Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. It's really hard to believe this is episode number 50 and I really never thought that I would get this far. Well, it's not a huge number of episodes, it's still kind of a milestone and that I didn't know what would happen when I started this, if anybody would even listen. So it is kind of cool to reach that 50-episode mark. So I'm really happy about that. I also want to say that there's been a new addition to the family here for me, and that is my six-month-old Labradoodle named Bandit. He's in training to be my service dog, and I will be doing the training. He was started off by in a group called freedom fighters. I did an episode with a gentleman named Matt Burgess (https://podcasts.captivate.fm/media/27300c98-d40c-4e62-a9ed-85956c4a7f2e/as-ep-027-matt-burgess-freedom-fidos.mp3) a while back where I talked about Freedom Fidos (www.freedomfidos.org) and then got him, he’s now he's six months old. We're starting to do the training and he's picking up on a lot of stuff. We're already at good spots where we're going in and out of doors. With no hassle he sits down, waits for me to tell them it's okay to come to the door. I can tell you what, I've never had a dog that's done that before. So just that training is cool alone. I introduced him to me walking on crutches the other day to see how he would respond and he's done real well with everything. So listen, there'll be updates coming occasionally on how that's going and follow on Instagram, it's @as_podcast, where you'll see pictures of them and different things like that. So that's pretty cool, as we roll into this 50th episode, I also wanted to mention that we've climbed up and we're been now in a total of 89 countries. We've had other folks with Ankylosing Spondylitis listened to the show. So again, that's all wrapped up together. That's just amazing to me. So make sure you head over to spondypodcast.com and sign up for the occasionally when I feel like sending it out newsletter and make sure if you really could do me a huge favor. Go to the show notes of this episode, there's going to be a link to podchaser.com. I would love it, absolutely be grateful to anybody that would leave a review of the show. I'd love to ramp up the number of reviews out there on the show. I've received a ton of great feedback from so many of you. I'd like to see that reflected in reviews as well on podchaser.
So that kind of covers those and let's get into today's episode. In today's episode, I want to talk about Axial Spondyloarthritis. Man, that's a mouthful to even just say, let alone think about. So what is Axial spondyloarthritis? Well, it is a type of inflammatory arthritis that causes lower back pain among other symptoms, you know, affecting not only your lower back but your si joints, hip joints, knees, spine. So there are two main types. There's Non-Radiographic Axial Spondylitis and then there's Ankylosing Spondylitis. Most people are going to be familiar with the term Ankylosing Spondylitis and hearing these other terms, put in there can be new for a lot of people. So we do know that Axial Spondyloarthritis can be debilitating and progressive, you know, so you always want to make sure you're seeing a rheumatologist as soon as you think that there's any type of issue you might be dealing with. Talk with your family doctor, if they can get you a referral to a rheumatologist to make sure that you're progressing on the right treatment path.
Just in America, around five and a half million Americans have Axial Spondyloarthritis. You know, again, it's an inflammatory form of arthritis and it's associated with chronic back pain. In my case when I got it, it was really chronic hip pain. It was the si joints. When it came at me it hit my si joints like a freight train and that was where the bulk of my pain was for the first number of years. It a little bit my lower back but it it never came on as strong as it did in my hips. That was where I've always had the biggest issues; Axial Spondyloarthritis is really an umbrella term for the types of inflammatory arthritis that affects the spine and the sacroiliac joints that connect the lower spine to the pelvis. And these result in a lot of pain again, like I said, in your back hips, and buttocks. As I mentioned, there are two types of Axial Spondyloarthritis. There's the non-radiographic, and there's ankylosing spondylitis, we might say, well, what is non-radiographic mean? Well, that means that the damage to the joints is just not visible on an x-ray yet, so you could go in you can have the x-rays done you can be in a ton of pain and have high inflammation levels, but no damage. A number of years ago, rheumatologists might have kind of said, well, I'm not sure what's wrong with you. But now as its evolved, they're becoming much better at diagnosing everybody that is affected by this in a much quicker process. Not as quick as it needs to be but quicker. So when changes to the vertebrae, you know, the bones of the spine or the si joints don't show any change on an x-ray. That's known as non-radiographic axial spondylitis. Once the joints are clearly affected on an x-ray and that's visible, then the person can be instead diagnosed as having Ankylosing Spondylitis. Up to 6% of people with chronic back pain will ultimately receive a diagnosis of Axial Spondyloarthritis. But the disease often takes as long as 10 years to be diagnosed. That means 10 years of the inflammation doing damage before many get a proper diagnosis, and it can be longer. I see many people comment in different Facebook forums that they've had pain for 10,15, 20, and 30 years and kind of put it off. And that's really just years and years, decade’s worth of damage that can't be undone. It's really a shame, as we know these delays in diagnosis can have a huge impact on your quality of life and lead to disability Missed time at work, increased health care costs, and even worse, as the disease is progressive, you may become more debilitated over time. Left untreated, you know your vertebrae in your back can fuse, Axial Spondyloarthritis, one disease with two stages.
