I look at how pain, depression, and anxiety can make Axial Spondyloarthritis worse. This episode is based upon the article listed below and includes my thoughts and feelings on how I dealt with these issues.
Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. I hope everybody is having a fantastic week. As I record this we're over 10 days into December already 2020 is coming to an end. And I know for many of us that is fantastic. This has just been one incredibly strange year with COVID lock downs, the added anxiety, and the added stress. Originally, it was thought that maybe folks that were on any type of biologic type medications might stand to be at a greater risk for possibly catching COVID when little was known about earlier in the year. Now that seems to have been kind of cleared up and thought that no, you're probably not at any greater risk for catching it than anybody else, which has allowed people that are on biologics to maintain as normal a life as they can, you know, going out going grocery shopping, if able to doing what you need to do to kind of get by at any given time.
So with that, I wanted to talk today about depression, anxiety, stress, those things are ramped up now with the current conditions going on and that doesn't help out somebody that has axial spondyloarthritis because generally, our bodies, our minds are already ramped up dealing with depression, anxiety and stress in various levels, whether it be internalized or externalize. You know, we're carrying that as people with this disease and it can make a challenging situation much, much worse. So I wanted to look at an article I came across today in Ankylosing Spondylitis News. The article was from October, so it's fairly recent. And it talked about some issues that are being encountered with depression, anxiety and stress. As we know, with axial spondyloarthritis that is a rheumatic condition that affects your spine, neck, hips, you know, the joints of your body, and create stiffness, swelling, fusion, inflammation that is out of control as it goes after and attacks different parts of your body. So what was found in this new study? If you've had axial spondyloarthritis you're gonna kind of go, Yeah, I get that is that the study was called Ankylosing Spondylitis and undifferentiated spondyloarthritis. The relationship between living with these diseases and psychological well being, and that was published; I'll have a link to that in the show notes. It was in musculoskeletal care. And so a lot of research done on Ankylosing Spondylitis, non-radiographic axial spondyloarthritis tends to focus on our physical limitations, you can't bend far enough, you have limited mobility and hips, knees back, wherever looks at daily activities of life, and whether you can actually, you know, do those and function on a daily basis, what's not considered many types of the psychological effects that can be just as damaging as any of the physical effects, you know, with this disease, you can easily feel isolated, you can feel rejected, you can feel alone, all sorts of different emotions that you can go through at any given not only day, but our you know, as you deal with this condition, and what it takes is a toll on you. I know for me, as a young man with no treatment for the disease, I was angry a lot, you know, the proverbial Why me, I would see other people doing things that they wanted to do no visible or invisible illnesses were affecting them. And they were able to do pretty much anything they wanted. And here I was wanting to make plans wanting to do physical activities, and not knowing at any given moment whether my body was going to say, No, not today, you just you can't, and having no support system, nobody to talk to that was dealing with this condition that I could say, how do you deal with this? Or how do you deal with that, it was a very isolating, feeling a very lonely type situation to deal with. And it wasn't just, you know, the physical aspects, it was the emotional, it just really took a toll. And that played itself out all through my 20s and 30s. Very, very much in very different ways, probably hurt marriages, relationship with kids, you know, it affected it all, and you just don't know that until you are able to look back on it with a little bit of a different perspective and say, Okay, I can see this happening at this time. And I should have probably gotten counseling at the time. I didn't, didn't know to it's one of those situations where you don't know what you don't know and most of my 20s and a good chunk of my 30s I really didn't see a rheumatologist. I just kind of dealt with the disease and it actually really dealt with me. So between the anxiety and the depression, I really was becoming very difficult person to do. deal with in many ways. So as this article says, you know, in contrast, the emotional and psychological impacts of Ankylosing Spondylitis are rarely addressed in scientific studies goes on to say, even when studies do assess factors such as quality of life, they usually focus on how the disease affects a person's ability to do physical tasks, not the emotional toll the disorder can take on patients. And that's kind of what I was just talking about is the emotional toll that it took on me. Now there's a PhD in a researcher named Kate Kelly, and she is in Victoria University in Australia and she sought to investigate the link between a patient's experiences with pain and their psychological state. She interviewed and surveyed 161 people with AS and undifferentiated spondyloarthritis have a link to this in the show notes so you can delve deeper into it. But people with this disorder have the undifferentiated spondyloarthritis people with this disorder have as like symptoms, but with all the clinical criteria required for a formal diagnosis. So the survey involved 135 people with AS and 26 people with spondyloarthritis. The agent respondents ranged from 21 to 72 years old, 42 respondents identified as male, and 112 identified as female, and to prefer not to respond, what was found out as the average diagnostic delay from the time that they first started getting medical appointments and treatments for an issue to getting a diagnosis fell in line with what previous research had found, which was about nine years. And that's amazing to me, I, I guess I was about four years, from 10 ish or so till 14, which seemed like forever. So going nine years or so really, anybody that's gone that long, I really give your credit. That's, you know, that would certainly be a prime example of depression and anxiety setting in to take nine years for a diagnosis. The respondents were also asked to rate their pain using the brief pain inventory, which over the past day and over the past week, the BPI measures pain intensity on a scale from one to 10, where higher scores be more pain. On average, the participants reported pain scores of 4.26 for the past day, and 4.48 for the past week, they also reported their highest pain level experienced in both timeframes on average 5.5 for the past day, and 6.49 for the past week. These numbers are kind of important, as you'll see, because the BPI also measures the extent to which pain interferes with the various aspects of daily life, you