Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. Well, welcome back to the show. It's great to have everybody listening and I wanted to do a couple things right up front. First, I got a really great review I wanted to share with you that came in via podchaser (see link at end of notes) and you can find a link to podchaser in the shownotes. If anybody wants to read further reviews, or even leave a review and hear me read it here. But this one says; Five stars. What an incredible resource. If you're newly diagnosed, or have been struggling with as for a while, you need to listen. Jason shares easy to understand information and conversations about the real life things we deal with. It's super positive Podcast, where you feel understood and empowered. Thanks, Jason, for all you're doing in the community. Well, thank you to the author of that review. That's what this is all about. I absolutely love it.
And on a side note, I thought I'd give you all an update on training of the dog. My math is is not the best and I come to find out. He's gonna be six months old. He's not six months old now. So Bandit is doing great. We're working on the whole issue of taking a leash from me and holding on to it for a while. He doesn't necessarily like to do it, but he's food driven. So I've started to incorporate a few treats in it to get him to, you know, be more excited about actually, the process of working and, again, I have to remember he's not quite six months old yet, so he's really doing well. He sits at the door, waits for me to go through it, and then comes out. Heels pretty good. Really the biggest issue is, he's a bed hog. He'll jump up in bed with me at night and try to push me to where he wants me at in bed verse, him settling around me so we have a few challenges, so to speak, coming up with a form of who's in control. Roll it at nighttime when we go to sleep. But outside of that, he's just been a fantastic dog, extremely intelligent, really wants to work hard and please. So it's the first time I've ever had a Labradoodle first time I've ever really been around one, and they're just a fantastic dog.
So with that on to todays show. So in today's episode, I thought I would really kind of take it back to some of the basics. I'm seeing a lot of people that are newly diagnosed or have a spouse or a child with ankylosing spondylitis, coming onto the forums on Facebook and asking lots of questions. This is by no means going to cover everything. But it's really good, I think, a starting point for a lot of people and a really good possible spot to reset for many of us that have had the disease for quite a while. So I'm going to start off with basically what is Ankylosing Spondylitis or as we talked about in the last couple episodes, using the terminology, axial spondyloarthritis, to be more inclusive of the people that have non-radiographic axial spondyloarthritis versus the radiographic. Listen to the prior two episodes episodes 50 and 51 so that you get a better understanding of that terminology that's becoming much more commonplace.
So, again, Ankylosing Spondylitis, we know is a form of arthritis that primarily affects your spine. It does affect many other joints besides your spine, but the spine is where they start to look for the disease in the beginning, and that in conjunction with your sacroiliac joints, are really the two primary areas that they try to focus on. It causes severe inflammation of the vertebrae. This can cause and might eventually lead to chronic pain and disability. In advanced cases, the inflammation can cause new bone to grow along the vertebrae and other areas and this can lead to deformity or what we call bamboo spine, the hunched over look. That's what you see if you were looking at a side view of me. Ankylosing Spondylitis can also cause pain and stiffness in other parts of the bodies, your rib cage, as I said, your vertebrae, your shoulders, your neck, your hips, of course, knees, feet, pick a spot where there's ligaments, muscle, tendon, and you're liable to have the ability to get ankylosing spondylitis there.
