation and withdrawal was a huge factor in my distress and in pain and being able to reconnect with things that matter to me was really powerful in a lot of ways because we become so disconnected from the things that make us feel like ourselves when we’re in pain that becoming reconnected to those things because we’re no longer afraid we’re doing time to ourselves to me a really important valuable thing yeah yeah that’s a powerful message it’s an awesome story Jelena thanks so much for sharing that with us and yeah we wish all the best so there you have it episode 5 of the Empowered beyond pain podcast as you heard there were some common themes across each person’s recovery particularly around there being more to pain than just simply tissue damage a point we discussed in episode 3 and 4 of the podcast for gelareh it was the integration of the current understanding of pain that helped her overcome its impact a great point that Jo later also highlights was that understanding pain science gave her validation that her pain was real unfortunately it’s not uncommon for patients to feel like they’re told that their pain is all made up or not real or all in their head if that’s you let me apologize on behalf of whoever made you feel like that I can almost guarantee that is not what they meant and they were just trying to help pain is always real 100% of the time while it’s true the brain is responsible for pain this doesn’t mean it makes up or fabricates pain it receives lots of information from your body your past experiences your beliefs and many other places and there are numerous processes that can turn up or turn down your experience of pain identifying learning about and addressing these factors can be an important part of improving if you’d like to learn more the knowledge tab of the body object website is a great place to start additionally the West Australian Department of Health has a fantastic website with up-to-date pain resources for the public just search pain health we’ll also link to that in the show notes page so that’s it for this week next week we chat with a world leading orthopedic surgeon and discuss the current understanding and treatment of osteoarthritis thanks for all your support so far on the podcast if you liked it we’d love you to share it or leave a review with your feedback we’d love to hear it so until next week remember to ask is there more to pain than damage [Music] please note what you heard on this episode of empowered beyond pain is strictly for information purposes only and does not substitute individualized care from a trusted and licensed health professional if you would like individualized high value care for your pain sports we’ll pelvic health problem get to the body logic website and make an appointment theme music generously provided by furven and cash