Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. My name is Jayson Sacco and I'm your host and I hope everybody is doing fantastic. I wanted to go over a couple of emails that I got. Both of them are really cool. The first one is from Alex Levine and Alex has a fitness channel and in the shownotes I’ll have a link to his website. And in it, he wrote to me, 

“Hi, Jayson, I just wanted to reach out and tell you that I enjoy the podcast. I have AS and I work as a personal trainer specializing in training others with AS. I just did an event with the Spondylitis Association of America, discussing health and fitness. It's nice to connect with others who are sharing similar experiences, keep on doing the good work.” 

And just as I said, I'll have a link to both Alex's website in the show notes, as well as his Facebook page where you can find that event that he did with the Spondylitis Association of America. It’s a very good watch. The second message that I got was from a listener in the Faroe Islands. I hadn't been overly familiar with this country. It's basically located right in between Norway and Iceland and is part of Denmark but it's also I think its own country is the way they they officially look at themselves. But anyway, it's called the Faroe Islands. And I had saw some downloads coming in from there and I was like, that is really cool. I got this short little email but it was really fantastic to get and it was from a gentleman name, I think I'm saying this right Terji Beder, yeah, I think is how you say it. And I apologize for butchering that. And it says,

“Greetings from the Faroe Islands. I just wanted to thank you for hosting this podcast. I feel like there's a lot of information, content missing on AS on the Internet, or really anywhere. This is a great contribution with great quality. I love how you can make so many episodes and still managed to keep the topics original and with not much repetition. Great work. Sincerely, Terji.

Thank you so much. It's listeniers like you and everybody else that I hear from that I do this. And I really again, I love hearing from everybody. So if you're out there, please send me messages. I'll most likely unless you tell me not to read them on the next episode I read and then I respond back to everybody. I really enjoy receiving all these messages. It's just fantastic. So with that said, let's do a couple of quick housekeeping things, please go to spondypodcast.com, where you can sign up for the newsletter or use the Contact feature to reach out to me. There's also a section in there where you can go to access if you want to get a Spondypodcast t shirt or a couple of other items that are used to help support the show, or even just going to buy me a coffee calm where you'll find a link on the website to help support the show. Everybody has done that so far. Thank you again so much and I really appreciate it. 

Now on to todays show. I received an email today that was a solicitation for a website I belong to, and the title of it was, You Are Enough. And I saw that and I looked at it and it said, being you is more than enough. And I started thinking about that, as you know, we have this chronic illness, this chronic disease. There's many, many times that we all look and say, why me, I miss what I could do. You know, I really am tired when I tried to clean the house for the day. I have done every one of those and so I'm not picking any one particular person. But I started thinking and I said, is that really fair to us? Nobody I've ever talked to with Ankylosing Spondylitis has ever said, I asked to get Ankylosing Spondylitis. It's like any disease that somebody has, It just is what it is. And you have to work to overcome and move around it. So I started thinking a little bit you know, they had a couple of quotes that I thought were really cool. In this website is myspondylitisteam.com. I'll have a link in the show notes and after years of feeling like I need to be better, stronger, healthier and in control, I now know I am enough and that was done kind of anonymously by a member of one of the spondylitis teams. And I started thinking about that. And I said, you know, there's really a lot of truth to that and they started kind of looking around and there's a website, the autoimmuneinstitute.org. They had a interesting kind of take on this of coping with a chronic illness. And they started off by writing, when your chronic illness has put you through the wringer in terms of doctor and hospital visits, lab tests, imaging, medications and other treatments. It's only natural to feel defeated. And that I think is even compounded for many of us in the Axial Spondyloarthritis community. Because somebody might go through the whole rigor as the article says, and still never be diagnosed. They may walk away with a doctor saying, I'm not sure what you have or it might be fibro or it might be this or the one that really gets to me is, “I don't see any inflammation or fusing in your x rays, so no, you don't have Ankylosing Spondylitis?” Well, that's true. You probably don't have Ankylosing Spondylitis. What you may very well have is Non-radiographic Axial Spondyloarthritis, where you have all of the pain, the stiffness, everything, you just don't have any shown fusing. And for some reason, that seems to get looked over quite a bit. And I hope as more and more people hear the shows, and are able to better advocates for themselves, they're better able to lead doctors to say, you know, I never thought of non-radiographic axial spondyloarthritis. Let's do a little more digging, and you end up with a diagnosis where you can finally get a treatment plan that is best for you. The article goes on to say all of us have been there at some point when you almost want to throw your hands in the air and let the quicksand You wonder, I've been there and spent years attempting to manage the symptoms on my own, we're getting sicker and sicker. The author says, “I was grieving for the health I used to have, unsure of what to do.” So the author is really talking about what could be applicable to any of us, as we deal with these chronic illnesses in this case, Axial Spondyloarthritis, we all look for the remedy, can we fix it? You know, I see everything out there from, well, can I just take supplements? Can I just eat healthy? Can I just you know, skip all medications and only take them when they're applicable to my particular flare time or whatever? There’s always an outlier that that works for them. And I occasionally see them come on to the different forums and say, well, I did this so you can do this, treating this disease is kind of a one size fits all and that's really a mistake. It doesn't work that way. You have to find find what works best for you. I personally am a fan of biologics; I think they've helped me tremendously. Not everybody else is, if you choose not to take them, that's entirely up to you. And you are absolutely within your rights as a patient to choose what you do or don't take. I will never say you're wrong for your particular views. But what I'll also do is tell you not to tell you that your views are applicable to what everybody else should believe. So just remember, as you move through these chronic illnesses, you want to look at what's best for you and understand, you know, we're all different in the way we approach the treatment of this disease. We're not alone. We're all in this together. So it's as the author goes on to, to discuss. “It's an odd mental space to be in, hoping you're suddenly going to get better. We'll either prtending nothing is wrong, or deciding your life is over and you'll die young.”

You want to remember these few things, you don't know everything. And I don't say that in a bad way. I don't know everything. I've never met anybody that knows everything. No matter what challenges you're experiencing in your illness, there's always something out there. There's always a community, doctor, a therapist, something that you have not tapped into yet, maybe you don't have the insurance if you're in the United States or in any country. And until you get that insurance in place, you're not able to tap into some particular resource. But once you get it, then your best bet is to tap into that resource and take full advantage of all it can do to help you. So how you perceive your situation is a direct result of what you know. So when you start to challenge what you know, asking why and how at every intersection, new worlds will open up and that's really true and that you know. You might have your mind dead set that I'm not going to take biologics because they cause cancer. I see a lot of people say this, that they do do this or they do that. And we always say, No, those are potential side effects. New research has also shown that they don't do this or they don't do that, unless you meet certain unique conditions, have certain family medical histories. And I'm using biologics just because that's the simple one for me to recall right off the bat. But that's really applicable to all medications. So you might be adverse to some or all of them. And you find out in talking with people that they've had really good responses to them, and there's far more positive than negatives and you change your mind and say, I'll try this might be somebody like me who doesn't eat the best and who I really need to eat much better and I need to open myself up to and not be so let's face it so lazy to not cook the way I need to be and not fall back on the easy foods that I eat. They taste good for a reason, because they're generally bad for you. So, just realize you're also not alone. You know, whether you're running the diagnosis marathon, trying to get all the doctors to agree as to what's going on with you trying to juggle a complex set of symptoms. There's a community of us all out there who have situations that are similar to yours. And we've all probably been where you're at now as you move through the diagnosis process or the early stages of the disease. And, again, well, we're all going to be different. 

We can all bring some perspective to what you're dealing with and at least be empathetic and understanding to what you're dealing with. You know, we all feel alone at times. But we can either experience this loneliness and isolation or in unity. It's a matter of accessing these connections. And for whatever reason, Ankylosing Spondylitis is a very easy disease to become lonely with, to isolate yourself with, I've done it. In a lot of cases, I'm still doing it. And I encourage you get out, be involved, you might not be able to go out three or four nights a week, you might only be able to go out one night a week, and then you have to take the next five or six, seven nights to recover from that, that's fine. Take that one night out, enjoy yourself, don't overdo it, but enjoy yourself. And then you cannot be so isolated, you can be accessible to other people and other people can be accessible to you. And you can keep that connection going. You can accept your current situation without giving up and that's something that really took me a long time to come to terms with. Everybody's in various stages of accepting this disease. Accepting is allowing yourself to be where you are, even if that place is dark. This is how I feel and I'm dealing with it the best I can are two things that you're entirely allowed to say, experience, and feel when you're not craving the life you used to have, or resigning yourself to a future of pain and discomfort, you'll be better able to take small steps forward, and really is the author indicates that's what it is. Take that small step forward, that little baby step to move each. Maybe it's each day you do one thing different. Maybe it's each month you do one thing different, whatever the timeframe is for you try something different to come out of your shell, to be more outgoing with others to interact with others, and not feel so isolated, not feel so alone. All of that's important for your mental health and for you to be the best person you can be. And that doesn't matter whether you're single, married in a relationship, whatever. Isolation can be very damaging to you to relationships. So I encourage you to please make sure whatever the timeframe is to reach out and interact with people. 

They did a great job and five things to do when you feel like giving up. And I'll go through these, 

Number One, Find Joy, you know, go on to say it can seem impossible to remember what it's like to feel good, I can certainly understand that. And besides the pain and other debilitating issues, you're under constant pressure by the world around you and yourself to get better. You might have a spouse that doesn't understand or doesn't show any desire to understand, parents, employment, it's all out there that say, well just take some aspirin and you'll feel better because they have no clue as to what we're dealing with at any given time. So there's things you can do to try and remove some of the stress of being sick, which is enough, you know, to knock you down at any given time, but you can try to move your mind into a more positive space. Now, that’s not just someone that tells you well think positive, be positive, no, but if you try to think of a positive thing any given day, it can help as you move forward. So weaving these falling practices into your daily life can regenerate a sense of hope and peace. Resurface a happy memory, think about something that you did in the past that really made you happy, maybe was an event you like to do a television show you like to watch a person you like to talk to. If it's any one of those and you haven't done any of it, you know, if you haven't watched that show in a while, haven't talked to that person. Do it, pick up the phone and call them. Maybe you'll find out that person hasn't called you because they've kind of been afraid and not sure how to approach your illness. Call them up, talk with them. Talk about the illness; don't talk about the illness, but talk to them. Let them know you're still alive. Do something creative and tactile. Maybe you like to work with wood. Maybe you like to just go for a walk. I started doing this podcast. There's all sorts of different things paint, paint, a building, paint a picture, your choice. I don't care. Do whatever makes you happy, could be just doing a puzzle, which is great because we all talk about dealing with the brain fog. Puzzles are great ways to keep that brain thinking,. Keep a gratitude jar, doing so write down one good thing that's happened to you during the day, the week, whatever, put it in there and, you know, keep focusing on what those one good things are, each day or each week. And then occasionally, when you sit down to watch TV, or that jar out in your lap, and read through the different things that you were grateful for. So great, very simple way to just remind yourself of the things that you do good at any given day. Find a meditation practice that works for you. This is big. I've discussed it before I do Transcendental Meditation, doesn't mean that's right for everybody. I am a person that would have easily told you meditation as a joke, but since I had done that, I think it's a fantastic practice. There's lots of different it available on YouTube. So do some meditation, the worst it's going to do is not help you and you move on, it's not going to hurt you the best it's going to do is you find a new practice to help relieve some of your everyday stress. Then finally engage in acts of kindness. You know, if you're walking out to your car and you see a senior, we're gonna put groceries in their car, a mom with kids, a disabled person offered to help them, you going out to grocery stores example and you see somebody self bagging their groceries, offer to help them even as simple as somebody is trying to get something off of a shelf, offered, help them if you can. It's little acts of kindness that going to make you feel better, and be helpful to that person in need, and hopefully make them feel better. 

Number Two, Keep a Symptom Journal. This is a powerful tool that can help you recognize patterns in your health. And we've talked about this. There's the app for your phone called Chronic Insights. And I did an interview with the creator of that app and his name is James Allen. James has Ankylosing Spondylitis. So he's very aware of what we all go through. This app allows you to go in, enter in your condition, enter in, how you're feeling that day where the pain is, and turns out to be a great way to then share that with your doctor to give them a better overall understanding of how you're doing at any given time. On top of the journal, you can enter in if it's just paper, you can put you know, how do you feel? When did the pain or the issue you're dealing with start? Where were you when it started? Was there a certain thing you were doing that maybe triggered it to start and all those can be in there to, again, track your progress on any given day, week month, and see how you feel through the year. 

Number Three, Partner Up. This one is really easy to do now with social media, find 2,3,4 people that have Ankylosing Spondylitis, or a condition that you're dealing with and should have a message, check in with them every day, ask them to check in with you just to make sure everybody is doing well. As I've done the show, and I've talked with people, all my guests, I don't check in with regularly. But there are some that I check in more often than others. And it's really great. I bounce ideas off of them; they bounce ideas off of me. And we sometimes just check in our venting spot to listen to them feeling like having a bad day and they want to tell you how bad they're feeling. And they just need somebody to listen, that's not their spouse, because their spouse maybe is sick of hearing about it. So there's a lot of ways that you can be there for somebody else. You know, just try reaching out to somebody privately and see if you guys can connect and help each other out. You know, and there's all sorts of groups as you know on Facebook and Instagram and and all over the place. Shoot me a message through Facebook or Instagram and you know, again, I'm happy to hear from you. I'm happy to be there if you need some help. 

Number Four, Share Your Story. This is a great thing to do. You know whether it be sharing your story via coming on to The Ankylosing Spondylitis Podcast to talk about your Ankylosing Spondylitis or non radiographic journey, whether it be going to a website like ankylosingspondylitis.net and in the section they have there you can enter in your biography to talk about what you've dealt with. Maybe it's starting a blog; there are all sorts of things that are available to you to share your story about your journey with axial spondyloarthritis. Any part of sharing can be tough for some folks, just by stepping out sharing it, whether it be on a podcast like this, maybe even creating your own podcast on on a topic. All of it helps you and helps the people that listen to you. So don't hesitate to to step out of your comfort zone, do something that you aren't familiar with. If you want to start a podcast, let me know, I'll send you the resources of the different tools that I think will help get you up and running really quick. And you'd be surprised there's a lot of them that are free. So...

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 spondypodcast.com, 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 spondypodcast.com 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 spondypodcast.com 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 coffee.com 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 spondypodcast.com 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

Healthline article that episode is based upon - https://www.healthline.com/health/ankylosing-spondylitis/warning-signs

Help support the show - https://www.buymeacoffee.com/ASpodcast

T-Shirts - https://teespring.com/stores/spondypodcast

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. I'm very excited to have on this guest this week. I think it's awesome to bring in fellow people with Ankylosing Spondylitis to not only hear their story, but also learn from them about what they're doing to deal with the pain deal with Ankylosing Spondylitis. And not feel so isolated and alone, like a lot of us can, because there's so few of us in the day to day life that you might meet. So, this guest I think she's really special. She has a Instagram page that we'll talk about in a little bit as well. But her name is Julie coversyl. Julie, welcome to the show.