So what are some of the symptoms of AS well, they really can vary, and that's probably one of the hardest things for people that are newly diagnosed to come to grips with AS that come on and ask, Well, are you getting this? Are you getting you that? And they don't always like to hear that. It's really kind of sometimes put back at them of saying, “it depends”. You might, we didn't, some did, and some didn't. It's that's probably one of the hardest things to come to grips with. When you first get it as there are not the set criteria of, you've got Ankylosing Spondylitis, you're going to get these 2,3, 5 things, whatever those may be. So we do know though, that some of these things are more prevalent than others. And the most common symptom is back pain in the morning, but some people have it at night. You may also experience pain in large joints, such as the hips and the shoulders. For me, it's always been the hips. The hips are my worst spot on me. I've had multiple hip replacements, say that joints are all fused. So it's been like that since I was a young kid that's been the source of most of my pain, but other symptoms can include early morning stiffness, poor posture, stooped shoulders, loss of appetite. This comes usually when you're in so much pain that just the thought of eating doesn't even make sense. Low grade fever that presents itself and some, especially if their inflammation is out of control, weight loss. Now it could be the opposite of that to have weight gain. Because if you are taken out of the ability or function to be mobile, exercise, walk around, do the stuff that tends to burn calories, you can actually have weight gain. Fatigue is very common. I've done an episode or two on fatigue and that's just a never ending battle, I think for all of us with ankylosing spondylitis, tying into the fatigue is anemia or low iron, and then finally reduced lung function. And that can be as you're potentially having your rib cage fuse, you can see a reduced or reduction in the, the lung function that you have. That's one thing I've managed to do my whole life. My rheumatologist told me this when I was first diagnosed, I was 14. He said every morning when you get up, sit on the edge of the bed and do 5 to 10 deep breaths. You know, do it twice. So that's the one thing I've just kind of done. Really religiously, is to take those deep breaths every morning when I get up. And maybe it's helped. Maybe I was never going to get the fusing in my lung area. But I like to think that it's helped because ankylosing spondylitis involves inflammation. As I mentioned before other parts of your body can be affected as well. People with AS may also experience inflammation in the bowels, mild eye inflammation. If it's not taken care of that mild eye inflammation can become very, very bad inflammation, ie uveitis or, or iritis, and I've done several episodes on that checkout, I think it's Episode 49. It's very important to keep an ophthalmologist on call if you have Ankylosing Spondylitis.
Ankylosing Spondylitis is primarily a condition of the spine. It can impact other parts of the body too. And so it's just a disease that can run rampit through you once that inflammation gets going. So what causes ankle injury spondylitis? Well, the simple answer that is currently we don't know. It's unknown. This disorder can run in families. So genetics probably play a role. If your parents or siblings have ankylosing spondylitis research estimates you're 10 to 20 times more likely to have it as somebody with no family history. But I come from a family with no family history of it. So I was the first one. So the genetics are there somewhere. I don't know if they came from my mother's side or my father's side. But we have no history of anybody in the family having ankylosing spondylitis before me. So who's at risk for Ankylosing Spondylitis? Well, as I mentioned earlier, if you have a family history of Ankylosing Spondylitis, that's a risk factor, along with the presence of the HLA-B27 protein. According to a 2002 study now this is obviously old. More than 90% of people who receive a diagnosis this condition have the gene that expresses this protein. So, again, it's it's one of the markers that they look for. Not everybody that has AS has the HLA-B27 gene, and not everybody with the HLA-B27 protein develops AS, so it's just an item that could potentially make you more at risk. Age, unlike other arthritic and rheumatic disorders, initial symptoms of Ankylosing Spondylitis often appear in younger adults. Symptoms often appear between the ages of 20 and 40. Mine started when I was about 9 or 10 years old, and I was diagnosed at 14 and there's quite a few people I see on line that also share that early early diagnosis. Here's one that's been controversial for many years, Sex, ankylosing spondylitis is around three times more common in males, but is seen in females as well. And that's where this is dated, and some of the research has changed just in the last couple of years. Remember when I discussed Axial spondyloarthritis in the last episode with Mike Mallinson? Well in that episode we talked about that there's, if you have radiographic axial spandyloarthritis, you're then told you have as Ankylosing Spondylitis. If you have non-radiographic, it's left as non-radiographic, but it's still all the same symptoms, all the same pain, all the same conditions. Everything's the same, you're just not showing the fusing easily on x rays, as was mentioned in Episode 51, with Michael Mallinson, what they're starting to see come to light is that if you look at the radiographic axial spondyloarthritis where it's shown on the X rays, that's about two thirds men and one third women. And when you look at the non-radiographic, axial spondyloarthritis, that's about two thirds women, and one third men, when you mesh them up, you still get about an even one to one ratio of men to women, and it's just the way the disease starts and maybe continues to stay in women. So it I think watch for this over the next few years I think this is one of the biggest things that you're going to see rewritten and read discussed and rehashed is the amount of women that actually have it and may have been told they have a degenerative disc disease or something of that nature which is really not what they have. It's it's more of a function of non-radiographic axial spondyloarthritis. Ethnicity, this condition is more common in Caucasian descendants than those of African descendants or other ethnicities. But when you get online, you will see all ethnicities represented. So it might be more common in Caucasians, but you'll see everybody discussing it from across all racial spectrums.
