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April 5, 2020

Ankylosing Spondylitis - Myths and Facts

Ankylosing Spondylitis - Myths and Facts

Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope this day is finding everybody doing fantastic, healthy and hanging in there as we all across the globe deal with the Covid-19 epidemic that's going on. So with today's episode of first off, I wanted to thank everybody recently, like few days ago, the show crossed a total of 20,000 downloads in total and it's still climbing spread across 83 different countries. Talk about bringing the Ankylosing Spondylitis community together. You know, I keep hearing from people across different countries and organizations and groups that all deal with Ankylosing Spondylitis and so it's really really cool to see everybody together and interacting on the different Facebook forums and talking and trading stories about how AS is affecting them. With that said, Today, I thought it would talk about myths and facts related to Ankylosing Spondylitis.

You know, AS is a chronic condition, and it can be very difficult to explain to others, you know, as soon as you tell somebody, it's a autoimmune disease, they kind of maybe look at you not knowing what that means. Or if you tell them, it's a type of arthritis, they'll say, “Oh, yeah, my grandmother has arthritis.” Well, it's great that they're trying to relate, it's not exactly getting the point across to them that we hope to get across and so that's resulted in, you know, a lot of misconceptions about the disease and what the disease does to us. Heck, it even applies internally, because none of us get the disease the same. So what affects me generally probably doesn't affect anybody else, the same way to the same magnitude, and vice versa. They can have something that's very, very debilitating to them and it's really of no issue to me. So we gathered kind of some lists of myths, and I'll try to debunk those for you related to my Ankylosing Spondylitis that I hope you turn around and think about those myths and how they relate to your Ankylosing Spondylitis and how it may be beneficial or helpful when you try to explain what you're dealing with to others. 

Number One-Myth AS only affects your back. Well, we know that's not the case for everybody. When you talk about Ankylosing Spondylitis, they always talk about the main feature of as is that it affects your spine. And one of the main signs of the disease is inflammation of the joints between your spine and pelvis, you know, your sacroiliac joints, so inflammation can spread to the rest of your spine. It can go to lower back pain and stiffness or common symptoms, especially when you get up in the morning. But as is not confined to just your back though it can spread to other joints including shoulders, ribs, hips, knees, feet, or even, you know, up to 40% of people that have Ankylosing Spondylitis will get some form of iritis or, you know, issue of inflammation in the eyes. Now with my case, my Ankylosing Spondylitis came on extremely fast and hard when I was young in my hips. So by the time I was 21, and then 23, I had had hip replacements done. So I ended up with bilateral hip replacements by the age of 23. It wasn't until much later on that my spine started to become really affected. And now as I've aged, most of the Ankylosing Spondylitis has progressed up my spine, and now affects my neck. And so I take a biologic medicine, I take Cosentyx at this time, and I'm hoping that keeps it at bay from fusing my neck anymore than my neck already is fused. But I've got your classic Ankylosing Spondylitis posture. When I stand I'm hunched over and I'm looking at the ground in front of me not directly in front of me when I walk with my cane. So everybody's gonna be different. You may get it more pronounced in your ribs, or your knees or wherever. But think about that, as you explain it to somebody that will it does affect your spine and most likely will affect it at some point. There could be other areas of your body that are dramatically affected by the damage that Ankylosing Spondylitis does.