Julie Caviezel:

Thank you for having me, Jayson.

Jayson Sacco:

I want to touch base on a couple things. You have Ankylosing Spondylitis and have been diagnosed, but you went through a long journey to get that diagnosis. Can you talk a little bit about that? So that I think it's like I said, I think it's really important for women To hear other's stories to know that they're not alone and that there's sometimes you have to be their own best advocate for this disease.

Julie Caviezel:

Yes, definitely. For me in particular, it was a long journey, and over 20 years of trying to find a doctor who would listen, and a lot of male doctors, especially even female, would just kind of dismiss me as being overthinking it. I heard my primary care doctor of yours said, you just think too much. You just need to you know, not not worry so much. I think it's all up in your head and I heard the, the phrase I think it's more psychological than physiological all your blood work looks great. There's nothing wrong with you. You're in perfect health and when you as a patient Place your trust in your doctor and you're seeking medical advice. And you keep hearing that over and over for years, it really starts to mess with your head and make you feel like there's something wrong with you even though you know in your heart of hearts, that it's not psychological. But you almost start believing them because they're the expert. They should know. Right? And I think it's really important for everyone and I would say women, especially to listen to our bodies, and don't be dismissed. Don't take no for an answer. If you feel in your gut that there's something wrong, keep pursuing it. And my parents call me a pitbull because I tend to be tenacious and very loyal and to the point where I would probably lay down my life for a friend And those are breed characteristics. And with that, I also tend to not give up. And, but there were times over the 20 some years where I felt like giving up and I did, I would for a little bit, whether it be like a few months or a year or so and then I'd kind of try to find another specialist and it just it took a long time. And it wasn't until my symptoms got really severe that I was taking more seriously. And I lucked out I go to really cool clinic up in Seattle, it's called the poly clinic, I highly recommend it. It's doctor owned, it's there's not a lot of bureaucracy, it's like a pure like they just really want to help people. It's kind of the best of the best. And that's where I have found my specialists cardiology dermatology because I've had melanoma. I do have very early stages of coronary artery disease. as well and so now my rheumatologist is there so? Yeah, I mean, it took finding him who he sat there and he saw my x rays after he ordered them which no other doctor had. which, to me the golden rule that I found out is when you're testing for abs, it's not just the blood test, your doctors are also supposed to order the X ray. And no other doctor had done the X ray. They'd only done the blood test and for me and my family, my mom has it and other people on her family habit. They all test positive for that mutation. I don't.

Jayson Sacco:

So your mom and others that have Ankylosing Spondylitis are HLA b 27 positive. Your blood work was coming back for you being negative, negative. 

Julie Caviezel:

Uh huh. 

Jayson Sacco:

Oh, okay. So hence the doctors start. As a woman, the doctors start not ordering x rays. 

Julie Caviezel:

Yep. 

Jayson Sacco:

See, that's really a disservice to you.

Julie Caviezel:

Oh, for sure. 

Jayson Sacco:

So, where did your pain start?

Julie Caviezel:

My neck early on, probably about 18 or 19 years old start maybe even younger than that. I couldn't, I noticed. Just working out I couldn't do sit ups like everyone else could it would hurt really badly. And I'd have to kind of cradle my neck and modify and that was at a pretty young age, and then it just kind of got worse and worse. I was told I had what looked like a C curve in my spine at one point by a chiropractor that was in my early 20s, lower back pain, you know, progressing on and yeah, just kind of, then more and more symptoms would appear. My neck is always been a constant. I had a horseback riding accident about 10 years ago and I had a compression fracture in my L five in my spine. And I think that must have maybe triggered some of the pain down in my head since a sacroiliac region and that's what showed up on the X ray done a year and a half ago.

Jayson Sacco:

So when that X ray was done a year and a half ago, that was say 18 ish 19 is yours since symptoms had kind of been noticeable for you. 

Julie Caviezel:

Yeah. 

Jayson Sacco:

What did it look like? Were you seeing just inflammation or fusing or both?

Julie Caviezel:

So he I rheumatologist showed it to me and he said right there he pointed to the fakro iliac joint and the hips and he said that's, that's a yes. And so I I didn't ask a lot of questions. It does. I don't think it's using yet but I don't know for sure. I haven't gone I've gone back once because he really wants me to go on Humira. And that's a whole other topic. For a while. I think I had my head in the sand and wanted to be in kind of like denial about it. So hey, I got my diagnosis great, I'm validated but I don't want to focus on it right now. So, that being said, I know there is joint damage and inflammation around there. He also did a kind of the ultrasound where he goes almost head to toe and looks at joints and said that I had basically like tennis elbow and all my joints. So that was another tool. He used to diagnose me. So he he used some sort of an ultrasound to measure my levels of inflammation in my joints and determined that I have like a pretty high number. So that was also a diagnostic tool he used but he's the first specialist I've been to, I've gone to two other supposedly renowned rheumatologists over the years and they they just would sit and talk to me and hold my hands. And then put me on like, try put me on Neurontin and tell me, I had fibromyalgia. 

Jayson Sacco:

And what you said was interesting, and I The reason I asked about where your pain started, you had no idea I was gonna ask that this week's episode I'm doing that come out tomorrow, I noticed a fact from the Spondylitis Association of America that said that a lot of women's pain starts in their neck, not their lower back, and kind of works down in reverse. So it's true, you almost fit that your classic in that you've had the neck pain, but you don't have the gene which really, I think people need to pull back on that you've got, you know, there's too much focus, I think, put on that HLA b 27, that you do or don't have it.

Julie Caviezel:

A lot of false positives and false negatives in any genetic testing. So it could be that I just, it's a false negative Who knows? 

Jayson Sacco:

Yeah, so I, I think you've got to look in and now with a much more wider understanding of non-radiographic axial spondyloarthritis. You really as a doctor, have to look at the whole picture and let's face it, osteoarthritis, rhuematoid arthritis; those are the doctors bread and butter. They're going to see 15 people with rheumatoid arthritis or osteoarthritis, for every one they see with ankylosing spondylitis, I get that. So they're going to be more in tune with those other conditions. I know that. And that's why I have to be more of an advocate more of a knowledge base for the doctor. The greatest thing now is all these doctors have these email systems. And I've uploaded numerous files to her system on Ankylosing Spondylitis to say, just in case you haven't seen this, here you go. Now she wants to delete it that's on her, but I've at least provided it to her.

Julie Caviezel:

Right. I know even my primary care doc admitted to me, I mean, was pre COVID. So it's all a blur, right? But my last appointment with her she said, be honest with you. I just there isn't much more information on AS now than there was 30 years ago. It's just not really studied. There's not a lot of it's updated.

Jayson Sacco:

I don't agree with that. I think there might be some textbooks that haven't been updated as much. You know, the whole axial spondyloarthritis family, I think is much more in the news. Now because of the ability for biologics to be used, right? From the pharmaceutical company, they have a vested interest to provide information on how they can or can't be of assistance using the biologics. From the doctor's standpoint, the biologics are advertised on TV. So you and I, as patients, we may be going in there and ask you about them. So they need to have some minimal understanding of what they're talking about. So good or bad, the cats out of the bag. So they have to have some basic understanding and it works. For example, I'm on Cosentyx, which works with psoriatic arthritis as well. There's Enbrel, which, you know, you've got different commercials on featuring different people. Everything is different times in different places that it's advertised. But I do think that that is good for the disease because it makes the doctors have to understand it better that they have to kind of go back to the books and look at it and say, Alright, I have Jayson that's got Ankylosing Spondylitis, I've got Julie, that I thought had fibro, but she keeps coming back and none of the treatments for fibro are helping, what am I missing? Hmm, Oh, she hasn't had an X ray in 15 years, or she's never had an X ray by me, or she had an X ray and it was no middle of the road. I need to order an MRI or whatever. You know, whatever the issues are, they need to dig deeper. And I don't know if they're capable of doing that at this point. And that's why I've been a huge advocate of being your own advocate. I had a gentleman on the show. Well, I don't know. 8-10 episodes ago, 10-12 episodes ago. James Allen, who came up with an app for your phone called Chronic Insights. He's out of England, and he has Ankylosing Spondylitis. Well, this app is basically designed to allow you, or any of the person that uses it to go in and input where they're having pain. And I think for a small fee, either on a yearly or monthly basis, remember, you can track numerous conditions, as well as create an exportable document for your doctor to then look at because I don't know about you, but every time I go to the doctor, they say, here's a piece of paper. Tell me how you've been feeling for the last five to seven days. And yeah, invariably, those last five to seven days? I've felt great, 

Julie Caviezel:

Or, yeah, and like you circle the number and or it's a smiley face and then a sap. Yeah,

Jayson Sacco:

Exactly, where's the, you know, the I feel like* bleep* three days a week and I feel mildly okay. You know, 12 days in a month and it just doesn’t, I don't think it gives them enough information. So someone like you goes through a 20 year period of trying to convince them that there's something wrong. And I get so aggravated about this because my experience was completely opposite. I was 14 years old. I had been in pain for four years was told over and over it was growing pains. Go to a chiropractor, go to a chiropractor. Finally, he was a family friend, super nice guy. And he finally said, Look, he goes, everything I've done, should have fixed it. He goes, there's something else going on in here. We need to get this looked at. So 14 years old, I can't even drive yet. My mom takes me down to a rheumatologist appointment. We're sitting there in the office. in comes the rheumatologist. He says, stand up, turn around. He looks at my hips a little bit. Now he also said some misleading information but which later change but not not because he was trying to be misleading as was because he was just saying what was thought of at the time. He says squeeze my hand So he put two of his fingers in my hands and squeeze those. Now I know he was checking to see if I had arthritis in my hands. He comes back and he says, You have Ankylosing Spondylitis? And I said, What's that? And he goes, Well, he goes, now I'm going to do the X rays, the bloodwork and everything else to verify my diagnosis of you. And I said, Okay, when got x rays, bloodwork, HLA b, 27, positive. Now, again, this is going back 36 years ago, so that was the main genetic marker. And he just goes, boom, boom, boom, here's what you got. See in six months. And I thought everybody got that. You go to the doctor, they tell you that Ankylosing Spondylitis to give you an end set out you go wasn't until I started getting involved in the community a decade ago, on these Facebook forums, and starting to hear from people like you said, Oh, no, I've been fighting my doctors for 20 years. And I'm like, What in the hell That's crazy. 

Julie Caviezel:

Do you find in your experience in the last 10 years of connecting with other is patient that it isn't the majority of women who tend to be dismissed by their doctors. Do you find it? Yeah, she, yeah, I, I feel like doctors in general, when a male complains of pain, they take it seriously, which I find kind of funny because I think women in general have pretty high tolerance of pain and being that we birth large babies. And so I would always say like, they'd asked on a scale of one to 10, especially once I've had three kids, and they're all like nine to 10 pound babies,

coming out, right, let's be real, and they'd say, like, on a scale of one to 10 how's your pain? I was like, well, 10 childbirth to me, and so I mean, maybe like a six or seven or you know, but I do feel like there is something to be said. And I don't know how to change that. Maybe it's just having these conversations and putting it out there and hopefully more healthcare partners will take women seriously. I don't know what it is about it becoming a sexist thing or, you know, discriminatory to women.

Jayson Sacco:

You know, I think it goes back to the original way this disease was looked at. And that if you, if you turn it back, I did it. Just out of curiosity. I'm a history major. So I did a history of a s and in looking back at it, they started off in the 16,17, 1800’s. They only looked at male cadavers. So, if I'm only looking at male cadavers, then I'm only going to see this disease in men. Okay. So fast forward that through a few hundred years of medical knowledge, and if you don't have any women in the studies, and something I learned from a gentleman that used to be the president of the Canadian spondylitis Association, is that when you look at the overall axial spondyloarthritis, that includes both non radiographic and as about two thirds of the People with AS are men. One third are women that that's not exact, but it's close. About two thirds of the non-radiographic are women and one third are men. So when you look at the axial spondyloarthritis umbrella, we're about one to one, it's about on par. Women just present different. And because they present different, and the doctors want to a, let's face it, they want to get you out of the office because they need to turn over that table. Yeah, they do want to help you. I don't want to make it seem like they don't want to help you. 

Julie Caviezel:

Yeah, I think there's maybe a burnout and tired of the carousel.

Jayson Sacco:

Yeah. And they have to do it in the fastest, most expedient way. And they know that if I diagnose you with if I diagnose you with fibro first and everything works, then I hit the nail on the head, because exactly because you weren't showing the HLA gene. The issue was that your family Is and so that was the missing piece. I just, I get very aggravated by it because man or woman, nobody should have to suffer with this damn disease.

Julie Caviezel:

Yeah and it's also frustrating to me because I try not to think about it, but just in our conversation, it obviously brings it up. But I wonder sometimes if I had been diagnosed earlier would I have had as much joint damage and pain and maybe my life would have been different. Who knows, I mean, it can be, especially when you're not diagnosed and you're kind of going down a rabbit hole of sorts and you're just in chronic pain and fatigue and you don't know what is wrong and you feel like you're fighting against your body. Like I liken it to walking in a wind tunnel against the wind and it's just this extremely frustrating, fatiguing, feeling that you're fighting all the time. It affects your relationships. I've lost friends because I've gone through periods It's where I've been so anxious and so irritable and just not myself. And so yeah, I mean, it definitely affects your entire existence. And I mean, I guess there's no point to do the whole what ifs, but it is.

Jayson Sacco:

Yeah, everything can derive a what if but I completely agree that I never knew if I was an anxious person or, and or have the as caused me to be an anxious person, but my anxiety level was through the roof. Sometimes bordering on just almost paranoia type levels of anxiety. Yeah. And I went unmedicated and it created issues. I've lost marriages because of it, friends, and I correct some of that and that's the next topic that we're going to talk about. I'm going to skip over the biologics for a minute. I am a huge proponent of them. But on top of biologics, there's also another way that you can help with things like sleep, pain, the anxiety that we discussed. And that's the use of cannabis. Yes. And you are a big proponent of the use of cannabis, which is one of the things I as am I, I think it's ridiculous that it's not legal in all 50 states and I, I use it for sleep not regularly I I don't use it near as much as I think might be fun, but it is a fantastic for me, anxiety reliever as well as a sleep inducer.

Julie Caviezel:

Mm hmm. For sure.

Jayson Sacco:

So how did you get into use of it?