So our understanding of Axial Spondyloarthritis has really evolved in the last few years. “We now understand that Non-Radiographic Axial Spondyloarthritis and Ankylosing Spondylitis are both the same spectrum of diseases”, explains Hilary Norton, a rheumatologist in a private practice in Santa Fe, New Mexico who herself has AS, “the symptoms are the same. The response to treatment is the same, but we don't yet know who will progress to radiographic disease.” Indeed, non-radiographic axial spondylitis may occur. Early disease or may be a separate entity that never progresses to AS. “Every AS patient at some point was non-radiographic not everyone will progress to AS, particularly women”, says Dr. Norton. So different studies have found that rates of progression from non-radiographic axial spondyloarthritis, to AS of 5% to 30%, over two to 30 years reports Dr. Dodaro, a professor of medicine in the medical directory of Rheumatology clinics for Oregon Health and Science University in Portland. So who gets axial spondyloarthritis? Well, we know that age when it generally develops in people is young, generally starts in people during their teens or in their early 20s. In my case, it started somewhere around 9 or 10 and I was diagnosed by 14, which I thought was really young. But as I get to interact with lots more people on this, I find that there was many, many of us that were diagnosed at a very young age. By early 30s you have sore back, and you might start to look into it, but it generally starts well before a person reaches age 40. Again, there's a whole spectrum people that are diagnosed later than that, but I've been dealing with it for years. So it generally starts much before that.
Sex – Well genderwise, axial spondyloarthritis is now considered equal opportunity offender and this is fantastic. For many, many years, we used to think of AS as a man's disease, and that left women with the non-radiographic, if that's what they were suffering from kind of left out there to not ever get treatment, not ever be properly diagnosed and just left to deal with the pain. When I was diagnosed in 1984, I was told is primarily a men's disease, women get it, but it's usually not as bad. Well, that's really done a 180degree and we're looking at men and women on par. So that is fantastic for the women that listen to the show, and for just women in general that they can get the proper treatment plans. So what are some signs and symptoms of axial spondyloarthritis? Well, the primary symptoms are inflammation in your back, back pain that can occur because of chronic inflammation in the joints of your spine. Now this is in contrast to mechanical back pain which occurs because you know muscle strain or disk problems, issues like that inflammatory back pain and axial spondyloarthritis has some unique characteristics that when taken together can help doctors diagnose it. These include:
· Back pain that starts before age 45.
· Lasts for at least three months can be on and off but that's what they look for as a minimum of three months.
· Feels worse at night, generally in the second half of the night, improves with activity and exercise and worsens with rest.
· Responds well to non-steroidal anti-inflammatory drugs (NSAIDs), like aspirin, ibuprofen.
· Often occurs with alternating buttock pain.
So your back can hurt, your butt can hurt, your back, your butt can hurt occurs with limited spinal flexibility, which can become so severe that people cannot do day-to-day activities. Just bending down and putting on socks is impossible, says Dr. Deodhar, and that's where I'm at me picking up something off the floor is very, very difficult and I, due to multiple hip replacements, I really can't put my socks on anymore. So I invested in a sock puller man, that thing is fantastic. Put the sock on that, pull it up on my foot, and I'm good to go. Other symptoms associated with actual spondyloarthritis may include: fatigue, inflammation of the eye, which is uveitis and see a link in the show notes to episode number 48, where I talked with an ophthalmologist about that specific condition, psoriasis, inflammatory bowel disease, arthritis in one or more peripheral joints, like your hands, your feet, your arms or your legs. And then at the situs, which is inflammation in places where ligaments and tendons connect with bones such as the Achilles heel and your foot. The impact on quality of life can be tremendous when any just one of these happens, but when you put them all together, it can really severely limit what you can do. The one thing we know for a lot of us is this is largely an invisible disease that can rage through us at nighttime and a loss of sleep. I see many, many people talk about, I need a good mattress, I can't sleep. I'm up all night because of the pain. What do I do? How do I manage this? It really can affect people dramatically when you have a night or two of lost sleep, how your quality of life can deteriorate very quickly. As Dr. Norton says, the impact on quality of life can be tremendous. This is largely an invisible disease. You know, as we talked doing absenteeism from work is a big problem when you start to lose sleep, causes of axial spondyloarthritis. Well, this is what we don't really know yet. Doctors and researchers still have a lot to learn about what causes axial spondyloarthritis. It's a combination autoimmune and inflammatory disease, meaning that innate and adaptive immune systems the body's first and second line of defense are both involved, explains Dr. Norton. Well, some risk factors can't be changed, others can.
Genes and Family History - there is a genetic disposition to developing axial spondyloarthritis the risk of developing it increases if a first degree relative parent, sibling or child has it. The HLA-B27, which is a genetic marker is thought to be present in more than 90% of Caucasians with the disease. However, HLA-B27 is less prevalent among African Americans with axial spondyloarthritis. So that's something that they're looking into further as well. And again, if you go to the show notes, you can see links to this article, as well as number of supporting articles that talk about these different issues.