Number Two-myth young people don't get AS. Most people think of arthritis as something that occurs when you get old. But if you're young and have AS you're not in the minority there, AS is typically diagnosed between the ages of 15 and 30 and not as often after the age of 45. Me, I was diagnosed at age 14, with symptoms going back to when I was, oh 9-10 years old. By 14 I was finally diagnosed and that was 1984 that was pre internet, pre any way of really looking up or interacting with anybody. I live in a very small town and once I was diagnosed, it really didn't mean anything to me. It was just okay, here's what I have. Here's basically a heavy duty, ibuprofen, good luck, try to do some of these things to maintain your posture, and we'll just keep an eye on you was all that they could really do for rheumatology. You know, 36 years ago, there wasn't a whole lot more that was available to me. If you're diagnosed now, it’s a whole different ballgame. Not only can you learn from your Rheumatologist, what's going on, but you can take all that terminology, go home, sit down in front of your computer and get a fairly good idea of what a lot of it means real quick. Much, much quicker than was available when all we had were encyclopedias. So that's really good. But the main benefit for young people or anybody diagnosed now is the just large variety of medications that are available to try. There's all the DMARDs, the disease modifying anti-rheumatic disease modifiers and those are the biologics, which is the other name. So whether it be Humira, Enbrel, Cosentyx, Simponi, or Cimza, any of those, you can use to help keep it at bay. So if you're younger, and taking those medications, you may never get to the stages that many of us that were diagnosed, pre those medications are at now. So again, it's not an old person's disease, it's actually primarily diagnosed when you're younger.

Number Three-myth exercise makes it worse. Well, we know that's not the case. You know, if you have back pain, you might naturally think oh my gosh, my back hurts, I can't do anything, my back heel up and I need to avoid any type of activity. But that's probably the wrong way to handle it. What you may consider doing is not doing any type of heavy lifting, but stretching, yoga, things of that nature. Just walking, all of that can be good and help you to loosen up limber up, and better take on the day with your Ankylosing Spondylitis. I've even seen some people that maybe they can't do heavy weights don't want to do heavy weights, whatever. They might exercise with bags of canned goods in their house. Whatever makes it easiest for you and most beneficial for you to do any type of physical activity. Do it. But remember, before starting any type of new exercise; make sure to talk with your doctor about it. Ask him or her what you should be considering doing what are best suited to your ankylosing spondylitis conditions. also asked me to speak with a physical therapist or a personal trainer that is familiar with ankylosing spondylitis. Depending on the location you live, it may be fairly easy to bring in either one or both of those people to help you look at things like strength training, cardio, work, just walking in general swimming, any of that that can help you to, again, fight back against your body's natural inclination to stiffen up and seize up. The more you do early on, the better you'll do as you age, or hopefully, hopefully between the medications and the exercise, it should pay off hopefully dividends for you far into the future. 

Number Four-myth a fused back and severe disability are inevitable. We all know that Ankylosing Spondylitis doesn't progress the same and everyone at the same rate at the same way with the same condition. With that said, there's no reason to think that you are going to end up with a fuse back and, you know, possibly on severe disability, you know, it's not inevitable. It's what I'm trying to say the more work you do, as I mentioned earlier with exercise and the medications that are available now, the chances are you may be able to stave off some of that fuse back or severe disability doesn't mean everybody's going to be successful at it again as it attacks it. Everybody differently. You know, many people will have periodic episodes of mild, you know, tuesd, very severe inflammation, stiffness or back pain, it's when you have that repeated attack of inflammation that you can have, the vertebrae start to fuse. Luckily now again, with many of the modern medications, some of those real bad bouts of inflammation can be kept at bay, and maybe make the fusing that you encounter much less severe. But if it does happen, and the fusing does take place, it can severely limit your movement and make it impossible to keep your spine straight. That's where I'm at fusion in your rib cage can reduce lung capacity and also make it hard to breathe. You know, that's one area I've been lucky. I've regularly done deep breathing exercises every morning when I get up for a minute, minute and a half, not very long, but I do in the morning and I try to do them in the evening as well. And I've just had little to no problems with lung capacity, unlike many others that I feel bad for that get it really severe in their lungs and the rib pain. But, you know, again, it doesn't happen to everybody. Many people with AS will end up having much milder symptoms that can be managed and not present a whole lot of long-term lifestyle or occupational changes. And finally, about 1% of people with ankylosing spondylitis gets what's known as disease burnout and enter long term remission. 