Julie Caviezel:

Well, gosh, I mean, in high school, I didn't recreationally as more of a rebellious teen thing you know, and that was before it was legal in our state in Washington. So you would just you know, go a few bucks in on it with some friends in a ziplock baggie and you don't know what you're going to get right. And what I love fast forward to me as an adult, and you know, and then there was a period for maybe, I don't know, 15-20 years where I didn't use it at all, but once it became legal in our state, I actually had friends who own they own a series of high end, pot shops, retail, recreational pot shops, and it just really started to interest me the science...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic, It's been just amazing weather here as we wrap up the summer, can't believe I'm saying that.  I am look forward to moving into the fall. I want to take care of a couple of housekeeping things before we get started. If I could get everyone to head over to spondypodcast.com and sign up for the Whenever I Feel Like Sending It Out newsletter, I would really appreciate that. Also, whatever you're listening to on this, whether it be Google podcasts, Apple podcasts, Spotify, whatever, if you can hit the subscribe button so that the show gets delivered right directly to you each time they're published. That would really mean a lot. And then last while you're out there on spondypodcast.com, if you could leave a review for the show. Wow, that would really mean a lot to me. I don't care if you leave it on Apple or Podchasereither one of those two would be fantastic, but I really could use your help to get the word out and if you know somebody who's got Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis you know, please feel free to share the show with them, send them a link to it, whatever works best to get the message out and get more folks that are dealing with Ankylosing Spondylitis or Non-radiographic Axial Spondyloarthritis to be brought into the family and take part in the episodes. I also wanted to let everybody know that I've started a second podcast and it is called Discover Michigan's Thumb. So if you're from anywhere in the world and want to know more about the people, places and things that go on in Michigan's Thumb, the history, the beautiful, you know, Lake Huron, the sunrises, sunsets, all the amazing things that take place here, please head on over to discovermichigansthumb.com and check out the show. I would really appreciate hearing from anybody that's been here before, from out of state, out of country. People that want to come here, you know, it's just a fun and fantastic area with so many things to do from kayaking along the Great Lakes to even just sitting on the beach and relaxing with a book or taking in the historical sites. 

So with that, I wanted to go on to today's show, one thing I wanted to discuss and I've seen a lot of conversation generated about it is,  "I'm having a flare". What do I do with this flare, it's killing me? I'm feeling so bad, fatigue, everything. I don't know what to do. How do I get help with that? And you know, it's really interesting because flares affect everyone different. And I also help moderate a board on Facebook called Living with Ankylosing Spondylitis. And one of the things I've noticed is there'll be a lot of questions come in on flares and I'm in a flare, I just came out of a flare, you know, whatever the thing is that you're encountering. And we'll also get some questions from folks that have been told in one form or facet that their flares might get less as they age, and what I see Is all of a sudden everybody piles on and says, No, no, you need a new doctor, your rheumatologist is terrible. I have to go in and sometimes remind everybody is that all of our experiences are different and doctors will hand out some very generic information at times. And well, you may experience more pain or a different level of pain or a different level of flares at your age. That doesn't mean everybody does. Some people do experience a tempering of the flares. I can say that for the most part, I haven't had a bad flare in at least five years. Now I do get some pain on occasion. And most of that is helped by being on Cosentyx for the last almost three years, but I have to remind folks and I want to point out that some people will get flares, some people will get a worsening of AS as they go along. Some people might not start fusing if they fuse at all, or later in life. I started fusing when I was probably at least, I'll bet you, maybe 12. My hips were shot by the time I was 20. I had my hip first hip replacement at 21. My next hip replacement done at 23 and my back fused up then fairly quick. Up until maybe my mid 20s my back really hadn't been affected at all, it was my hips, my sacroiliac joints. And then when my back started in, oh geez that was a whole new ballgame. And after that ended, I'm now getting some issues with my neck. It is fusing slowly thanks to the Cosentyx much slower than the weight my hips and my back came on like freight trains when they hit it was just this massive, several years worth of excruciating pain. That's the best way to describe it. But remember that everybody's journey with this disease is different. That's part of what makes it so hard for diagnosis and it is entirely likely that some people may encounter less or no flares as they age. Well, unfortunately as you age, it might just keep getting worse and worse. Yes, the disease is progressive, but it's progressive to a point, once it's fused, you can't really get any worse than a total fusion. So remember that everybody's fusion level, and rate is completely different. So when you see somebody online that asks, "Is it true that, you know, we might get less pain as we age?", the really the only answer is "Maybe", and then add in your experience of, for me, that's not been the case so far. It would be nice in the future. If that happens for me up until this point, it's not been the case or yes, that was the case with me, but to just make blanket statements that know, that's wrong, is not really right to do. Anyway, that's my soapbox on that. I just want to let you know we all get this darn disease different and it affects us differently. So use the online boards as a learning tool, use them to help cope with what you're going through and to help you deal with the overall situation. Because it's really neat to go in there and see what everybody's dealing with and know how to take that back and use it yourself enough for that. 

Today's article, it was out of healthline.com and it's called Knowing the Symptoms of an Ankylosing Spondylitis Flare Up. Ankylosing Spondylitis is a type of autoimmune or autoinflammatory arthritis that typically affects your spine, hips, lower back, joints. The condition causes inflammation that we know leading to pain, swelling, stiffness, and other symptoms like other kinds of arthritis. As can sometimes flare. A flare happens when the symptoms worsen during the flare up, you might need to take more care and treatment than you needed at other times. What we all shoot for is that remission or even partial remission is when you have fewer mild or even no symptoms. The remission is really the holy grail of what you're trying to get to. So knowing when we might have a flare up what we can expect, and how to best hopefully overcome and soothe some of the symptoms is really what we're looking at doing. And that's what some of this was discussed in the article. So I kind of thought I would go through some of it again, relating it to me, and also to some of the things that I see people write online. 

What is a symptom of a flare up? Well, flare ups and their symptoms can be very different for every person with ankylosing spondylitis. And trust me, we moderate every message that comes in that board. So seeing the just hundreds of messages every day about the different ways what flares are affecting people, what ways is just mind boggling at times. Most people with this condition will notice symptoms from the ages of 17 to 45. Again, that's just a generic, there are people that are much younger. There are people that are much older, but the 17 to 45 is just kind of the middle of the road symptoms can also begin during childhood. And in older adults, you know that the article still goes by the thing that as is two and a half times more common in men than women. You know, it's sad that this is still out there and floating around and I look forward to the day when it's looked at more on a parity with AS. We know it tends to affect,AS tends to affect men a little bit more than women and the non-radiographic axial spondyloarthritis affects more women than men. But when you put it together under Axial Spondyloarthritis, it's pretty close to get to be a one to one. There are two kinds of AS flare ups now. Well, this article does talk about Ankylosing Spondylitis, a lot of these flare up issues are really applicable to non-radiographic axial spondyloarthritis as well. The difference being that with non-radiographic you'll get all the pain of the flare, you'll get all the issues to deal with. But in a good way, you're not getting at least the noticeable fusion taking place. The bad part is that you're still getting all the pain. So it's a double edged sword there. But basically even though it's saying Ankylosing Spondylitis in the article, a lot of this is applicable to both under the umbrella term of Axial Spondyloarthritis. So it can be local, you know, the pain can be local in one or two areas, maybe in your hips or your shoulder, or it can be general throughout the body. And I never had flares that were throughout the body, mine were always local. So for anybody that has one that is throughout the body, and everything hurts all I can't even imagine that I really feel for you. That's got to be just a terrible experience. Mine like I said, were primarily my hips and back. The signs and symptoms of the Ankylosing Spondylitis flare ups may change depending on how long you've had the condition long term, as flare ups typically cause signs and symptoms. As more than one part of the body, so again as the progressive disease starts off and affects your spine, moved to hips, maybe moves up to your neck, your shoulders down to your knees or your feet, that's the progressiveness of it. And if full fusion doesn't take place, you may experience worsening pain as you age as fusion takes place. Pain diminishes somewhat or changes as I like to say, and you may have different lesser flare ups feel like you're in remission. So what are early symptoms of a flare up? Well, there can be pain in the lower back hips and buttocks and the pain may gradually over a few weeks or months Come on, you may feel discomfort on only one side or on alternating sides. The pain normally feels dull and spreads over the area. Mind and a lot of cases I can remember when my hips were at their worst is it would take me 30-40 minutes to get to bed. I would have to use my right leg to shuffle my left leg over to the side of the bed in I would almost have to roll out of the bed fall on the floor because I couldn't just sit up and let my legs go to the floor, the pain would, you know, bring me to tears and there really wasn't a treatment for it. You can do some light exercise and stretching your breathing exercises, some basic yoga, some Tai Chi, if you can do that, you know if you can get to a pool and exercise in a pool, that's fantastic. Maybe a warm shower or a bath, heat therapies like a heating pad. Take some non steroidal anti inflammatories, you know, aspirin, ibuprofen, if you can, and then some physical therapy. And that's really about at this time all that can be done. Some people have tried acupuncture, I have not, I'd be curious to hear from you if you have, go to the website and shoot me a message about how that worked for you. Something actually I'm interested in trying and then there's medications on top of that if you're on a biologic that might help to reduce some of the pain overall, you know, by reducing the inflammation The stiffness, you know, you can have this stiffness in the lower back, hips, the buttocks really anywhere that the flare is affecting you. And it might be different whether you're standing up or sitting down. I see people write online about, I can't stand up. I can't sit down, I can't get comfortable. What do I do? I'm, I'm going crazy. I can certainly relate to that stiffness is typically worse in the morning and at night and improves during the day as you move around. Inactivity is a lot of times the worst thing for Ankylosing Spondylitis and again, it's the treatment for it is the similar stretching movement, light exercise, you know, physical therapy, heat massage, or even massage therapy if you have access to that neck pain and stiffness. You know, noted in this article is the Spondylitis Association of America notes that women may be more likely to have symptoms that start in the neck and not the lower back. Again, treatment is very similar. It's light exercise and stretching. Again, Tai Chi yoga, just your basic stretching warm Shower bath. I've noticed a lot of people talk about using Epsom salts for these baths. And I've never tried that I'd be curious to hear what people think and respond to using that. Heat therapy, NSAIDs, physical therapy. And then again, massage therapy. Fatigue is another item. Now, once your body is filled with inflammation, and if you're in a major flare, that inflammation is attacking as many areas as it wants to in your body, and that can lead to the fatigue that we all experience to one level or another. I know for the last probably six months, eight months by fatigue level has even doing well on Cosentyx my fatigue has just been crazy. So I'm not sure what's bringing that about, but the fatigue can lead to tiredness. And this may be worsened by disturbed sleep at night due to pain and discomfort. So really controlling inflammation can help in some ways to manage the fatigue. Not always but it can help Help begin treatment with that could be physical therapy, massage, and zeds any of that you might want to try other early symptoms that you may encounter inflammation, pain and discomfort can cause loss of appetite, weight loss, and a mild fever during flare ups. So managing the pain, inflammation helps to ease some of these symptoms. And again, with that treatment for it can be something as similar as an Said's physical therapy, light exercise and prescription medications that you are taking long term symptoms of a flare up. Well, chronic back pain as an Ankylosing Spondylitis flare up may cause chronic back pain over time. You may feel dull; the burning pain on both sides of the lower back, buttocks or hips could be one side could be both sides. Chronic pain can last for three months or longer. I mean there's really no timeframe as to when a flare lasts, the minimum amount or the maximum amount. So I've witnessed people online saying that they've been in flares for years. But again, treatment is NSAIDs, prescription meds possibly a steroid injection physical therapy that can be floor work or water exercises, you know getting into a pool, or even possibly massage therapy. There's also pain and other areas besides the back and that can spread to other joints, shoulders, your hips, sacroiliac joints, really wherever it wants to go. So you may have pain and tenderness in the mid upper back, neck, shoulder blades, ribs, thighs, heels, wherever I have it in my left shoulder at times haven't had it in a while. I attribute that mostly to the Cosentyx. But it would get so bad where I couldn't lift up my left arm, I would have to use my right arm to pick it up. The pain was excruciating. Again treatment, NSAIDs, prescription meds, steroid injections, you know in physical therapy. And then so for some people over time, stiffness comes into play. You may also have more stiffness in your body over time. Stiffness may also spread to the upper back, neck, shoulders, and ribcage. Again, it's gonna go wherever it wants to go with the stiffness being worse in the morning, gets better during the daytime as you're active, but then it can also you may have muscle spasms or twitching. And I'll kind of tell folks this when my back started really flaring bad. And I wasn't on any treatment at all. This would have been in the late 90s when I was living in Phoenix. And for the most part, the weather out there really made a difference. It really helped. But I can remember there was I was feeling really terrible for a couple days and just an immense amount of pain. And I sleep it in my wife was in bed next to me, you know when man I came shooting up in bed, sitting straight up, just screaming in the middle of the night, scared the heck out of her. And she was like, what's wrong? What's wrong? First thing she's thinking is maybe a scorpion have gotten the bed or whatever. And the only way I could explain it was that from right about my hips to my neck. It felt like I had just gotten a charley horse across my whole back. It was the mother of all spasms in this happened a few times, and it was just ungodly pain. And there was nothing you could do to unwind it so to speak, it had to do it itself. And I would just shoot up and screaming pain and then eventually be able to straighten back up to lay down, roll onto my side and usually didn't happen again that night. It was insane. I did some stuff I shouldn't have done I was taking copious amounts of and NSAIDs. It's probably why I have kidney damage now because I was taking so many and it was about this time that I got put onto Celebrex would be a few more years after this but it was about this time that I was finally put on Celebrex. But even then I was prone to occasionally taking end sets on top of the Celebrex, which was just more on more And again that's probably why I have the kidney damage now but the really the only treatment for this is NSAIDs or prescription meds, maybe some muscle relaxers. I never had much luck with those but I never really tried anything past Flexoril so there could be other stuff that's stronger physical therapy, floor and water exercises, a sauna or even massage therapy and even now that I'm really fused, and I still have the stiffness from just overall being fused and waking up in the morning but do my deep breathing and I love a good massage how lay down on the massage table and I'll ask to just have that lower back of mine. The massuse can skip the legs, skip the shoulders, I don't care about any of it. I had one my Seuss she understood as real well and she was really good at working out and I would go in and get to our massages where she just worked basically from the rib cage down to my waist. That was it at you would work at hard and it was great. I just lay there on my stomach. She would just go to town just massaging the muscles and working on everything. Oh, I loved it. And so I don't have access to it anymore since I've moved but you know, it's hopefully once we get able to get to massage parlors, and so forth and find a good mazuz I can find somebody that's relatively familiar with this. The other thing is loss of flexibility, you may lose normal flexibility in some joints, long term inflammation in the joints confused or join bones together, I fused my sacroiliac joints, my most of my back I posted pictures on if you go to the Instagram page for the podcast, which is as_podcast, and I'll have a link in the show notes. I posted pictures of my X ray so that you can see exactly what it looks like. But again, there really isn't any treatment. I have had the hip replacements to deal with fused and broken hip joints, but the main treatment is going to be NSAIDs, prescription meds, muscle relaxers, steroid injections back or hip surgery if applicable and physical therapy. Another thing is difficulty breathing and your ribcage can also fuse or joined together. The rib cage is designed to be flexible to help you breathe. If the rib joints become stiffer, it may be harder for your chest and lungs to expand. This may make your chest feel tight. Again, do your breathing exercises every morning and every night when you sit down to watch TV three, four deep breaths,...

Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. I hope everyone is doing fantastic. This week's message is all about ways to distress yourself and you know how, to hopefully put yourself in a better position with your Ankylosing Spondylitis and your mental state. 

This last week has been a bit of a challenge as my family moves through the one year anniversary of my father's passing. So you know, kind of some stressful items dealing with, thinking about, and I started looking and thinking what are ways that I can help myself to feel better, to move through this at an easier pace. I did turn to some meditation to help with the process just to really calm my mind and then look at some pictures and things like that. But how do I carry this forward for Ankylosing Spondylitis when it's not some kind of major anniversary but just in the day to day life, that we deal with having Ankylosing Spondylitis always present. 

So I came across this article that was titled De-Stress with AS: 10 Strategies to Ease Your Mind(link at end of show notes). And I thought, you know what I’ll read through them and there's a lot of really good information in it. As we all know, stress can trigger a lot of things. But for Ankylosing Spondylitis, the worst thing that we can get from stress is a flare, because we don't know how long that flare is going to last. And sometimes we can control it with medication and other times it runs amok and it's just over the top and we have no ability to rein it in until it decides it wants to stop. That alone is enough to try and keep stress at bay and it's really something we want to focus on as much as possible. There are many ways to de-stress you know, including properly treating your AS, practicing some relaxation techniques, talking to someone or just finding joy in a favorite hobby or extracurricular activity. So you may experience stress, you know, for multiple reasons, if you have Ankylosing Spondylitis with all the stuff going on right now with the COVID around the world, it could be financial health, all sorts of things are going on that can cause stress and lead to flares. Stress can lead to AS flares as I said, by creating tension in your body and triggering a response from your immune system. And once that happens, again, it's run amok and we don't have any easy way to control it. We can, again use medications to help to reel it in, but you know, that may or may not work. So what we want to do is proactively try to reduce stress, which may help to calm your mind and reduce or prevent additional ankylosing spondylitis symptoms. So, you know, try some of these methods. 

Number one, Stick to Your Treatment Plan. One critical factor for managing Ankylosing Spondylitis is to stick with what the doctor recommended to you. This generally can help to reduce flares, not all the time, but it can help to reduce flares. And maybe that can help to alleviate some stress. So they provided a checklist of things and your treatment plan may include checking in with your doctor regularly, seeing a physical therapist, or similar medical professional, staying active and eating a healthy diet, taking medications as directed, especially during flares, resting when needed, and avoiding smoking. Now, most of those I've done for pretty much my whole life. I never smoked, resting you know, when you're a young guy, you go, go, go, go and same with people that everybody else when you're young, you just go like crazy. So you get as much rest as you can and you just deal with it that way. Now, taking medications is, in my opinion, very important. When I was younger, there were no biologics and when I got to point where I could take them the type Humira and Enbrel didn't work long term for me. So that was something that it wasn't until about three years ago that I was prescribed a different medication, a biologic Cosentyx that worked great for me. What worked for everybody, I know some people try it and don't have any luck with it and get on the Humira or Enbrel and have great luck. Everybody's different, but work with your doctor to come up with a treatment plan that works best for you. And then I had done some physical therapy recently for a hurt hip and back and that really helped out and gave me some ideas about further working on the hip to try and get some mobility back into it. See, as you are best able to see the different doctors and stay on any type of treatment plan. 

Number two, See a Mental Health Professional. We all know that living with AS can cause you know, emotions to be all over the place. Whether we're easy to live with, irritable, hard to live with, probably all the above. So consider seeing a therapist or other mental health professional to help you manage the stress. If you're married or in a relationship, maybe see a couples counselor to help with any issues that can come about because of the Ankylosing Spondylitis. Because I know from past relationships, there was time when my significant other she just didn't understand what I was going through. She thought she did, she tried to, but she didn't and it wasn't until we brought in a neutral third party that were able to overcome some of the issues. There are different techniques that they can help you out with. They can help you deal with anxiety and depression. So you know, whatever your symptoms are, don't be afraid to go talk to somebody that's a mental health professional and get the help that you need. 

Number three, Stay Active with Low Impact Exercise. We all know that it's important to exercise and it's important to do whatever exercise you can do. I've said this before, you may only be able to get up and walk safe from a living room, around, you know, out to a kitchen and back and forth four or five times before you're just physically unable to do anything else. If that's the case, 2,3,4 or five times doing that is better than nothing. And if you get that to a point where you're doing it 10 times, 12 times, next thing you know, you're going to be outside walking around the block and then a little bit further and a little bit further and every little bit helps. It's that baby steps to get started. So it might be swimming, walking, if you can bike, that's great. Not all of us, including me, I I can't bike, my hips are shot, so I can swim. I was swimming before the whole COVID shut down thing and hopefully when the gym start open back up, I'll be able to get back into use the pool. 

Number four, Try Breathing Exercises. Breathing exercises can be an effective way to manage stress no matter where you are. One simple way to practice breathing exercises is to take deep breaths very slowly. Focus on your breath and try to clear your mind of other thoughts as you inhale and exhale. You may also practice breathing exercises more intentionally in a quiet space. As you do that, you know, sit in a position that's comfortable, and try to align your shoulders with your hips. While you elongate your spine. You may slack in other parts of your body like your face, close your eyes, place a hand on your stomach and breathe in slowly feeling your body rise and fall with each breath. I have to honestly say I don't do very much with the breathing exercises. I do every morning when I get up by sit on the edge of my bed and do three to 10 deep breaths to try and exhale and inhale. Exhale and inhale to try and stretch out the lungs and get the rib cage moving and keep that flexibility in my my rib cage going but That's really pretty much the extent of the breathing exercises I do. Others may do more and there's a ton of videos on YouTube that can help you get started. I'll have a link in the show notes to a video on youtube I found on breathing exercises that may be helpful to you. 

Number five, Practice Mindfulness. Mindfulness is a type of meditation that focuses on concentration on the present and letting your worries slide away. Research has found that this practice may help relieve stress, anxiety and depression. Mindfulness and other forms of meditation may take time to learn. So try not to get frustrated if you struggle to release your stress. When you first begin this practice, it'll get easier with time, you can begin to practice mindfulness by yourself at home or seeking training from oppression. This is one meditation I do twice; well I try to do twice a day. 20 minutes in the morning, 20 minutes in the afternoon. I took a class Oh geez, four years ago at the transcendental meditation Institute, or place in in San Antonio, Texas when I lived there. It was a four-day class on the basics of transcendental meditation. I enjoyed it. I never went back for any of the more special classes, specialized classes. I didn't want to do any of that. I just wanted the basics of doing the meditation. They did show me that. And it was a fantastic item for me. And I enjoyed doing it. It does. Calm you. Had you asked me before I took that class if I believed in it, I would have said no. I would have, you know, scoffed at you and said that it's nuts. But after I tried it, my outlook on it changed my view of it changed. And I completely I'm a huge believer in practicing meditation now. Whatever way works best for you. There are lots of videos online, on YouTube again that you can access to start meditation if you want. You don't have to go take a formalized class if you don't want to. And again, in the show notes, I'll have a link to a basic meditation video that I found on YouTube that I'll provide for you. 

Number six, Practice Tai Chi and Yoga. Well, here's the thing again, everybody tells you do yoga, do yoga, do yoga, and what am I telling you do yoga. I recently had on two guests that talked about their practice; they do Yoga for AS, which is their Facebook page. I'm going to have a link to Jamie and Geoff's episode in the show notes (below). And I would encourage you to listen to it. Both of them have Ankylosing Spondylitis. So this isn't some type of deal where we're going to stretch into pretzel positions and go crazy and you're going to be in so much pain. You can't stand it now Both of these gentlemen are great at yoga and can really do some advanced positions. But they're doing videos for people like you and me that are just starting off. I can't sit on the floor; I can't get into a cross-legged position. There's no way that can happen. So they designed videos for people like me, that can't do that you start off sitting on the couch, some basic stretching. I've been slowly incorporating the yoga for AS. And I'm very happy with both what Jamie and Geoff do. So I can't recommend that enough to you to go and check out that video series. Check out yoga for as on Facebook, and incorporate it in I think you'll really benefit from it. 

Number seven, Get a Massage. Normally, when you can and everything's open, I love to get massages. Even though my bed is fused, I love it when the mazuz really really works on that lower spine of mine pushes prods usually, you know, manipulated a little bit and I had a matuson San Antonio that that knew and was familiar with as and was very good about how she worked on my lower back. I don't have them appear now and I haven't been able to find them as soon as with everything being closed for the last three, four months, but once that opens back up again, I'm going to be looking for that you know, getting a massage, it can help reduce your stress and provide other health benefits if you have as there was a study done that found that massage has other clinical benefits for those with as beyond stress reduction, such as pain relief in the lower back. So discuss this type of treatment with your rheumatologist or your general practitioner or both. They may have some good referrals for us to a mazuz to see and then go in and out. Check it out, see if it helped is helpful to you. 

Number eight, Engage in a Hobby. Find something you like to do. For me, my main hobby is this podcast. I love doing it. I love interacting with the people that contact me. I'm also starting a second podcast on the history and traveling and recreation opportunities in the local area where I live. So those are two simple things for me to help relieve stress. What do you like to do because a garden? Is it fishing? Is it just going out for a hike? Is it photography? What is it, there are so many things you can do? Do a hobby that you like. And again, even if it's something as simple as walking and whatever, you know, just around a park, go for it. Get the exercise, see if you can walk a neighbor's dog for them, whatever helps you to relax and enjoy some some time out of the house. Go for it. 

Number nine, Talk to Friends or Family. Well, this is kind of another unique one in that so many people are now sequestered or staying, social distancing, and not as many people getting together, that can be a little more challenging. It's been very challenging for me. While I've gotten together with lots of family and really not changed around that too much. There's been literally no going out with friends, no going to any public places. So that's been really a challenge to me, and I'm really looking forward to the day one, go back and just stop at the local tavern to mix it up with some friends and shoot the breeze and have a good time and talk with folks. So that's really, it's really made this summer. The weirdest one I've ever experienced. 

Number 10, Keep a Journal. Well, this is a really good thing to do. And you can journal your thoughts, your feelings. Maybe you want to start a journal on just your pain in any given day and writing about it might help to get you to better diagnosis. Who knows if there are all sorts of things that can come from journaling? And well, it won't necessarily reduce your pain. You can share that journal, if it's medically based with your doctor so that they can see how you're doing. I had a gentleman on here not too long ago, James Allen, and James developed an app to put on your phone called Chronic Insights. James has ankylosing spondylitis. And this app is a way to track your pain in any given spot, and then use that to create exportable files to provide to your doctor so that they can see what you're dealing with. So I'll have a link to that show in the show notes and then you can go out whether it be a iPhone or an Android phone to look for the Chronic Insights app to document the pain that You're having associated with Ankylosing Spondylitis.

 So those are basically 10 items that you can incorporate one or more of to try and help with distressing your life might be a hobby or journal or you know, whatever we just discussed, that is very beneficial for you. And that's what's really key is doing something that you like doing something that you'll stick with and incorporating that so that you are getting some type of benefit some type of joy some type of calm for it. So again, thank you for listening. I really appreciate it. Please go out to spondypodcast.com and sign up for the Whenever I Feel Like Sending It Out Newsletter. You can also look and access Ankylosing Spondylitis podcast t-shirts there and a number of other things. And if you like the show and find value in it, please don't hesitate to stop at the buymeacoffee.com link and make a donation to help keep the show growing. Again. I really appreciate all you listeners. It's fantastic connecting with you. Feel free to send me an email at [email protected] and that's Jayson with a Y, Jayson at spondypodcast.com. Love to hear from you, so take care and have a wonderful week.

Healthline.com Article – De-Stress with AS: 10 Strategies to Ease Your Mind - https://www.healthline.com/health/ankylosing-spondylitis/de-stress-with-as

Relieve Stress & Anxiety with Simple Breathing Techniques: https://youtu.be/odADwWzHR24

Beginner Meditation - https://youtu.be/JslvBcIVtDg

Yoga for AS Facebook – https://www.facebook.com/groups/yogaforAS

Yoga for AS Youtube - https://www.youtube.com/user/jboder1

Episode 060: Yoga for AS - Interview with Jamie and Geoff - https://player.captivate.fm/episode/74d73997-efdd-4029-bf8e-ae413569b535

Episode 043: Interview with James Allen – Developer of Chronic Insights - https://player.captivate.fm/episode/9b41f5a0-55c9-4fe6-9ec4-4759a2296f50

www.spondypodcast.com

https://www.buymeacoffee.com/ASpodcast

Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. How's everybody doing? I can't believe this year is more than halfway over. It's flying by even as, as goofy as 2020 has been. The year is just flying right by today's episode going to be a little bit different. There's a website that I like, and I sign up to get notifications when they send out new articles that are put up on the website. And the website is called ankylosingspondylitis.net. And you can go there; you can sign up to get notifications. There are some good articles, and they're almost all written by people with ankylosing spondylitis, which makes them kind of interesting to read and see what others are going through. So the notification came the other day, and I see this title it says Be True To Yourself, Even if it Hurts. I noticed it's written by Jed Finley. Jed was on an episode recently with myself and a number of other people with Ankylosing Spondylitis, Episode Number 57, which was the group discussion on our Ankylosing Spondylitis journey, and I'll have a link to that in the show notes. Jed also started the Facebook group Living with Ankylosing Spondylitisthat has 28,000+ members in it, so it's a very active group, a lot of people a lot of discussions going on, on all sorts of different items. So anyway, he wrote this article, and I started to read it and you know, I agreed with a lot of what he was saying, and I'm just kind of gonna go through it and give my feelings and two cents on it. And the article is titled, Be True To Yourself, even if it hurts. And again, it's available on ankylosingspondylitis.net. and I have a link to that in the show notes. 