So how is Ankylosing Spondylitis treated? Well, there's no cure for Ankylosing Spondylitis and anybody tells you there's a cure for it, is flat out wrong. There's ways to manage the pain, there's ways to prevent disability, especially with the medicines that are currently available to folks. And that's namely, you want to get proper timely treatment to help reduce that inflammation, that inflammation is what's going to do all the damage to you. And then once you reduce that inflammation, you can possibly stop the progression of the fusing, and any future damage that could come along from that and really lead a fairly normal life if your medicated and take care of yourself in the right way. Medications, the main one that everybody is usually started off with his non-steroidal anti-inflammatory drugs like ibuprofen, naproxen, things of that nature. They tend to be long acting drugs and are generally safe with few complications. I took them for a long time, Celebrex, ibuprofen, all of it I ended up with diminished kidney capacity. So at this point, I'm no longer taking any NSAIDs but they are the standard go to and I was on them for 30 years. When NSAIDs no longer provide enough relief, your doctor may prescribe stronger medications. Corticosteroids are commonly prescribed for the short term. This medication is a powerful inflammatory fighter so it can ease symptoms and slow damage to and around the spine. Then there are the tumor necrosis factor inhibitors, TNF. These are drugs like Enbrel, Humira, Remicade, they can block inflammation triggers in your body, you started to see these recommended much quicker in the process to again, better get control of that inflammation and bring down that inflammation and then use NSAIDs as something on top of it to help with what little pain might remain. So, the anti-TNF drugs like Enbrel, Humira, Remicade act to prevent inflammation and they may ease joint pain and stiffness surgery If you have severe damage or deformity like knee or hip joints, a joint replacement surgery may be necessary. Likewise, an osteotomy may be performed on people with poor posture that's caused by the fusing bones. During this procedure, a surgeon will go in and they'll cut the spine and and realign everything to try to straighten you back out. I've always been kind of interested in this and going to put a question out I think to see if any of you have ever had it. Go out to spondypodcast.com, use the Contact to shoot me a message if you've ever had one of those. I'd like to know the outcome. You know, treatment relies largely on how severe the condition is, and how troublesome the symptoms are. Somebody might never need anything done, completely control it by medication. Others could be quite far advanced and do just a number of surgeries to control what they're dealing with.