Environment - Factors in your environment and other diseases may increase your risk of developing ankylosing spondylitis, but these aren't very well understood. They include exposure to certain infections, toxins and pollutants, injury to affected joints, changes in the bacteria in your colon, and bowel inflammation. More research is needed to understand how such factors influence the onset and severity of AS.
Lifestyle - While some risk factors can't be changed, others can. Not smoking is important. Since this can worsen the severity of the disease says Dr. Norton. Healthy lifestyle choices such as exercising and eating a nutritious diet are also important.
You might be able to hear that little wolfing going on right now that's Bandit having a nightmare.
So back to the show. Eating a nutritious diet is also important while living with axial spondyloarthritis. We know that exercise is particularly critical because it can help to relieve symptoms of inflammatory back pain and help people with axial spondyloarthritis maintain a flexible spine and joint. And that's really where like I said, where I'm at. I can't exercise. I've had four hip replacements. So bending over picking up stuff off the floor. Now with my lower back being fused is virtually impossible. And that's one of the things that man it'll be trained to do is help me pick up things off the floor that I just can no longer do. So it's very lucky that I have access to this and I Know that it's gonna take a lot of work but it's it's gonna be well worth it I think when I'm done.
So how is axial spondyloarthritis diagnosed? Well, there's no standardized way it's diagnosed there's no standardized formula to say if you have this, this and this, it's a guarantee you got this is diagnosed through a combination of patient history, physical examination blood tests, the blood tests are for both the HLA-B27 and for markers of inflammation, such as that like a C reactive protein, and then imaging tests such as x-ray and MRI, since it can take up to 10 years for x-rays to show damage from inflammation. Clinicians tend to rely on MRI to help diagnose axial spondyloarthritis earlier. It's very important if you're offered an MRI, don't skip it, get in there and get it done so that you can make sure to get the earliest possible diagnosis possible and get the right medications.
Back Pain is so common in the general population, diagnosis of axial spindyloarthritis may come down to having accompanying symptoms, like eye inflammation, skin problems, like psoriasis, or inflammatory bowel disease, because everybody says, Oh, my back hurts. So you're going to need more than that to help the doctor along the path that you need to be directed down. Or maybe as your back pain gets better, you can exercise and that helps to alleviate some of the symptoms in the short term, long term as you still need a proper diagnosis. So you know, as as Dr. Deodhar says, If you exercise and your back gets better with rest, all these things can make you think Hmm, this back pain is different physicians need to keep their antenna up.
The importance of early detection of of axial spandyloarthritis. Early diagnosis is important. You know, it can help prevent unnecessary procedures and find a treatment that works for them to help minimize symptoms and maintain function says Dr. Norton. The early development of symptoms is one of the reasons for the delay in the diagnosing the disease, generally people who develop back pain in their 20s aren't aware that it could be from a chronic auto inflammatory disease says Dr. Norton. And we see that all the time as people say, I felt all this issues in my 20s, but I'm not my 40s and I'm finally getting diagnosed. When they do seek care, they may go to a chiropractor, a sports medicine physician, or even their primary care physician and may not get seen by the rheumatologist for quite some time. And since inflammatory back pain differs from mechanical back pain, that type that's caused by overdoing in the gym lifting weights or you know, picking up something heavy, treating it the same way will often with limited rest and physical therapy doesn't help and can result in permanent damage. The ongoing inflammation from your immune system will continue to cause pain and over time, possibly cause the vertebrae in your spine to fuse together. That's how I am, I wish I could send everyone a picture of me, a side picture of me standing just to see the probably 20 degree level that I'm hunched over from the spine fusing, I always look down at the ground. I really can't look up when I walk. So it's not what you want. I encourage you to make sure you really get seen, get these MRIs done, treat this as the seriousness it is, well, it's easy to think that your back pain is due to a muscle sprain or herniated disk. It's important to see that rheumatologist like I said, if your back pain has inflammatory characteristics, the good news overall on this if you want to look at the bright side of possibly having axial spondyloarthritis is all the ways to be diagnosed. Now, for women, you're being taken much more serious for men and women. The medication options now are so much broader. You can get in there with a good biologic that can really slow down or in some cases, almost stop the progression of the inflammation as long as you're on it, which gives your body time to adjust and control itself and not have to fight off all that inflammation. That you've been dealing with and again, not long term have to deal with the damage that it can do to your joints. So I encourage everybody again, to make sure you get to the doctors. Make sure you consistently get to the doctors, get your bloodwork done MRIs, x-rays, everything that they're asking you to do, so that you can stay on a proper treatment plan and make sure to kick as is behind. So again, thank you for listening. Please go out to spondee podcast comm sign up for the newsletter and make sure to if you would leave me a review on pod chaser out appreciate it until next week, everybody have a fantastic time. Take care.
Canadian Spondylitis Association - https://www.spondylitis.ca/spondyloarthritis/spondyloarthritis-diseases/axial-spondyloarthritis-axspa/
Creaky Joints article - https://creakyjoints.org/education/what-is-axial-spondyloarthritis/
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