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More Than Just Back Pain
Episode 666th September 2020 • The Axial Spondyloarthritis Podcast • Jayson Sacco
00:00:00 00:19:25

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Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How is everyone doing? Here in Michigan where I'm located, summer's unfortunately coming to an end and we're moving into fall and for me and my Ankylosing Spondylitis, the storm systems that come through on a much more regular basis, the wet cold that's coming at the end of this month starting into the fall. That's really when my AS kind of goes off the charts and I get the most amount of pain. 

So how are all you doing? How is the weather affecting everybody else I'd love to hear? If you go to, you can send a message to me and I will reach out to you I've got one that I have to respond to now from a gentleman that does a lot of really good exercise videos that you can find online and I'll bring more to you on that in an upcoming episode. But outside of that, the great thing I've got is a couple of good bits of information. The show just hit the 97th country that the show has been downloaded in, and that country was Israel. Somebody from Israel downloaded a few episodes to listen to, so that's fantastic. And if that person listens to this show, I'd love it if you would go to and shoot me a message from the Contact section. I'd love to get to know who is there, and that goes for any country. If you're out there in Japan, South Korea, Malaysia, Australia, England, Ireland, Brazil, Peru, any of those countries where the show gets downloaded, please go to and not only sign up for the newsletter, but also go ahead and shoot me a message to let me know that you're listening that that would be great to hear from everybody. And I will respond to y'all. 

So let's get into today's message, and I do have a special announcement at the end of the show, too, that I'll tease right now but let's get into today's episode. And I want to talk to folks about basically Beyond Back Pain, Five Warning Signs That You Might Have Ankylosing Spondylitis. What got me thinking about this was that as I was moderating an Ankylosing Spondylitis forum that I deal with on Facebook had a lot of messages coming in lately saying, I think I have as I have all the symptoms of AS, I haven't been diagnosed yet I have my first rheumatology appointment coming up all sorts of different things like that. They have been coming in really fast and furious the last month or so and so I thought I would do an episode directed towards people that are just recently diagnosed, or are in the process of getting a diagnosis or even trying to get a diagnosis and these five items that we're going to touch on. Now, how do they apply to Ankylosing Spondylitis, but they also apply to for the most part non-radiographic axial spondyloarthritis. So, just remember, as you're going through the process of being diagnosed, if your doctor says to you, no, I don't think you have Ankylosing Spondylitis, I'm not seeing the fusion or the in creased amounts of inflammation in your x rays, you know, turn to the doctor and say, Alright, what about non-radiographic, I have all the pain, checkmark each box for all the pain, the symptoms, the hurt back, sore hips, whatever it might be, but you're not seeing the inflammation. So to me, that sounds like non-radiographic axial spondyloarthritis let them tell you that reason they think that it's not that because maybe it is and maybe they just didn't consider it. I hate to say it, maybe they're not 100% familiar with it. So you have to sometimes maybe help them to help you so they don't pass you off as something that it's not in you end up going down a trail that doesn't help you and just frustrates you and doesn't help do it. Is your medical situation, what we know and I like to always start off episodes as Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects your spine and hips. You know, it can affect anywhere in your body, but spine and hips are what it's known for. It's generally you get a sore back, and that's one of the areas where a lot of people that starts is their lower back. So back pain is a top, you know, medical complaint. It's also a leading cause of missed work, you know, you can't go to work because you can't, especially if you have a physical job. So according to the National Institute of Neurological Disorders and Stroke, virtually all adults will seek attention for back pain at some point in their lives. The American Chiropractic Association reports that Americans spend $50 billion a year on treating back pain. So when you add that up across the globe, can you imagine the amount of money and lost productivity associated with just back pain, it's got to be through the roof. We all know there are many causes for having low back pain, you pick something up wrong you stepped wrong, you fell wrong, you slept wrong, all of that and that is something that our bodies will eventually heal itself of, you know, there's some type of sudden trauma that your body can then correct. But what you should be aware, the back pain can also signal you know, a much more serious condition like Axial Spondyloarthritis and that's the term I like to use sometimes instead of Ankylosing Spondylitis. What I'm referring to both AS as well as non-radiographic. So if you hear me talk about axial spondyloarthritis it's generally because these conditions are applicable to both of the ultimate diagnosis. So as we said, what is AS well, unlike ordinary back pain, Ankylosing Spondylitis, you know, is not caused by any type of trauma to the spine. It's that inflammatory arthritis condition that is affecting the vertebrae in the spine and causes the eventual bamboo spine for Ankylosing Spondylitis or just the intense pain for non radiographic. So the most common symptoms that you run across are the flare ups of spinal pain and the stiffness that the stiff disc will sometimes go away. The longer you go into the morning as you, as you become more active, and then can come on real heavy at night once your activity level slows down for the day. But the disease can also affect other joints, as well as the eyes and intestines. I've said this in other episodes, for me, mine attacked the hips first when I was a young kid, mine took out my SI joints by the time I was 15 or so, my SI joints were basically fused. And by the time I had hit 23, I'd had a right and a left hip replacement, so it doesn't always start off in the spine. But that's where the bulk of it is. So that's where we're going to focus on today's discussion. So that you know, hey, that sore back I should go get that checked out. It's it's not just a muscular issue; it seems to be more of a mechanical issue. Also, you might get iritis, and I did an episode, did several episodes on iritis and I'll have them linked in the show notes, one of them with an ophthalmologist. And that's something very important. You can end up losing some or all of your vision for untreated iritis or recurring bouts of iritis that you don't take seriously or that just get out of control that can happen. So there's so many things to be aware of that this is really as you get going. It's a lifetime of learning. So in advanced AS you're going to get abnormal bone growth in the vertebrae, and that can cause the joints to fuse. So when that happens, if you were to stand next to me, I stand all hunched over. If you go to as_podcast on Instagram, which there's a link in The show notes you will see pictures of me standing up straight or as straight as I can stand up with my cane, because my lower backs fused. And I had a lot of bone growth over one of my hip replacements that's limited the mobility or movement of that hip. We're working on that right now. But, you know, there's only so much that can be done. So anyway, you'll get the, the fused vertebrae as a possibility the fused sacroiliac joints are a possibility depends on if you have non radiographic you're not going to have that fusion. Unfortunately, you will have all the pain that comes along with axial spondyloarthritis. So the same medications for the most part will help you out. And then, at some point, that non-radiographic may progress to Ankylosing Spondylitis. We don't know there's no way to tell you for sure if it will or won't. It's just something that that's why the doctor's appointments are so important because it's something you want to keep on top of on a very regular basis. 