Here's a big one. Are there any natural treatments for Ankylosing Spondylitis in it? In addition to more traditional medical treatments, some natural remedies may help ease symptoms of Ankylosing Spondylitis. These treatments may be used alone; they may also be combined with other treatments. Make sure that's very important to talk to your doctor about which of these are safe to use. And if any of them are safe to use with any current medications you're on, and could something be substituted. Please, please don't just take people's advice from the website. Don't ever stop medications that doctors have prescribed you. Always talk to your doctor about them. But some of the options for natural treatment of it are, a.) Exercise, we all know that if you can walk any movement doesn't have to be going to the gym, just walk across your living room. Walk, you know up and down some stairs if you have them. Anything to get the body moving is going to be beneficial to you in both the short and long term. B.) Stretching is another important one; it can make the joints more flexible and help to improve your strength. And this can lead to less pain and better range of motion and your joints. So if it's standing up and standing straight against the back of with your back against the wall, push ups, laying flat on the floor, laying flat on a bed, face down or on your back, whichever way helps you to stretch. And if you have a spouse or a significant other, that can help you move your legs, move your arms, anything they're willing to do to help you stay flexible, and stretch is going to be beneficial. c.) Posture training, stiffness in the spine may encourage bad posture. Over time, the bones and the spine confused together in a slouching or slumping position. You can reduce the risk by practicing good posture. Because this may not come naturally after years of poor posture, you may need to encourage better posture with reminders to correct your posture regularly. Somebody might have to walk along and say to sit up straight, sit up straight. And, you know, get a good chair that's got a good back to it. A lot of times those items that you can wear that go around each shoulder and you pull your shoulders back, on your back, those can sometimes be more detrimental than helpful. So again, any of those posture correcting devices that you wear, I would highly encourage you to talk to your doctor before using something of that nature, d.) Heat and cold therapy. Now I don't respond to cold, but I do to heat so heating pads, warm shower, those can all help to ease some of the pain and stiffness in your spine and other joints. If you respond to cold and icepack might help to reduce inflammation in a painful joint, a knee, hip, anything of that nature. e.) Acupuncture, you know this is something I've really wanted to try. It's an alternative treatment may help reduce pain and other symptoms of Ankylosing Spondylitis. It does so by activating natural pain relieving hormones. Again, also go to spondypodcast.com and contact me if you've used acupuncture before, I'd really be interested to hear about it. And finally, I like this one; f.) Massage therapy, I love to have a massage done, where they really work hard on my back to get in there and push hard on my back. So, in addition to being relaxing and invigorating massages can help you maintain flexibility and approve range of motion. Be sure to tell your massage therapist that you have Ankylosing Spondylitis, they can be aware for the tender points around your spine. Many treatments for Ankylosing Spondylitis are also smart practices for a healthier life. So you know, just make sure that you discuss all of these options with your doctor so that he or she can go over them and say, which may or may not be beneficial and how to best incorporate them into your treatment.
Can diet help treat Ankylosing Spondylitis? Well there's no real you know, one size fits all diet for Ankylosing Spondylitis, you will see the autoimmune diet plan I that's not the exact name but it's escaping me. There's No sugar, No grains (Episode 3). There's all sorts of diets out there. And we're all going to respond to a little bit different things. But there are some, some basics to make sure to include in your diet. You want to try to include foods that are rich in omega three fatty acids, you know, fish nuts, and some oils. A wide variety of fruits and vegetables are good. Now, they talk about whole grains, but I actually I don't tolerate the different grains very well, and I know I've seen other people comment that they don't so it's really up to you and foods with active cultures as well. So things like yogurt are good. To a degree, try to limit some of your dairy intake dairy has been shown to increase inflammation. So if you like to drink milk and things you may want to consider cutting back on that if you can. Now cut down or eliminate foods that are, you know rich in fat sugars and salts. This includes anything highly processed. Box, bagged, canned foods are usually really high and chemicals and salts, and preservatives and trans fats, and all of those can make inflammation worse. Also, you might want to consider limiting how much alcohol you drink or avoided if you can. I rarely have a drink anymore. I do like to have a nice cold beer on occasion with the Mexican dinner but pretty much outside of that. The alcohol tends to have some interactions with my medication so I just I stay away from it and and many cases that may work best for you talk with your doctor about it.
Can exercise help Ankylosing Spondylitis? Well, the basic answer that is yes, Daily exercise doesn't have to be again, you don't have to go out and run a marathon. You don't have to be lifting heavy weights. Any type of movement is good. You know, do some squats at your kitchen table, use a chair, do some leg lifts if you can, some real basic yoga, deep breathing, stretching, swimming if you have access to a pool, lake, river wherever. Swimming is fantastic for Ankylosing Spondylitis. And then make sure to...