For the 2nd Part of this 3 part series, I discuss some first steps in treating Axial Spondyloarthritis.
Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. How is everyone doing? I hope this finds that everyone is having just a wonderful week, I really, really enjoy, you know, getting my message out to everybody. And, you know, getting all the feedback and listening to everybody and the connections that I've made. So I really appreciate everybody's input into what's going on with the show. And if you want to give me yours, go out to spondypodcast.com and use the Connect page to send me a message, tell me what you're thinking, tell me what you'd like to hear. I'd love to know what it is. And also, while you're out on spondypodcast.com at the very top, click on the Review tab. And then once you do that, it actually says Reviews. There'll be right towards the top it says rate show, click on there and leave a review on Apple podcasts or Podchaser, it really does help on either one of those for making the show discoverable by others. And you can also if you know somebody with Ankylosing Spondylitis or Non radiographic that does not listen to the show, send them a link to spondypodcast.com so that they too can participate listen.
So with that on to todays show. Well, last week, we talked about being diagnosed with axial spondyloarthritis. So this week, I wanted to take a bit of time to talk about some of the first steps towards treatment of axial spondyloarthritis. And I'm going to leave you with four things that I want you to focus on. Again, whether you're brand new, or whether you've been dealing with this for a while, either one of these can help put you in a good spot as you go forward with your treatment of axial spondyloarthritis. Now you might be listening to this and saying, but Jayson, I don't have axial spondyloarthritis I have ankylosing spondylitis, or I have non-radiographic. Well, those two terms are kind of being combined now to really talk about this overall arching disease called Axial Spondyloarthritis, which encompasses both non- radiographic and ankylosing spondylitis. Think of it as a spectrum. On the left side of the spectrum, you have non-radiographic, because there's no visible, fusing yet in your x rays or MRIs. As you progress along that spectrum and you start to fuse, you then go into ankylosing spondylitis. So instead of trying to keep two separate diseases, two separate types of charts about what medications work for each one, because in a lot of cases, the same medications work across the board. But there are medications that are approved for ankylosing spondylitis that are not approved for non-radiographic. So if you just have one overarching disease, axial spondyloarthritis, it allows your medical team to have a much easier path for treatment for you. And that's really what's important.
So, with that, Number One, just what we talked about Learn all that you can see we said there's two types of axial spondyloarthritis, the non radiographic, and the ankylosing spondylitis, there are symptoms and treatments are virtually the same. So that's really why it's important to go to one disease name. In that way, it makes sure that we're all covered by that same type of treatment plan. The only difference, like I said, is that with non-radiographic, you don't see any type of fusing showing up on the X rays, but the pain is all the same. And it usually starts in the joint at the base of the spine. In mine, it was the sacred iliac joints, those were the first to start fusing, and mine started when I was about 10. Everybody else is gonna start different, but just remember that that's really what you're looking at is generally pain starting in the base of the spine, but it can show up in other joints, shoulders, knees, feet, you know, ribs, spine, anywhere, you know, certain connective tissues can also be affected. This often happens at say, your heels, where it makes it painful to walk on hard floors. I can remember Oh, I was probably 19, 18-19 right in there, woke up one day and could not for the life of me walk, borrowed crutches from someone and ended up having to miss a week's worth of school, and my roommates were bringing me food up from the dorm because I just could not walk. And as soon as that came, it went away. Neither rhyme nor reason it just it was what it was. So you never know where the pain is going to strike, how long it's going to come and what area is going to be affected. You know, another one is your eye problems like uveitis or iritis. That's very common with axial spondyloarthritis. So one of the things is you want to make sure that you have an ophthalmologist as part of your treatment plan, as you're part of your doctor's team that ophthalmologist generally If you tell them, I am a patient with axial spondyloarthritis, I'm susceptible to iritis and uveitis. My last bout was at this point, and you walk through it with them, they can work with you and usually get you in, you know, they'll squeeze you in, if you tell them you're having eye problems. With that, oh, I did a really good episode a while back with an ophthalmologist, whose practice was specifically on eye redness, and so forth. And I'll have a link to that in the show notes (www.spondypodcast.com/48). And that was really a good plethora of information on that. So, again, look through the past episodes, there's a lot of good ones out there that can get you going to learn about this disease.