So Jed writes, you're walking down the street, you run into someone, you know, they stopped to talk and the first question they ask is, how are you? Well, we've all been there you see somebody, Hey, how you doing? What's it like? How are you feeling? For me, I walk and many of you can relate to this. Walk with a cane and I'm hunched over. So just seeing somebody coming is can be a challenge because I'm looking, you know, my neck is fused down. So to look up, I don't always see who's approaching. And my peripheral vision on the sides is bad. So I've had people say stuff to me and I, I've turned my whole body to look at them. And I think sometimes I might not hear them and they think I'm being rude. And that's not the case. It's that I don't see you or don't hear you. So, again, it's just one of those things that AS just keeps giving and affects us in unique ways. And it continues when you have a chronic illness. This is a loaded question. And it's loaded for T Rex, your friend or acquaintance is not ready for the blast. That is your answer. You say to them something like my back has been killing me for a month. I have four doctor's appointments this week. I'm trying a new medication, but it gives me headaches and my relationship with my spouse is strained because of my illness. He goes on. No, we don't say that. We don't even mention we are doing that great. We say the same thing every time I'm fine. Well, isn't that the truth? If you go into a big rundown of everything you're dealing with, most people are going to check out after like 30 seconds, then you're going to get the obligatory. Uh huh. They've got their own things they're dealing with, in some cases; they ask you how you're doing and they really don't care. They're just being, you know, nice, and that's fine. But you always have to temper it and that's one of the things that stinks about this diseases. Is it just somebody you talked to in passing? Or is it somebody that you might really know, and want to have a little more of a deeper discussion with it, and you have to judge whether they really want to have that deeper discussion, to understand maybe what Ankylosing Spondylitis says, I live in a very small town and recently, I was featured on the front page of the newspaper talking about Ankylosing Spondylitis. This was really great in that I've gotten a lot of local feedback from people that have Ankylosing Spondylitis that I had no clue about. So it's been great to connect that way. And I've had people say, Hey, I saw you in the paper and great article and you know, different things. So it was neat, that people are reading it, and it can bring some awareness and maybe might temper some of that. Well, how are you question, at least locally, because they read in the paper that, hey, he's not doing that Well. So maybe if I'm smart enough, I'm not going to ask him. How is he doing? So I don't know. It's just you think out loud as you read through some of these things. And, you know, it's just kind of how you deal with in our day by day basis, he continues, we know nobody is prepared for the truth, nor do they really want to hear all that is going on. They expect and I'm fine and to move on down the street. I'm fine is our way of protecting them and ourselves. And again, it ties back into the point of; we only have so much energy in any given day, Ankylosing Spondylitis is draining. As it is, do you want to continue to run around and tell everybody how you're doing when they most likely aren't going to listen? Now, that doesn't mean don't be an advocate. Definitely be an advocate, if you choose for educating people on Ankylosing Spondylitis, that might be a article to the newspaper that might be a internet post. It might be coming on and posting and being active in one of the forums like living with Ankylosing Spondylitis. Being an advocate, it can be with people that are just coming on board that don't know anything about Ankylosing Spondylitis, or just got that diagnosis and are nervous and you maybe you've been dealing with it for four or five years and you can say, Man, I remember what it was like when I was in that situation and your words, your response to somebody on a forum, maybe that calming piece that they need to read. Just consider, you know, if you want don't hesitate to, to not be a advocate for Ankylosing Spondylitis. So he goes on, the truth hurts, but why? Why do we feel the need to protect them? I want to share my reasons and afterward I want to hear yours. See if any of these apply to you not passing along pain. He goes, I believe if we're honest with the people in our lives, it would kill them. They aren't ready for this level of pain. This especially applies to family members and others who care a little more deeply. They want us to be well, and they hate that we hurt. Some of them wish they could do more to help us and the fact that they can't hurts. And this kind of ties in recently, you know, with the article I mentioned, when it was putting the paper, I got a like a PDF copy of it that you can find on spondypodcast.com and my stepmom sent it out to some family members. And when my aunt replied to my stepmom she wrote, we knew he was hurting, but we never knew to the extent of it, he hides it so well. We never knew all the stuff he was going through and they shouldn't know all the things I mean, you know, I don't go around and share with everybody unless they ask if somebody asked me, you know, something specific, how was your hip replacement? How would you know? How is your back, I'm gonna probably go into a little more detail. But that's just me. You may not be comfortable doing that. And, and I can certainly appreciate that and, you know, you do what's best for you. So Jed goes on and says, I'm not honest with my parents about my health, they have their own medical issues, and they don't need to be worrying about me as well. Saying I'm fine, is my way of helping them keep things off their plate is not our friends and families fault that we are in pain, why make them feel it? Like it is? Well, I agree and disagree with that to it to a degree. Now, that doesn't mean that in this example of a parents, that you go over and just dump on them. I go over and ask my parents, how are you doing medically What's going on? You got any doctor's appointments? You know, I I want to be aware of what they're going through. I want to be aware of if there's an issue, if they'll tell me, sometimes they don't. And so sometimes you have to make some inferences and make some guesses as to what they're up to. And if they then in turn, ask how I'm doing. I may say, last couple days have been real rough, my back's been killing me or this or that and you just kind of deal with it and take it as it is, you know, I, I've had the communication with one of my parents before about my house, it's not dirty. But there are some stacks of papers around, there's some clutter, and that I know drives him nuts. But guess what, that's me. I don't have the energy all day long to spend it, picking stuff up and try to do the other things I want to get done. So I have to pick and choose the battles of what gets taken care of around the house. And if they don't like it, again, it's not dirty. It's just some stacked up papers that I eventually get to and, and move on. So it's just one of the ways of dealing with it, but I don't try to hide from anybody what what I'm going through. This is a big one though he Jed continues and he says, I just don't have the energy. From my experience. Most people I'm honest with don't want any follow up information. They hear I heard, and they say hope you feel better and move on. However, from time to time, someone wants to know more and after that, they have follow up questions, and I don't have the strength to give all the answers. So somebody might say, Me: You know Ankylosing Spondylitis is a form of arthritis. Them: Is it like rheumatoid arthritis? Me: Kinda, but a little different. And on the questions go until you feel like you should be paid for the med school level explanation you're giving. Well, again, that's where I agree to disagree to it to a extent because there's such a limited number of people in the United States that deal with ankylosing spondylitis. It's not something that is on everybody's radar. They don't know what it is. Sometimes you've got to give them a little bit of information to kind of bring them up to speed. That no, it's not rheumatoid arthritis, it's not osteoarthritis. Those are damaging in their own ways, but they're not ankylosing spondylitis. And the name doesn't help out because we know what it is. But it doesn't tie into like, it doesn't say arthritis in it. But that's because it's more than just arthritis. So, the name can be confusing that the level of information we provide may not always be the amount that somebody needs to comprehend. And on the other end, the person that needs to comprehend it may not really be in a position or have a desire to comprehend. So they just kind of Yeah, whatever and move on. So again, it's where are you going to use your energy in any given day that best helps you that's best for you. He continues, and you might not have all the answers or the ability to stand there as long as they are wanting you to. And that's a big deal. Like, I can't stand very long. So if I meet somebody in a grocery store where I can lean on the cart, fine, no problem. If I'm out on my cane, I've developed like a great little elevator speech, because you got about three minutes before I gotta get going and move to keep moving because I can't just stand there, unless I can find something to sit down on. And then he goes on. I'm all for spreading the word about AS, but sometimes I'm fine, is all I can muster. And again, if that's you, and I'm fine is the best you want to give and can give, hey, that's there's nothing wrong with that. That’s entirely up to you and you give of yourself as much as you want or feel that you can. We're all different and we all have different things we want on any given day, not wanting to be minimized. Jed writes, AS is a very serious condition. So when someone takes your symptoms and tries to treat them like something they're not, it can be quite helpful. He writes, have you tried a vegan diet? Ice and rest do wonders for me? Have you tried and then insert any herbal remedy here. While we are all getting older. He says that last one makes me read. On a side note, I once had a doctor say, we are all getting older, you're just getting older, a little faster than most. He says that's still my favorite comment. At least he gets it. I did numerous episodes that are really good to share with your family if they're just maybe not getting it not understanding it. I've said this in the past that a lot of times, if your spouse or significant other, if they hear you continue to talk about something, they tend to be a little more dismissive of it at times, not exactly the right way to handle it, but that tends to happen quite a bit. But if they hear somebody else talk about it, I believe that that lets them if they listen, it lets them then turn and look at you in a real light. Go on. I'm hearing this person say that they're going through this, this and this. Do you experience this? Let them start to ask you in their understanding, hopefully becomes better. So I've done a number of episodes that you can access to share with your family. I have a link to a collection of episodes down below. But there's ones like, Episode 41: An open letter to my family and friends. Episode 29: Pet peeves heard about Ankylosing Spondylitis, in Episode 28:Five things. I'm tired of hearing about Ankylosing Spondylitis. And then finally, Episode 13: 10 things not to say to someone with Ankylosing Spondylitis. So in the shownotes, I'll have a link to that collection of episodes and you can just share that with anybody and they'll get all four or five of those episodes right off the bat and be able to listen to them kind of just in a chunk, and maybe get a better idea of what you're dealing with on any given day. So Jed continues on with the article. But with those lines, all they're trying to do is minimize and simplify our condition. They may want to legitimately help us. However, they aren't willing to put in the effort. vegan diets and herbal remedies might have helped them or someone they knew with their energy level or sleep. Maybe it even helped with their pain. But as of right now, Ankylosing Spondylitis does not have a cure. And that is what they're looking for a one step and done solution, believe me, if as could be cured with vegetables, I think we might have heard about it. Jed continues on with this section. Quite frankly, I just don't trust you. There are people in our lives who we just don't trust with our condition. Oftentimes, it's a boss supervisor, or the nosy co-worker in the break room. The people who can't handle our reality or might use it for nefarious purposes. Now that I have accommodations under the ADA, I am out about my conditioned with my supervisors. However, that still doesn't mean I'm going to give them every bit of information about how my day is going. And the nosy co-worker. Yeah, right I really don't care, who knows about my abs. But I also don't want to be the subject of gossip. Those are two different things. Well, I no longer am in the workforce. And so I don't worry about co-workers or anything of that nature. I can remember back to times where, before I had gone into under FMLA, with my hip replacements, I was kind of, you know, I would have people ask me how I was doing and they could tell I was in pain and that something was off, but I was real careful about what I said to anybody. And it wasn't until after my hip replacements, when I was on crutches for what ended up being a couple years that I couldn't really hide what that something was going on. Well, there are some workplace accommodations, at least here in the states that were made for me. I'm not sure how anybody else around the world would handle it. Everybody's got different laws and different regulations. So you have to address that or approach it in the way that that is best for you. And then he continues on, you know, try to be yourself. Now that I've laid out the most popular reasons for people telling you are fine. When you are most certainly not going to turn the tables just a little while you are in your full right to share whatever you want. I encourage you to be true to yourself. Your AS life is your life, and you shouldn't censor yourself for the benefit of others. If you give someone the full story about all your pain, appointments, struggles and relationship stresses, and they can't handle it. Do you know whose problem that is? Not yours. Let them be the ones to feel uncomfortable for a change. You are an important person and you deserve people's attention. The fact that someone wants might not have the best reaction doesn't mean you shouldn't share. It actually means you should share more. You are the forefront of the information on movement someday. When Ankylosing Spondylitis is a household name, you'll be part of the reason that happened. And that's very true. Again, we are our own best advocates, whether that be with the doctor as you push for better diagnosis, a diagnosis, better medications, better treatment options, you are the one that has to best approach that and deal with it. And you have to be the one that pushes to always have your best interests at heart. When you're dealing with family, friends, spouses. You have to give them enough information to understand what's going on, but also not to hold that against you or to disregard what you're going through. You are the one that has to always be your best advocate with everybody. And as a side note to that, I did an episode at the end of March episode 43, where I interviewed James Allen, and he developed an app called chronic insights. And I'll have a link to that episode in the show notes. But if you go out to I think at the time, it was only available on the apple platform, but check if you have a Google or an Android phone check to see if it's out there. The app is called chronic insights. And he's building this app up. And right now it's focusing on helping you as an Ankylosing Spondylitis patient, track your conditions on a daily basis. So the app is being designed. James has Ankylosing Spondylitis, and the app is designed for people with Ankylosing Spondylitis at this time. He will be incorporating some other elements into it as he builds the robustness of the app up. But I wanted to let you know that I saw some changes come along some updates as he continues to work on that. So with that said, I hope everybody has a fantastic day. Please do me the honor of going over to spondypodcast.com, signing up for the newsletter. And then if you're so inclined, take a look around. I've got options for picking up a T-shirt there or a sweatshirt; you know a number of different things. So, thank you again. I look forward to hearing from you. Please don't hesitate to go out and contact me through Facebook or Instagram. I'll have the links in the show notes. Take care and have a wonderful week.

www.ankylosingspondylitis.net

Helping others understand Ankylosing Spondylitis - https://player.captivate.fm/collection/9f3e0f6c-7c48-4c1f-9b23-82821fc6bdd3

Episode 43: Interview with James Allen, developer of Chronic Insights app (to track your AS symptoms) - https://player.captivate.fm/episode/9b41f5a0-55c9-4fe6-9ec4-4759a2296f50

If you would like to make a donation to help keep the show on the air, use www.buymeacoffee.com/aspodcast

Hello, and welcome to today's episode of The Ankylosing Spondylitis Podcast. I'm really glad that you could join me today because we're going to have fun today, we're going to be combining some of my favorite subjects history, modern medicine, and a little bit of speculation mixed in. So stay tuned. This one should be a lot of fun. 

I've partnered up with a couple of really good companies. One is Joy Organics and you can find the link in the show notes. If you use that link. It doesn't change the price of anything for you. It just reverts a little commission back to the show to help keep the show going and hopefully growing and Joy Organics make some of the best organic based CBD products that you'll find whether it be tinctures pills that I take the soft gel tablets, I really like those and also a drink mix that I just put it into a jar water, shake up the water and drink it and it adds a bit of CBD through the day as I drink that water. So it's a great way to help level it out through the day as you're drinking that. So they have all sorts of products, lotions. So check out the link to go to Joy Organics. They're 100% organic hemp grown in the United States is where they derive all their CBD oil from so you can't go wrong going to Joy Organics link in the shownotes. The other one is new. Now, if you have kids cover their ears Foria is an intimacy lotion that is really fantastic and it works. I don't even know how to describe it beyond just that it works. It has a CBD base to it, and you apply it and it helps. So again, go to the show notes where you can access the link for Foria and then go and read about it and see if that fits something that might be of interest to you. Again, no price increases but it does pay a commission back to the show which helps to keep the show going and growing. Thank you. 

