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Flares - Know the Symptoms and how I Dealt with Them
Episode 6423rd August 2020 • The Axial Spondyloarthritis Podcast • Jayson Sacco
00:00:00 00:26:30

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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,...