Number Two - Start exercising, doesn't mean you have to go join a gym doesn't mean you have to start trying to run marathons. Personally, my body wouldn't do that. Yours might not either. Some do some have taken up marathon running. And I applaud you for being able to do that. That's fantastic. But you'll want to start some type of exercise. My recommendation is to go onto Facebook and join the group Yoga for AS, the two gentlemen that run up both have ankylosing spondylitis, they are both very good at showing from very basic to very advanced techniques that you can incorporate and start exercising, you can do walking around your living room, walking around your block, anything to get up and move. The more you move, the better your flexibility, the better you do. If you can swim, have access to a pool, lake, whatever, that is fantastic as well. Exercise, keep your spine flexible, and upright. That's one thing I suffer from is being hunched over. You don't want to get like this, you want to do everything in your power. When you're newly diagnosed. To keep your spine flexible swimming, like we said, yoga, tai chi, Pilates, they're all great because they stretch your back, cardio, weight training, and posture training are vital as well. But sometimes some of those items your body might not want to do as much anymore. So again, listen to your body and do what you can do. But don't try to over push it. And then finally, if your doctor recommends a physical therapist to work with you, you know they can help you put a well-rounded program together. And then don't miss those physical therapist appointments. Go to them as often as your doctor tells you to that can you know help you get your exercise going as well.
Number Three - Partner with your doctors, you still have to be your best advocate for treatment of you. But you need to build a good team of doctors. You want an ophthalmologist, you want a rheumatologist, you want a primary care physician. And I would suggest an orthopedic because you may at some time need some type of surgery, if you can put those four together, and they can discuss, talk and work with each other for the betterment of you, your treatment will go a lot smoother, when every doctor sharing the same notes and seeing what's going on. That shared decision making that comes from your healthcare team all working together can just make your overall treatment plan with axial spondyloarthritis just flow so much better. So they'll all know about things like and says medications that you're taking, and how that all fits together and how the plan works. So on top of that, you yourself, want to have a good doctor patient relationship where the doctor can trust you so that he or she understands why you're asking for a pain med, what you will get what you won't get. And that way you both can respect why each other are making the decisions that you're making. And that doesn't mean that you have to just accept every decision the doctor makes. It's completely okay to question. If they say no to this, ask them why you might find out that there are adverse reactions to another medication you're on. Or you might find out that they've not thought about it if you bring up a medication to them. So you have to have that level of communication open where you can ask your doctor things they can ask you and you can both go back and forth and discuss your treatment plan. Remember, that's what it is, it's your treatment.
And then finally, Number Four - Stay Connected. That's both in the virtual and the real world. When you have a chronic illness. It can make you feel lonely, isolated, and depressed. So to avoid that, stay connected with families, stay connected with friends, talk with others, whether it be pick up the phone, text, get on line, you find out and build your support community, make sure it's a combination of in person, and virtual. The great thing about the virtual community is you can build up a group that you talk with that is dealing with the same thing. You are are all dealing with axial spondyloarthritis and they can understand what you're saying is going on. Where when you talk with the real people, the people that are around you on a day-to-day basis, they might never have heard of axial spondyloarthritis. So they don't understand what you're going through, but they are still your support network. So make sure to foster and nurture both of those.
And with that, thank you for listening to this week's show. Again, it's great to connect with everybody. Please go out to spondypodcast.com, leave a review for the show, sign up for the newsletter that's really important. Please sign up for that newsletter when it pops up there when you go on to the page. And I hope everybody has a wonderful week. And I look forward to talking to you next week on The Axial Spondyloarthritis Podcast. Take care