So in today's episode by the title, you saw the word Neanderthal and you go, “What does that have to do with ankylosing spondylitis at all?” Well, I wondered the same thing. And then I was directed towards a few interesting articles and I started reading them and it really was a very interesting hypothesis. So about 30,000 years ago, give or take a few thousand years. What we would know as the modern homosapien came wandering out of the continent of Africa as they were migrating north. And as they got into the colder climates, they walked right into and head on confrontations with an ancestor of theirs that was already living there. But that hadn't changed in the hundreds of thousands of years. The Neanderthal was they got there, what you would expect took place, conflict, fighting, death as one type of species tried to basically conquer the other. Which one was going to win? Well, it ended up obviously being humans, you know,Homo sapiens. But did we walk away with a gift or maybe a curse From Neanderthals? Well, let's look at that. It's an interesting hypothesis or interesting series of debates that had gone on around this. So I was directed to a website called Everyday Battle, where there was an article entitled How a weird fetish among our ancestors led to Ankylosing Spondylitis. And so I started to delve into this article and found it to be really interesting, and I'll have a link down below what the studies are showing where now this is from some information that came out in the 2013, 2012 somewhere back in that area. But it was based upon looking at the DNA of Neanderthals and (modern day)humans and what they found in that and what may have carried over to us as modern humans. Studies suggest that Neanderthal genetics may be responsible for autoimmune diseases in modern humans. The author discusses a documentary called Decoding Neanderthals and in that documentary, they talked about discovering in the ancient DNA of these Neanderthals, the HLA alleles, and one particular HLA, HLA-B27 is the main genetic marker that's used to diagnose Ankylosing Spondylitis. It's found in 95% of the people with AS. Now, that doesn't mean that if you don't have it, you're not going to get Ankylosing Spondylitis or even non radiographic. This is just saying that this gene is found in the predominance of the people that have this disease and as we know, HLA-B27 is an antigen and it helps direct how our white blood cells work. And when you have Ankylosing Spondylitis, that HLA-B27, it malfunctions that it gets messed up and this causes the immune system to basically attack itself. So where does alleles come from? And how did it get to be part of our genetic code? If it can screw some of us up and cause us so much great pain? Why would the body build it? Why historically, why would genetically it come to play to say, Hey, we're going to, we're going to make some people have this great amount of pain, there must be some benefit that it serves, or there must have been some benefit that it served in the past. And the answer may come from being interbred with Neanderthals. Now, this still hasn't been completely documented. And for sure, this is just a “what if”, so please take it with a grain of salt that it's just a what if and I thought it was kind of interesting and a great way to look at the disease from a historical perspective. We know that Neanderthals were the first, you know, one of the first human like species to leave the African continent. And they diverge from what was a common ancestor coming out of Africa around, you know, 600,000 years or so ago, and they had to adapt to a new locale outside of the African continent, and that new locale would be the European area, Russia, Asia, that area, it's cold, they aren't used to the cold in Africa, different types of animals, different types of bacteria in the soil, everything was different than what their ancestors have had to deal with and they had to come about and develop immunities to all that. So in this is where the weird fetish, you know, comes in Neanderthal genetics are, you know, more common in populations of European and Asian descent. So that same population that shows a prevalence of Ankylosing Spondylitis, so it implies that our ancestors were having sex with Neanderthals and do this you know, we got some homosapien walking down the trail, middle of the woods looks over and sees this hot lookin, hairy humanoid, who can't speak with him, but the birds and the bees come into play. And what eight, nine months later, here comes this little baby that's carrying 50% homosapien DNA and 50% Neanderthal DNA. Boom, just lik e that Neanderthal DNA is introduced into the homosapien genetic line and maybe that female is absorbed into the homosapien tribe and that baby grows up looks different than the other Homo sapiens, but breeds with a homosapien. And eventually, the lineage looks more and more homosapien. But that female Neanderthal DNA is still in each one of those ancestors and just a smaller and smaller piece. And if that little bit of DNA encompassed the HLA-B27 gene that the homosapiens coming out of Africa didn't have maybe that's where it came from? Is that we're looking at and why was it developed? What did these HLA-B27 or any of these HLA's benefit the Neanderthals, and that, you know, they wouldn't have had them in the southern part of Africa where the Homo sapiens were developing? Well, let's take a look Neanderthal and Ankylosing Spondylitis? Well, Neanderthal remains have shown evidence of arthritis. They've done genetic sequencing on the remains that they found. And they have shown that Neanderthals had a predisposition to diseases like psoriasis, Crohn's and lupus, though there is currently no direct connection confirming that HLA-B27 in particular is of Neanderthal origin. Inheritance of the HLA alle in our ancestors means that Neanderthal interbreeding could be to blame for your Ankylosing Spondylitis diagnosis. So now how does this help you in our everyday battle against the disease? For one thing, it might explain why certain types of diets are better for reducing flares reducing the symptoms of Ankylosing Spondylitis. You know, if you cut out the carbohydrates, things like the Paleo Diet, Raw Diet, you know, No Starch Diet, No Sugar, you know, all those can have some very beneficial results for people. With ankylosing spondylitis seems no accident that these diets tend to mimic what our ancestors were eating at the time. So if you're at all curious about how much of Neanderthal DNA you may have, you can go out and do a 23andme test, which is where I got my results from it said in my results, I was higher than 66% of everybody else that they had done 23andme tests on, I found that kind of interesting, you know, they'll sequence your DNA, it's really easy. You basically just spit in a little tube, you know, 15 times or so and send it in and, and that's it. And then you'll have scientific proof that you have some or no Neanderthal DNA.  

On to the main portion of today's episode. I hope y'all like that little rundown on Neanderthals. I just thought it was kind of interesting. 

So, in looking through some of the forums on Facebook, I've seen a lot of questions either; should I start biologics? I've just Just started biologics, I need to switch a biologic and a lot of what do I expect? Well, it's really dependent upon you, there's no way to say, here's what you're going to expect. And there's not really even a way to generalize what you're going to feel because we all respond to these things differently. But let's kind of look at what the Axial Spondyloarthritis is, and Ankylosing Spondylitis as well as non-radiographic axial spondyloarthritis. But there's some interesting information on biologics for the non-radiographic for the moment we're going to focus on the Ankylosing Spondylitis. So it is a chronic condition. Some categorize it as autoimmune in other spots, you'll see it as auto inflammatory. So it basically is a disease that attacks the joints in your body, for lack of a better term the hips, spine, your knees, your feet, shoulders, it can really attack anywhere. Me personally, mine came on very, very heavy in my hips. When I was a kid, and has now as an adult progressed through my spine, where I know many of you in talking, have told me that it hits your spine yet sore back all the time and has moved to your hips. My mind kind of went in reverse from a lot of people. And this condition can fuse your spine, fuse your hips, be extremely painful cause lack of mobility, and possibly even leading to going on disability where you can't work. In my case, I'm in the United States. And I had both hips replaced by the time I was age 23. And then fast forward by age 40, the left hip worn out had a hip replacement. It was actually supposed to be a revision, I went in for the revision, and he saw the all the extra damage in there that wasn't visible on the X ray and I ended up having to do a hip replacement that didn't take. About three weeks later I went back in for another left hip replacement. So I had two hip replacements done in a matter of a month in 2010. It's now been 10 years since, and I'm still dealing with some issues of sciatic nerve damage, drop foot, things of that nature on my left leg. So it's, it really can affect us all in just numerous ways and some people will get it and have very mild conditions and something like a biologic might not be appropriate or helpful for them at all. So how do I know if a biologic will work for my Ankylosing Spondylitis? Well, you generally don't. But one of the ways they look at it is there's all these different medications that you can start off on that are over the counter medications, like Aleve, ibuprofen, acetaminophen, those may be ways to help how you first start to control. The initial stages are symptoms of Ankylosing Spondylitis, they will knock some of that inflammation down, but eventually for many of us that inflammation rises to a point where the simple over the counter medications just can't work anymore. So maybe they try something like a Celebrex or something a little bit stronger to help that may help you a Sulfasalazine, Meloxicam, Methotrexate. There are a number of different medications that they can try. Well, at that point, your doctor might say to you, I think it's time to look at biologics or if you're in certain countries, they might use a term called biosimilars. And those are a version of the biologic that if you listen back to Episode 51, (link below). When I discuss an interview Michael Mallinson, we talked about axial spondyloarthritis and in there; Michael does a really good discussion on the difference similars and differences of the biologic and the biosimilar. So I would encourage you to go out and listen to Episode 51 for a more detailed explanation of that, but as we go and look at the biologics, I'm going to start off with just the biologics. I won't jump into the biosimilars in this particular piece. But there really are six main names that you'll hear in the biologic world. When you start to discuss them. You'll hear of course, Humira and Enbrel, Cimzia, Simpony, Remicade and Cosentyx. There's another one out now that you hear quite a bit called Taltz and if you listen to Episode 25 that I did back in December (link below) that's titled New Guidelines for Treating Ankylosing Spondylitis. In there I did a discussion on the kind of protocol that they're (Rheumatologists) trying to put in place so that as patients with axial spondyloarthritis, when we go into rheumatologist, we should all get about the same type of treatment, the same type of recommendations now they'll vary because there could be different things the doctor sees that make you A little bit different than others, but it's really just trying to standardize the level of care that we receive as patients. So again, that's Episode 25. (link below). When a doctor is looking at the biologics for you, and how to assist you with feeling better, they're going to kind of look at these five things, as determinations of your ability to use biologics or ability to stay on biologics. And again, as with any type of medication, and treatments. I'm not a doctor, I'm just relaying some very generic things that should be helpful to you to go and have that discussion with your doctor. You may be concerned unsure of where to start even nervous to talk to your doctor and don't be and hopefully an episode like this can help you formulate the questions you want to want to bring up to your doctor.

Number one: Did other medications provide relief? Doctors don't always recommend biologic therapy for everyone with as typically biologics are for people with moderate to severe as in that if they haven't responded to other medications, this makes a next logical step. They're generally not the first line of treatment for this condition. But depending again, on your severity, they may be the medication that your doctor says here, we're going to skip all this other stuff and go right to biologics. That's where the doctor’s discussion and knowledge of you is going to come into play. Some people can improve their symptoms by just making lifestyle changes. These can include you know, being more physically active, which leads to increase joint flexibility, losing weight to reduce pressure on joints, learning to control stress, you know, stress can trigger inflammation in the body. So if some of those have been tried along with maybe over the counter medications or something stronger like Celebrex, and they're not working then The next step is the disease modifying antirheumatic drugs DMARDs that include biologics, and these can help to improve your condition and may very well work for you. 

Number two: Can I keep up with scheduled treatments? That's the thing; biologics are not like a pill that you just take once in the morning. There is a usually a shot involved to it and biologic therapy isn't available, you know, as I said, in a pill or oral form. Instead, you'll receive infusions at your doctor's office maybe a few times a year, or you'll give yourself your self administered shots, either using a regular needle syringe, or a almost like an epi pen, a self injector, an auto injector pen. And so these biologic treatments target proteins in your body with the purpose of suppressing your overactive immune system and calming your body's inflammation response to what they think is going on what they think they need to attack. For this therapy to work, you have to keep up with your scheduled injections and/or infusions. If you stop treatment, not only can your symptoms come back, but also that biologic that you were experiencing relief with may not work again for you. You may have to then start going hunting for a new biologic to work for you. So, once you start on, there's something you're going to stay on. And keep in mind that biologics aren't a cure for a AS, there is no cure for this condition. They simply serve to suppress or bring down that immune system and thereby help to hopefully slow and or stop the inflammatory attacks on your joints and making your body deteriorate. 

Number three: Will I take other medications with a biologic? Possibly, if you're a candidate for a targeted therapy, your doctor may prescribe only a biologic or you may receive a DMARD to take with your biologic treatment, even though biologics are effective for treating AS, some people don't respond to the treatment alone and need a combination of therapies. You can't take two biologics at the same time, but it is generally safe to combine a biologic with an anti rheumatic drug. So you might take it in combination with a Sulfasalazine or a Celebrex or Methotrexate. There's a number of ways that medications can be combined to help you. I took Celebrex along with Cosentyx for several years and finally had to stop all NSAIDs due to some kidney damage from long-term use and in some cases, abuse of NSAIDs that I did when I was younger to try and relieve pain. So now I'm just strictly on Cosentyx for the AS that I deal with. 

Number four: Who shouldn't take a biologic? Well, despite the effectiveness for many people that use the biologics, it's like all medications. It's not right for everyone and your doctor is the person that is going to help you determine if this medication is appropriate for you. Even though biologics aren't like traditional immunosuppressants that suppress the entire immune system, they can compromise your immune system and make you susceptible to illnesses and certain illnesses and infections. It also becomes harder to fight infections while taking biologics. Me personally, I've been on Cosentyx for almost three years now, and I do notice that I get sick less often I get my flu shot every year, and then I really don't get sick. But if I get a cut on my arm or leg or whatever, it takes a long time for that to heal, probably two to three times longer than what I think the average person would take to heal up. So I put some neosporin on maybe a bandaid depending on the type of cut but it really I do notice that cuts and things take a long time for me to heal. Your doctor may not recommend biologic therapy. To you, if you have a weakened immune system for any reason, you know, for instance, if you're being treated for any type of cancer or you've been diagnosed with HIV or Hepatitis C, that may rule out biologic treatments for you at this time completely, the immune suppressing effect of biologics could worsen some of these existing diseases. So therefore, if you have an active infection, you should wait until the infection clears before beginning treatment, and then also, you know, long-term use of biologics may increase the risk of certain cancers. I say this because it is listed as a side effect

Jayson:

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. Today I'm very excited because we're going to touch on a subject that I get a lot of requests and information about, and that is yoga, specifically yoga for people that have Ankylosing Spondylitis. And today I've got both Jamie Boder and Geoff Lindsay on. Jamie is an instructor and teaches people yoga right now virtually. And he's located in England. And Geoff is an instructor , and  has his classes that he shows and demonstrates different processes. So Gentlemen, welcome.

Jamie Boder:

Thanks for having me, Jayson.

Jayson:

It's great to have you guys. So, Jamie, tell me a little bit. You also have Ankylosing Spondylitis. Tell me a little bit about your diagnosis. And then were you into yoga prior to your diagnosis or was that something you came to afterwards?