So what are some of the warning signs? 

Number one, you have unexplained pain in your lower back. If you're waking up every morning and there's some stiffness that tends to go away, either with some use of nsaid's, or just the movement of being active for the day, getting up showering, whatever you do, getting ready for work, if it tends to lessen, but keeps coming back day after day after day, there might be a problem. Lower back pain for no apparent reason, you know, in young people is not typical. So when teens and young adults who complain of stiffness or pain and lower back or hips as they complain about that, they should probably be evaluated for axial spondyloarthritis by a rheumatologist. You know there's also the pain that can come from the sacred iliac joints, which is where the pelvis and the spine meet. All that's tied in so if you have a younger Childhood is complaining of that type of pain. Don't think that it's all just growing pains. That's what was done with me when I was a kid. It's not growing pains. Get them into a rheumatologist, it's well worth. Even if the rheumatologist says Nah, it's not anything major. It's better to be safe than sorry. There's new medications out now that these young kids can take that can result in them having a completely different life than when I was diagnosed, you know, 36 years ago and none of these medications existed. Get the child and get yourself in whomever. 

Number two, you have a family history of Ankylosing Spondylitis. You had a grandma and aunt and uncle, you know, a second cousin. Anybody or all of them had Ankylosing Spondylitis, then and you're now experiencing some of the symptoms. Get yourself to a doctor as fast as possible to have it evaluated. You know, there is a certain genetic marker that the doctors look for. Everybody knows about the HLA-B27. But there are other numerous markers they look at. So your family may carry one or more of these markers. So again, if you have a relative with either Ankylosing Spondylitis, psoriatic arthritis, or arthritis related to any inflammatory bowel disease, you may have inherited these genes that puts you at a greater risk for Ankylosing Spondylitis. So again, the key is, if you're having the pain, get into a doctor and start to have it evaluated. 

Number three, you're young and you have unexplained pain in the heels, joints or chest or instead of back pain. Some patients with Ankylosing Spondylitis or non-radiographic first experience pain in the heels pain and stiffness and other joints like your wrist, ankles, and some patients rib bones are affected at the point where they meet the spine. That one is extremely painful and can cause tightness in your chest. I know some people that thought they were having anxiety attacks, when in reality, they were having a flare of that particular area, and it was constricting on their chest, and it can make it hard to breathe. So, talk to your doctor. These are very important items to be addressed if they happen to you. 