Number Five-myth AS is rare. Well, you know, everybody is probably heard of Multiple Sclerosis, Cystic Fibrosis, but what they don't realize is that neither of those two diseases for example, affect as many people as Ankylosing Spondylitis does, worldwide, it’s estemated about 1 in 200 adults have AS. It's now estimated that there are about 2.7 million people in the United States with Spondyloarthritis, of which Ankylosing Spondylitis is the most common. So it's not as rare as people think. And, we need to get the story out there better. We need to talk to people and educate people about this whenever the opportunity presents itself to continue to tell the story about what this is, and hopefully more researches on the way into different symptoms and remedies for a Ankylosing Spondylitis and all of the spinal arthritis. 

And finally, Myth number Six-there's nothing I can do about it. Anyway, we all know, Ankylosing Spondylitis is chronic and progressive. But that doesn't mean there's not anything you can do about it. The first step to do is make sure that with your rheumatologist you build an actionable plan as to how you're going to tackle Ankylosing Spondylitis. Personalized your treatment plan for you, the short-term goal you want to look at is to ease symptoms. And then long-term goal is maybe to minimize or prevent disability. Well, there are many medication options depending on your particular symptoms. Some of them are, as I mentioned earlier, DMARDS disease modifying anti-rhumatic drugs, you know, that's helped to control disease progression, non-steroidal anti inflammatory drugs, NSAIDs. This is to help lessen inflammation on a day-by-day basis and prevent some of the pain that goes along with that. Corticosteroids are to again help to fight inflammation, and then different biologic agents to relieve symptoms and prevent damage. Joint Replacement Surgery is an option for severely damaged joints. That's me, both hips were so severely damaged from the inflammation that I ended up having both left and right hip replacements done when I was very young. My left hip was done when I was 21. My right hip was done when I was 23. My right hip is now 27 years old, still going strong. When I went to see the doctor a few months ago, the surgeon that did it 27 years ago, he looked at it and said, I did this, we kind of laughed a little bit and he says, looks good. There's still a lot of cushioning left in there he goes, unless there's any major problem or you fall in the wintertime or damage it somehow he said, instead of coming back in a year, I'd suggest you come back in two years. That was fantastic. My left hip looks okay. But it's also been done three times, and has created its own unique sets of problems. So there is again, joint replacement surgery. The newer surgery option for hip replacement, as an example, is so much different than the one I did. It should not be something that scares people off. I encourage people if they're at that point where they need hip replacement to really consider it. There's regular exercise, you know, that can build muscle, which can help support your joints and keep you flexible and thereby help reduce pain exercise can also help you maintain a healthy weight. That's my issue is I'm carrying too much weight for my hips, too much weight for me. So it's just something I keep trying to fight. It's also important to be mindful of your posture when sitting as well as standing. That's something that's been a challenge for me. I'll be honest with you; I don't do that very well. And it's probably something that's contributed to my hunched over stance, along with the fusing of the spine. And then lastly, be sure to keep your doctor informed about your symptoms as they change. You're your best advocate, you are the one that's going to be able to best go in and tell your doctor on a day-by-day basis what you're dealing with. That way that doctor will know exactly how you're feeling. Don't be afraid to stand up for yourself and tell your doctor today might be a good day when I'm seeing you today might not be a bad day. But this is an abnormality normally I feel this way this way or that way. That's why in the last episode, we talked about the chronic insights app and how that can help you to track on Day by day basis or however often you want to use it how you're feeling so that you can share that with your doctor. And they can see a much better outlay or timeline of how you do. 

Again, you know, the whole takeaway of this is, it's hard to predict what a S is going to do to you. There is no, here's the one way everybody's going to react that doesn't exist. So one thing that is certain is that it will require lifelong management of of Ankylosing Spondylitis of this disease. So get good medical care if available to you, exercise, medications are key to managing the condition. And then learning all you can about this so that you can better discuss with your doctor and tell them what is taking place can only benefit you in the long run again, the more you know, and the more you're better able to communicate with your doctors, the better they can work with you on whatever personalized treatment plan you need. So I wish everybody luck. Take care, and thank you for listening. Y'all have a great day.