Jamie Boder:

So I started experiencing some things when I was about 14 and was put to growing pains and then other different conditions, lots of different lists. And eventually, I asked my GP, I need to see a rheumatologist just how to interlink. And then the day I saw her, she said, Yeah, I'm pretty sure it's this condition. And that was when I got to about the age of 18. That's when I got my diagnosis. And at first, it was a lot to take in. And I don't think the Internet can always be a very helpful place to learn about the condition if you're new to it, but that was my position. And the biggest thing that I was really thinking about was being a skateboarder half of my life, started skateboarding when I was like six years old, I was like, I can't stop. This isn't my big passion at the time. It was something that you know, competed and a very huge part of my life. So anyway, I went to a support group, and I wasn't very up for it, but I kind of forced myself to go, and that's where I met Geoff. And Geoff looked really in a good place, physically and just had something, you know, looks very healthy and I asked him, What were you doing, Geoff, you know, you must be doing something different from other people. And he told me about yoga. And it was that day, I went home and literally dedicated myself to practicing yoga for about, yeah, just pretty much every day for a year. I just didn't stop and yeah, transformative, to say the least. So that's a little bit about my journey with yoga and AS and have been practicing ever since and now teaching as well.

Jayson:

So how many years has that been now?

Jamie Boder:

So it's been about five years of being practicing yoga consistently, nearly every day.

Jayson:

So with that, have you noticed any worsening like in your x rays that your GP will do?

Jamie Boder:

So when I first started having symptoms I was in such a lot of considerable pain and struggled to. I had a bit of a limp and couldn't sweat definitely couldn't do any sort of sports, just essentially very desperate. And for the last two years, I've had stiffness but I haven't had any pain whatsoever. And that's was a bit you know, huge huge for me. So yeah, I'm in terms of x rays and things like that. I last had an xray about two years ago, and there's things are looking pretty good.

Jayson:

Now, are you on any medications or biologic anything to help with that?

Jamie Boder:

I haven't been for on biologics for a year. I stopped biologics about a year ago, because I'm not for or against medication. I know medication can work very well for some people. But for me, I was at the point where I didn't feel like I was in need of it. And therefore I stopped taking So not on at the moment, but something me and Geoff will always emphasizes, if you're on medication, yoga can help with that medication with it's all integrative. So we're not we're not against using medication when necessary. And sometimes this happens in holistic worlds where they say, right, this is where this is our approach. You should stop all your other approaches. What we're saying is, this is a tool that you can use, you can harness and you can apply to your current life situation. And that's where things become very empowering.

Jayson:

Now, Geoff, so you've been practicing yoga for how long?

Geoff Lindsay:

About 30 years, a little over 30 years. I'm now 71. I started going to a yoga class once a week when I was about 40. I at the time was undiagnosed. I've been having symptoms for about 17 years. I started when I was 24. Then I found that yoga was making me feel good. It was relieving my pain. And I didn't understand why that was at all. But as we all know, it's an illness that generally progresses and it got to the point where I couldn't go to yoga. I couldn't go to class, I couldn't lie down, I couldn't sit down. My score on my overall disability level went up to about 8.5 out of 10, which was pretty bad. So then I get diagnosed, and I get put onto medication and medication was like a magic bullet for me, instant pain relief. I also then went on to a two week AS rehabilitation course at the Royal National Hospital for Rheumatic Diseases in Bath, England. And that course has now been running for about 40 years. I've been on it three times and on that course I learned that when we have AS, we have inflammation both in the joints themselves, and also in what are called the enthesitis, which is where, the ligaments and tendons and muscles join onto the bone. And when you get inflammation in the joints, and in the enthesitis, stretching, elongating extending unfolding, literally breaks up that inflammation. So that's why going to yoga all these years, I felt so much better. So in combination with the medication and continuing yoga, I was feeling really good and basically my AS has not gotten any worse in the last 10 years. The X rays, so no worsening which I'm told is quite something for a 71 year old. I have an active life. And because I practice yoga regularly and I do the kind because I'm so experienced now say that I've been doing yoga For more than 30 years, so I kind of know what I can do and what I can't do. And what's good for me and what isn't, I can like now I've been sitting for 20 minutes, I'm starting to get an ache in my back. And I, I can do a couple of twists, I can do a couple of poses, and I can relieve that pain. After we've done this session. When I've been sitting down for a long time, I'll do maybe half an hour's whole body yoga, and that will relieve my pain for the rest of the evening. So I guess our message is that a young guy and an old guy, we've both discovered that yoga can be modified for AS, it can be made safe. The good thing about yoga is that people will stick at it because you can go to a yoga class anywhere in the world. So if you choose your style of yoga, wisely, if you go to a beginners level, you go to Hatha Yoga, that's the safest way and you choose your teacher well, then people stick at it generally. There are benefits. Of course, there are risks. So I don't advocate anybody doing anything that compresses the spine. So for example, headstand shoulder stand, something called the plow. And for most people, there are modifications which need to be done. For example, everybody thinks of yoga when you're sitting cross-legged on the ground. I can't sit cross-legged on the ground very easily. You just move your feet a little bit further in front of you and sit on the block or sit with your back to the wall and you can still get the benefit of some of the stretching and extending and elongation that we do in yoga poses.

Jayson:

Okay, so a big thing here in the States has been classes because of the aging population, has been the what are termed senior yoga classes, which I've always kind of termed those as a arthritic yoga classes well, only because they really try to emphasize maybe sitting down and doing different things from a seating position, some basic stretching. And I've always kind of thought that's a good spot for somebody say that's very fused and in my condition versus somebody like Jamie, who, you know, skateboards and is a very active young man, that stuff would kill me. So, is it fair to say when you're looking for somebody that's a yoga teacher? And is it fair to say, when you go in and talk to the teacher to say something like, do you have experience with arthritis or ankylosing spondylitis? Are you really shopping for somebody that understands the condition, correct?

Geoff Lindsay:

Absolutely. Yeah. My vision is that, you know, when you're diagnosed, you're being told basically, you've got a painful, incurable, progressive, invisible disease of the autoimmune system. That's pretty bad news. Can we have some good news? Can we be told that out there, there is a yoga teacher who is qualified in yoga AS. Now the Arthritis Foundation in the States and here in England offer the class, Yoga for Healthy Lower Backs. They both set up courses for yoga teachers and for students with yoga for patients. So that the Arthritis Foundation is mainly for people with osteo and rheumatoid arthritis, the Yoga for Healthy Backs in England, it's not specific to AS so we need a kind of yoga teachers do and yoga students do short of that. I don't think it's right to say to people just go to any old yoga class, you need to get somebody who is qualified, experienced and on our Facebook page on our group Yoga AS you can join that if you have AS we have a series of resources on what kind of yoga is right for you, how to choose a teacher, how to choose a class, all of those things, there's a lot of detail in that. But basically find a qualified teacher, ring them up, speak to them, explain your condition to them. They may not know what AS is, and I have found this, so you do have to be extremely careful.

Jamie Boder:

Yes. So my points that there is, in terms of finding a teacher, sometimes it could seem overwhelming to be like, Okay, well, I want to get into yoga, and I've not done yoga before. It's a big step to then go and start, you know, trying to find people but the next steps you can do is reaching out to us. You can get to know what yoga can really be catered for you. You can join our community learn more about how yoga can can be modified to see your practice and then once you get the ball rolling, and you start seeing benefits and how you feel Then that's a real motivator to then go, do you know what I want to find a teacher in my local area, I want to find someone who can take this further. So with that being said, if you want somewhere to get started, reach out to me and Geoff, and then from there, we can work with you. But there's also, you know, there's some amazing teachers out there as well. One thing that to get, you know, the we're excited about is we're working on a series of whole yoga series, and online video series, which is very in depth, which will be another great resource to get started with and use as a tool for those who you know, and especially during these times, getting a teacher in person will fluctuate in difficulty. So having somewhere to start, if you're listening to this and thinking, Well, I have not done yoga, but this looks like something I want to do, you know, reach out to me and Geoff and you know, that's a great place to get started and you know, you can go from there. And with me, I found that because I started realizing how important this was. I took it very seriously. And I think once you realize the benefit, you will. And going back to Geoff's point about styles of yoga, we do advocate what's known as Hatha style of yoga. And that's because it's very much focused on understanding the movements and the correct alignment before jumping into them. That being said, I very much go by the mantra that if your body is able to move in a certain way, and you feel comfortable doing don't feel like you can't do other styles of yoga, but you need to start by understanding what works for you first, and that's where you need to start with a level that's very adjusted very basic. And then from there, your practice can grow and evolve.

Jayson:

And what's that style called again?

Jamie Boder:

Hatha, sometimes or sometimes pronounces Hatter, and it's essentially a call and response style. So the teacher will show you or show the student, the posture, the student observes. And then they will, the student will try it out for themselves. And that's why our videos, you watch the video, you look at the posture, and then once you understand it, you copy it, instead of just trying to kind of think your way through it. And that way you can emphasize safety.

Jayson:

Okay.

Geoff Lindsay:

Okay, so what we've actually done about that, Jayson is we've produced two films, one called First Steps, and the one called Next Steps. And Jamie has a version of those two and I have a version of them. And we're planning on another three, so we envison about five different levels in total. That was what we thought the feedback that we're getting is that we need something even simpler than First Steps. We need to do more stuff that's suitable for people who've, because of the pain; they have become sedentary in their behavior. So they're really starting at a point. Before First Steps, so we think we're going to have to do something there. People are asking for shorter videos, 10 minutes slots. And they're also particularly asking for yoga, which helps with pain in the sacroiliac joints. So we aren't just talking about yoga, we've already got four films out there that people with AS can follow. It's yoga modified, but we recognize that there are such a wide range of presentations. Comorbidities like hip replacements, like you can have osteoporosis, I have recurrent uveitis. So the Yoga has to be modified for the point that somebody comes to it. So Jamie was waiting, he came to yoga he was 19 still very, very mobile. For a lot of people in England anyway, the waiting time for diagnosis is about eight years. If you've had all that pain for eight years and like me, you had to stop playing football, running and dancing and all the rest of it. You don't come to it at the point where every other every person is of the same age. So we recognize there are different levels. That's why we've got those films and you can find those films either on YouTube at Yoga for AS, or on our Facebook group, which is also Yoga for AS. We've now got 360 people from around the world in our Facebook group.

Jayson:

And I honestly don't know as as I age and look at just the economics of Ankylosing Spondylitis. I don't know why when somebody is diagnosed now biologics are expensive and the medications are expensive. The lost wages are expensive. The disability is expensive. Everything around this disease is expensive to not only the person with it because it robs them of their life, their livelihood, and their current and potential future productivity. If I was a health care provider, you guys have the NHS National Health Data site. Yeah, here in the States we have different health insurance companies and so forth. I don't know why, Jayson, you were just diagnosed with ankylosing spondylitis. Here's a biologic and here's a prescription for a yoga class set up by the health company. Hey, if you want to stay covered, you have to go or some form. I'm not telling you to go out and play American football or rugby or soccer or something that I'm not asking you to go get hurt. I'm asking you to go spend an hour a week stretching. Go more if you want. You know, they could theoretically have an instructor in there five days a week you could go one day a week, you can go five days a week, you can, whatever it's open. And to me that would be far cheaper in the long run then continuously writing scripts for biologics, pain meds, disability policies, you name it.

Geoff Lindsay:

Yeah. And we would very much like I mean, Novartis are already doing series, Living with AS with the singer from something(Imagine) dragons. We think that some of the medication providers should be interested in what we're doing, because if we are helping the medication to work, there are better outcomes for those health care providers. And so it works two ways. If, for example, my anti-TNF medication which I take once a week, if that works longer, because I'm helping the medication to work, then that is better for those medications providers. So if there are any medication providers out there who would like to talk to us, we do need some funding, because we need to take this on to the next level. There is a global interest in what we're doing. Now we have had Facebook page grow enormously in the last six weeks, we've got hundreds of people and people joining every day from all over the world. And we have some very, very severely disabled people, not only people with AS, but also their husbands and wives as well, which is something, which is really important consideration. You will stick at something if you're getting support from around here. So if somebody says you've got to do this fitness prescription, but it involves me going off into my lonely room with my horrible diagnosis and doing something called exercises I'm not going to do it and people don't do it. But if you saying, I'm going to do this with your wife, then your wife understands about your pain and what helps you relieve your pain. And it's a nice thing to do. So, you know, we're growing here.

Jamie Boder:

Just add to that point you can practice knowing that there are other people out there they're also using yoga as a tool for AS, so you know, for example you might not be in a you might not be married, you might live on your own, but you can know that there's a community of people worldwide that are practicing Yoga for AS and that's a very empowering thing. And I think one thing that I really mean is Geoff is very passionate aboutAS you know, knowing that there is so much we can do, and a big step towards it is you know, a regular yoga practice in a way that is empowering. You're not in years sometimes people were given an exercise sheets and told to go and exercising, that's hard to stick to hard to be accountable. But when you have that level of accountability, it can make a big difference. So that's why community is very important. Even if it's virtual, it's still a powerful tool.

Jayson:

I see it satisfying two things because, as I mentioned with Geoff, the ability to get a prescription and go to a class, but also the the isolation feature, if once or twice a week, I'm going to a yoga class and not going from work and going home. I'm staying out mentally stimulating myself as well as physically stimulating myself and not falling into the doldrums of I'll just go home and sit in front of the TV and eat and I'll maybe I'll stretch but as you said there's no accountability. Whereas if I go out, and I even though that instructor is not going to flog me if I don't, you know, do my exercises, there's still that level of accountability. Because you don't want to look like the worst person in class, you want to look like you at least can, in some form or fashion, participate, but you want to belong. And again, I look at it more as a mental stimulation. And again, from an insurance standpoint and an NHS standpoint, the Canadian healthcare system, you might not end up on more medications, all of this works to try and keep you off these medications, which are expensive. They're just flat out

Welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week's topic is something has been a huge challenge for me this week fatigue.

But first, I want to welcome the new listener from Guatemala, which marks the 95th country that the show has been downloaded in. And also, don't forget to head over to spondypodcast.com to sign up for the Whenever I feel like it newsletter. I'm hoping to get one sent out next week. And check out the T-shirts and stuff available on the website. The items are at this time available in the United States and Europe, with more countries coming soon. Also check out the new facemasks I made available. I also wanted to thank a couple of companies that I've partnered up with to bring some great CBD based products. The first is Joy Organics. They're an awesome company that makes CBD based products made from 100% hemp from America that has all been organically grown. Also wanted to welcome Foria which makes an amazing CBD based intimacy oil. These two companies are fantastic partners with the show and I can attest to the benefits of each company's products. 

So let's talk fatigue. This week has been just quite the challenge. I've been just tired and worn out all week regardless of the amount of sleep I get. I do wear part of the night of C-pap machine when I sleep in my bed, but there's times when I get up and I go out and sleep in the recliner that I have. So I don't have a C-pap to wear out there. But I'm looking at like a mobile travel c-pap option, a smaller machine that I can keep in the living room so that I wear when I'm sleeping in the recliner. And it's just been an amazingly challenging week, even to the point where the thought of recording the podcast has just been really hard. Part of it is probably being cooped up from the COVID stuff and top that off with some fatigue and it's just been really a rough week. And I noticed that I'm not alone in those thoughts. I was going through the different boards on Facebook. And I noticed there's a lot of question about how do I deal with fatigue? What do I do? I can't get any energy to do anything. And so I was thinking about that and I came across this article on tips for beating Ankylosing Spondylitis fatigue. Some of these we may be doing as a collective group. Others might be something new for you to try. So let's see what we got here. 