know, including sleep, mood, walking relationships, and work across these measurements. The average score is both over the past day and over the past week, or around five or higher, indicating substantial impairment from pain, we can all tell you that, you know, when you see people with a s talking, it's kind of funny because of this hurts, this hurts, we can all be very empathetic to what each person is dealing with. But we also understand, okay, this person is having some pain. It's really until you go and talk to somebody that doesn't deal with it. And you kind of explain a little bit and they start looking at you going, how do you even function? How are you dealing with that, that you go? Oh, I never thought about it with this disease. I think my personal opinion is the people I've met, talk to interact with have probably the highest tolerance for pain that I've ever seen. There are things that I get done. And I'm probably not very high up on that tolerance level. But there's things I get done that make others squeamish and they're like, how do you even go through that. So when somebody with a s complains about pain, you better listen, because they're usually very used to dealing with it. Dr. Kelly further wrote, well, literature highlights that pain associated with the condition can vary from day to day, with periods of intense pain being described as a flare. The data here highlighted the significance and the persistence of the pain that individuals are living with. And that's what I said is, we live with such a high level of pain on a daily basis, and our bodies are built with a fight or flight method. And we can neither directly fight this. It's not a physical threat standing in front of us, nor can we flee it, which I think really causes our body a lot of confusion. They want to fight they want to flee. And yet we really can do neither we carry it with us all the time. Respondents in this study also completed what's called the Depression, Anxiety, and Stress Scale, Short Form-21. By comparing against normal values DASS scores can be categorized as normal, mild, moderate, severe, or extremely severe for depression, anxiety and stress. The average death scores for depression and anxiety fell into the extremely severe category. While the average death scores for stress were severe. This indicates that injury enrolled participants in this study were experiencing high levels of psychological distress Kelly wrote, The site is added that in an average population sample, less than 5% of respondents would be expected to follow an extremely severe category phrase I didn't depression. And so, but you can see under the study group, basically, the bulk of the people fell into the extremely severe category. So that shows the huge difference between the average populations out there and how it how pain is looked at. The results also showed significant correlations between pain intensity, and interference and DASS scores. That is, people who reported higher pain or a greater interference in daily activities were more likely to also report higher depression, anxiety and stress. And that makes sense, as Patrick Kelly points out, if you are having a harder time at any given day doing any daily activities, whether it be just stopping at a store to pick up groceries, or just doing general errands, or going into work, those are all going to ramp up not only your stress levels, but anxiety and depression. So it's not a wonder that, you know, everybody with this condition is at least at you know, a greater likelihood of having these conditions, maybe not all of us, and maybe not all at any given time. But the chances of us suffering from depression, anxiety and stress, at some point during your battle with axial spondyloarthritis is there and something you should be aware of. So the author goes on to say, well, the data did not directly show that the pain causes these psychological problems, the scientists suggest that at the very least, is likely a contributing factor said living with chronic consistent pain that an individual knows could get worse at a time can foster anxiety in itself. If you know that the potential is there to say, I could go from walking functioning adult to someone in a wheelchair in a space of a year, five years, 20 years, whatever it may be. That’s a very stressful situation. These thoughts could however, have a compounding effect, says Kelly, whereby an individual stops engaging in many daily activities out of fear that their pain will get worse, but then experiences a depressive thoughts due to the isolation and loss of experiences that this may bring. That shouldn't be a surprise to anybody. If you are living your normal life and then all of a sudden, within a few years, you go from being that to being house bound or having to greatly reduce what you like to do, because you're afraid of the pain that can happen from it or the you know, we all see that situation where we say, I know I really want to go do this, but I'm going to pay for it for the next couple days in recuperation time. Well, that can keep a lot of people that aren't willing to deal with the recuperation time. And so they don't go do whatever that experience is, and then become more isolated. And again, that loss of those experiences, just leads for less quality of life. So overall, the findings indicate that as takes a toll on a person's mental health, as such, psychological support should be made available for people for this and other rheumatic diseases, the scientist said, and that's something I agree, if you have access to mental health professionals, whether it be counseling or therapists, or religious based therapy, you know, whether it be a minister or pastor, whoever, whoever you can talk to, that can help you work through some of the emotional issues that you may encounter. You know, that's one of the strongest things, a lot of people view that as I'm showing weakness, because I can't handle the issue when I have to go to talk to somebody, in reality, that's one of the strongest things you can do is to look at yourself and say, I've gone as far as I can take myself, I need somebody's help, could be somebody just to, you know, hold your hand as you talk through the situation and guide you down the right path could be something more in depth as far as therapy goes. But reaching out to that therapist is never a sign of weakness. It's actually a sign of great strength.
So with that said, I hope everybody has a wonderful week, please go over to spondee podcast comm go in and check out I have 79 other issues. This is the 80th episode. I have 79 other episodes for you to delve right into and listen, learn share. I challenge everybody to share an episode with family or friends or another person with Ankylosing Spondylitis or non-radiographic axial spondyloarthritis share an episode with them so that they can hear what's going on with this. Let's really get these numbers ramped up and crush 2020 as it goes out the door and I can't thank everybody enough. If you're happy with what you're hearing, make sure to hit up the button A coffee show some support for the show. I would love it as we go to look for some great things coming in 2021 everybody have a wonderful day and a great week.