Number four, your pain may come and go but it gradually moving up your spine and it's getting worse. Well, we know Ankylosing Spondylitis is a chronic and progressive disease. There are some medications now that can slow that progressiveness of it, in some cases, maybe even put into a remission. For some people, many people, you know, it just depends on how everybody's dealing with the meds. But that doesn't mean that it's going to go away. And it doesn't mean that if that medication gets it under control, that then you stop taking the medication. I see a lot of people say, well, once I start taking it and it works, then I can quit, right? No, you're going to stay on it. That's what's that's what's helping you so although exercise or pain medications may help temporarily, the disease may gradually worsen. That's what we mean that you hope for the remission, but it can get worse, symptoms may come and go, but they won't stop completely. Often the pain and the inflammation they'll spread from the low back up the spine and if left untreated, you know, your vertebrae can fuse together, causing the forward curvature which is what I have, or the humpback appearance, which is called and I'm gonna butcher this so I apologize but it's called kyphosis, I think is how you say that which is that little hump at the top of the shoulder. 

And finally, Number five, you get relief from your symptoms by taking NSAIDS. At first people with ankylosing spondylitis will get symptomatic relief from common you know, like over the counter type of anti inflammatory drugs such as ibuprofen and naproxen. These drugs are called nsaids. They do not alter the disease. They do not stop the progression of the disease. They simply give you temporary relief by lowering some of the out of control inflammation in your body. Remember that you're not controlling the disease by taking nsaids, you're simply buying yourself a little bit of time. If your doctors think of AS, they may prescribe more advanced medications, these drugs target specific parts of the immune system. There are immune system components called cytokines that play a central role in inflammation, to in particular tumor necrosis factors, alpha, TNF, and interleukin 10s, which are targeted by modern biologic therapies. So these drugs may actually slow the progression of the disease, the biologic medications, so stuff like Humira, Enbrel, Cosentyx, Taltz, the list goes on, when your doctor prescribes those and remember, we're all looking for that magic bullet. We want anything to try and take that pain away. And so, when a doctor prescribes you a biologic, it may not work. Be prepared for that. It's not the end of the world; you may have an adverse reaction to it like any medication can be. So all that means is just go on to the next one. You didn't fail the medication, the medication didn't fail you. The medication either works or it doesn't work. You just go on to the next one if it doesn't work, because there's so many out there. It took me three times to find one that finally worked. I was not responding to the anti TNF drugs like Enbrel and Humira. They put me on Cosentyx boom that was great. You may be the exact opposite, not respond to Cosentyx but have a great reaction to Humira, Enbrel, or Remicade, or whatever you're put on. So, there isn't a way unfortunately at this time to say which one of the biologics will respond best to. So it's really a hit or miss. You just got to keep trying until you find the one that works. 

And then finally, talk about kind of How is AS diagnosed? Well, as many of you know, you'll go into the doctor, they will talk with you about some of your symptoms, some of the items, you're encountering family history. And then at that point, generally they'll want to look at an X ray. If inflammation can be seen via the X ray, that can lead them to help make a diagnosis at that point. If there isn't enough information showing on the X ray, they may ask to do a MRI on you, and thereby look even deeper into your system to see what's going on. An X ray and an MRI might not show either. Then what do you do? That's when you have the discussion about non-radiographic axial spondyloarthritis. Doctor, I'm having the pain I'm having this symptom, my back hurts. My chest hurts, my heels hurt, my knees hurt, and my spine hurts whatever. And at that point, doc says will but you're not showing any inflammation or very little, or you're not showing any fusing, I should say. And you say, well, that, to me sounds like non-radiographic, and you help them to help you come to the diagnosis; it's going to be best for you. I really hope everybody gets into see a doctor, they get a good doctor that listens to them, and really is empathetic understanding and helps you get the correct diagnosis that you need. That's such a game changer to finally have the diagnosis and know that you can now put together a plan of attack on how to go after the non-radiographic or go after the Ankylosing Spondylitis instead of just being in this area where you don't know what's going on. And you're just constantly trying to figure out the case of what you're happening, where you're constantly trying to just survive the pain and figure out what is wrong in your body. 

So I hope everybody has a great day. The special announcement I told you about is over on buy me a you can support The Ankylosing Spondylitis Podcast with donations or join as a member. And we had Sandra Clutterbuck join, she's from Australia. She's now going to be listed as a producer on the show in the show notes. So thank you, Sandra. I'm hoping that I can. I sent her an email, but I'm just waiting to hear back from her. And I hope she listened to the show enjoys it. And to everybody else out there that listens. Thank you so much. I really appreciate just everything I hear from you. And if you're in any of those far-flung countries, anywhere outside the United States or even in the United States, please go to and drop me a message. I really want to hear from everybody and know how you're doing what your story is, and look forward to maybe getting you on the show sometime to talk about your journey with getting diagnosed. So thank you and everybody have a wonderful week.

Producer – Sandra Clutterbuck

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