Ankylosing, Spondylitis and fatigue. Well, Ankylosing Spondylitis is known for all the complications related to inflammation, the spine, the hips, you know, basically any of your joints that it can affect but primarily spine and hips. Well, the pain and discomfort may disrupt our daily activities. You could be contending with another debilitating side effect, which is fatigue. According to the National Ankylosing Spondylitis Society, fatigue is one of the most common complaints among AS patients. Excessive tiredness can be attributed to AS, but it can also be a side effect. 

Inflammation and Fatigue. The biggest culprit behind AS related fatigue is the inflammation. Inflamed tissues, whether it be in your hips, your spine, ribs wherever release a small protein based chemical called cytokines. Considered to play a major role in fatigue, pain, psychological disturbances, these cytokines are produced by cells in your immune system react in your body similar to those produced when you have a cold or a flu. This is why you may feel like you have a viral illness when you really don't it's just the fatigue. Treating inflammation with medications can help to reduce the excessive fatigue, but keep in mind that prescription drugs that contain opioids or coding may increase tiredness. Aim for sound sleep. In some cases, fatigue isn't exactly related to the inflammation. You know, the pain and discomfort can make it difficult to fall asleep at night, adding fuel to the exhaustion. Your pain may also cause you to wake up during the night. Here are a few ways you can ensure more a restful night's sleep: 

·      Try to go to bed at the same time every night. 

·      Take breaks throughout the day, instead of naps. 

·      Do relaxing pre-bed activities such as deep breathing exercises, meditate, I've found that I like to do some stretching, if I can, anything to try and get the blood flow moving a little bit before I lay down for the night.

·      Some people like to take a warm bath before bed. 

·      You could try adding curtains to your bedroom so that the sunlight is less likely to awake you. 

·      And then you could also try to regulate the temperature in your bedroom. That's a big one from my bedroom just it never heats up in the winter and it never gets cold in the summer. So it's always a bit of a challenge there. I tend to wake up sweating and all covered, you know, a mess because I just can't regulate the temperature in that room. 

·      Also, check for anemia. You know, inflammation from the as increases your risk for anemia. 

I'm always borderline anemic, so I have to make sure to take a lot of vitamins. My multivitamin every day and the anemia is a condition that is marked by a lack of healthy red blood cells, we know that these cells are responsible for transporting oxygen to the organs. Fatigue is one of the first signs of anemia. Other symptoms of anemia include frequent headaches, dizziness, shortness of breath, and finally pale skin. Anemia is diagnosed with a blood test. If you're diagnosed with anemia, your doctor may prescribe an iron supplement to help restore your red blood cell levels. Your doctor will also want to make sure you don't have ulcers or bleeding from non steroidal anti inflammatory drug use. 

Get on the scale. A lack of energy can lead to decreased activity and trigger weight gain. You know in this last month, I'm down about six pounds, but I still have 50 to go and I'm hoping that if I can lose some of this additional weight, even other 20 pounds, that that'll help with this sleep apnea and make that issue start to rectify itself and help to fight off some of the sleep apnea induced fatigue but being overweight presents many long term health concerns and can also make your AS symptoms worse. Extra fat adds more stress to your spine and worsens inflammation. Being overweight can also make everyday tasks more difficult to complete. So if you're still gaining weight despite eating right and exercising, you don't talk to your doctor, there could be something else going on there. You may also need further testing, like thyroid function tests to get to the root cause if you're just not able to lose any weight. Also, our medications can be notorious for either adding weight or keeping weight on I take a lot of gabapentin on a daily basis around 2400 milligrams and that I know can really add to the weight gain along with some other items. Dietary considerations weight gain often calls for changes to your diet. But when it comes to battling AS related fatigue, dietary changes mean much more than just cutting calories. Our focus as somebody with ankylosing spondylitis should be on eating nutrient dense foods, you know that will help you have a high energy all day. That's why I did if you look back at my first episode, I’ll have a link in the show notes. I did an episode with Vinnie Tortarich on the No Sugar, No Grains Diet, which is just getting rid of a lot of the bad stuff that we eat any given day and focusing on the right foods that will help us throughout the whole day. A big thing is if you drink a lot of soda. Try to swap that out with just water, you can pick up these different flavorings at the grocery store to add to your water so you can make it taste like whatever you want. Some of them have caffeine in it. So if you want to continue to add that boost from caffeine, they're all available so that's a great option instead of drinking sodas. Also consider if you're a coffee drinker, if you're putting all those you know creams and sugar and everything into that coffee, you're just adding extra calories that may be better used other spots and look at maybe drinking just a black coffee. I do know that Vinnie Tortarich talks about in the morning, adding a pad of butter and some MCT oil to the coffee to give you a nice sustained energy throughout the morning and into the afternoon. 

And finally, Some exercise tips. When you're on your last thread, you know, working out is likely the furthest thing from your mind, you're completely fatigued and just thinking about getting that energy up to do something is very difficult. You have low energy levels, and you just don't want to do it. But if you do, that little bit of exercise you can start off doing and increasing as you go along can help with future energy levels, and flexibility over time. Exercise is important for keeping your bones strong so that we don't get osteoporosis,  a disease AS patients are at an increased risk of developing later in life. So start with a short walk if possible, work your way up to longer higher intensity exercises. If you can swim swimming is a great exercise for people with AS. Also, you may find it easier to fall asleep at night if you've worked out that day. Just make sure you're not exercising too late in the evening, as it can actually disrupt your sleep. One of the things I do, or try to get done is, if I'm watching TV, when the commercials Come on during the day, do 10 quick push ups, and then get back up on the couch, watch my TV and next commercials, push ups, and so forth. So there's little ways to work that in. I also have a link in the show notes to some videos on beginner yoga. It doesn't matter what your mobility level is, if utilized, for example, the yoga for seniors, it starts off a lot of them in sitting positions that are very simple and allow you to at least start the exercise. So basically, the outlook for this is because there's no cure for AS. You know, we always are fighting these related symptoms, and you've got to really be diligent about that. If you frequently don't have enough energy to make it through the day, it may be time to reanalyze your current treatment plan with your doctor. You know, let him or her know what you're doing and they may have have additional options that you had thought of a different approach to treating as may be enough to keep fatigue at bay, above all else, you not try to remain positive and calm, you know, stress only as to the feelings of tiredness. So cut yourself some slack, try to get some more rest. Consider meditation and that yoga on top of food considerations. And, you know, we may be able as a collective group to fight this. 

So, thank you for listening. Check out the show notes again for links to spondee podcast calm to sign up for the newsletter. Also, don't hesitate to check out the Instagram page. If you're on Instagram, go to as_podcast and like the page and follow. So again, I hope you all have a wonderful week. I can't wait to interact with everybody and hear from you online. And your feedback means the world to me. So thank you for listening and have a wonderful week.

5 items to combat fatigue - https://www.healthline.com/health/ankylosing-spondylitis-fatigue#exercise

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Vinnie Tortorich episode - https://player.captivate.fm/episode/5e75cd34-5c1a-483b-a2b1-c36c60554850

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Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. This week I wanted to talk about chiropractic care. You know, that's probably one of the few topics that when brought up online will really can develop into some heated conversations about should you or should you not? And so I thought I'd take a little bit of a look at this discusson further, you know, issues around chiropractic care. 

With ankylosing spondylitis, we're all just trying to alleviate as much of the pain that is associated with ankylosing spondylitis as we can. And at its basic core, you'd think that chiropractic care would make a lot of sense since it revolves around the spine, the musculoskeletal system. And you'd think, wow, that really could be a good addition to my overall care. But you have to kind of look at it in the context of how much you're fused with Ankylosing Spondylitis. Back in 2015, the American College of Rheumatology recommended against the use of any type of spinal manipulation, which is one of their tenants of how they deal with you and how they treat you. But a study done in 2016 of patients that had seen chiropractors and then were later diagnosed with ankylosing spondylitis is that it was found that that chiropractic care actually pushed them to go see, to look further into their back pain. 3300 plus people with ankylosing spondylitis were looked at, and it was found that about 7% of those people were ultimately diagnosed by a rheumatologist and they had first been seen by a chiropractor. That was me, by the time I was diagnosed in 1984. I had been seeing a chiropractor for several years before that, and it was him that finally pushed me to go see a rhuematologist, and that was where the ultimate diagnosis of Ankylosing Spondylitis came in. So, is that a bad thing that they started off there? Maybe not. It's really going to boil down to how early in the diagnosis they were. 

The Spondylitis Association of America specifically advises against back and neck manipulation by a chiropractor. They think that it could lead to additional injury of the spine when you have spinal fusion, and that's a very solid concern. “Chiropractic therapy is often useful for low back pain, but I would not suggest it for a person with ankylosing spondylitis” says Dr. Allen Fox, a rheumatologist and Professor of Internal Medicine and Chief of the Division of Rheumatology at the University of Michigan in Ann Arbor. And as a side note, I did a whole interview with Dr. Fox, Episode Number 42. Back in March of this year, and I'll have a link to that episode in the show notes The Spondylitis Association of America also goes on to say the traditional hands on manipulations used in chiropractic care involve moving the joints around in order to achieve therapeutic goals, such as easing pain, and correcting alignment problems. However, people with ankylosing spondylitis may have joint damage that can become worse or result in a fracture with such forceful pressure for a person with ankylosing spondylitis. “The spine may have become fused in this makes it more susceptible to injury”, Dr. Fox says that's why people with ankylosing spondylitis who are interested in chiropractic care should find a chiropractor who has experienced specifically with ankylosing spondylitis, and using the gentler techniques. 

So what is chiropractic care? Well, chiropractic care typically involves as we've said manual therapy. It is including anything from stretching and sustained pressure to spinal manipulation. Chiropractors are trained to treat a variety of conditions but their focus is on improving joint motion and function of the musculoskeletal system. They often focus on back pain, neck pain, and pain in your arms or legs. The manual adjustments that chiropractors are most known for are usually paired with other treatments. This includes soft tissue therapies, lifestyle recommendations, fitness, coaching, and nutritional advice. The goal of spinal manipulation is to restore joint mobility and reduce inflammation and pain. And chiropractors do this by manually applying a controlled force to joints that don't move well. When performed by a trained and licensed chiropractor, spinal manipulation is generally safe, but as I said, you know some people especially those with AS should proceed with caution. Chiropractic care, and AS as we've said. “AS is an inflammatory disease and it's triggered by genetic susceptibility and environmental factors that are successfully treated with medications to target its inflammatory pathways”, explains Dr. Ronan Murmur a rheumatologist at Claremont Medical “Relying on a chiropractor for treatment of AS may not be sufficient” he adds. “The good news is that there are other treatments available for AS like anti inflammatory medications and biologics”, says Dr. Alan Conrad chiropractor in Montgomery County Chiropractic Center. He says simultaneously care plans with a rheumatologist who specializes in AS can be effective for managing pain. “The combination of low force chiropractic care, ergonomic changes, and concurrent treatment with the rheumatologist is an effective treatment plan for most cases of AS”, Conrad Conrad says, ergonomic changes, such as adjusting your chair or desk at work or at home can improve posture. This may help improve muscle spasms and tension associated with as this brings up a good point. Chiropractors can do a lot more than just spinal manipulation. If the chiropractor is applying therapy with massage, heat applications or a 10s unit. This could prove to be very beneficial, explains Dr. McHale, a pain management specialist and medical director at the spine Health Center at Memorial Carol Orange Coast Medical Center. 

But there are some risks and drawbacks of chiropractic care, as often causes fusion of the vertebrae in your spine, Dr. Conrad explains that those areas shouldn't be adjusted, as they're no longer movable joints. This is due to increased calcium deposits associated with AS. Conrad also believes that people with advanced stages of AS aren't candidates for chiropractic adjustments. If you go out to the Instagram associated with this podcast, and I'll have links in the show notes. I recently posted some pictures of my spine and it shows a very classic bamboo spine, a spine that would no longer be a good candidate for any type of chiropractic care, adjustments, or manipulation. So if you get x rays and yours look like the ones that I posted of mind, you really want to reconsider using chiropractic care or make sure that the chiropractor that you're seeing is very well versed in the treatment of Ankylosing Spondylitis, inflammatory back pain, the type associated with AS requires medical treatment. That's why Dr. Marmor says that his physical therapy and stretching play an important role in the treatment of AS. He tells AS patients to avoid chiropractic care with adjustments, particularly in advanced cases of AS but according to Conrad, chiropractic care can help keep the areas above and below fusions mobile with low force techniques. One example is activator methods, a chiropractic technique that puts very little force or rotation on the affected areas. 

With all that said, the goals of any ankylosing spondylitis treatment are to reduce pain, improve your quality of life, and delay spinal damage. If you're interested in how chiropractic care can help you achieve those goals. Your first step, you really want to talk with your rheumatologist. Together, the two of you can decide if a visit to a chiropractor and a complimentary review is a good stepping stone for you to move on. Your rheumatologist may even know some chiropractors that are very well versed in your area in dealing with ankylosing spondylitis, and be able to point you in the direction of one or two for you to go and talk to and they can also help you determine which type of stretches if you go to the chiropractor appropriate and then you know, they can also review any type of radiological studies that you've had done. So a chiropractor if you're in the early stages could be a very good person to add in to your treatment team along with the rheumatologist as well as an ophthalmologist. So just the takeaway for this is, you know, make sure that you're talking to all your doctors so that they all know what you're doing. Make sure that if you decide to go see a chiropractic doctor that you're letting your rheumatologist know that so that he or she can assist you with making sure that all of your limitations are available to be provided to that chiropractor before you even walk in the front door. And then you as the patient are getting the best treatment from everybody that you can, you know, whether it be 10s unit, or any of that other stuff that was discussed, you are able to best employ that so that you get the most benefit. So anyway, thank you again for listening. I hope you all will head over to spondypodcast.com sign up for the when I feel like sending it out newsletter. And again, thank you and everybody have a wonderful week.

Healthline – Can Chiropractic Care Help Ankylosing Spondylitis Symptoms - https://www.healthline.com/health/ankylosing-spondylitis/ankylosing-spondylitis-and-chiropractic-care#when-to-see-a-chiropractor

Everyday Health – Should You See a Chiropractor for Ankylosing Spondylitis? - https://www.healthline.com/health/ankylosing-spondylitis/ankylosing-spondylitis-and-chiropractic-care#when-to-see-a-chiropractor

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