Flares - The Basics

Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. How is everybody doing? I hope when this message reaches you that you are doing fantastic and tackling every challenge that life throws at you head on. Today I was going through Instagram. And as many of you know, just a few weeks ago, I had on a really, really great guest named Steff Di Pardo. She's an author, a young woman with ankylosing spondylitis and dealing with everything that comes along with it. Her Instagram page is called totallyfunkless and I'll have a link to it in the show notes. Please go out and give her page a follow. She's really an inspirational young woman; she had a post out there that talked about that she's having a flare. I can certainly empathize as, as we all can. We've all been there and gone through them and come out on the other side of the fire as stronger, better person for it hopefully, hopefully, that everybody's like that.

But she posted “that photos from a flare up. My goal here is to be as honest as I possibly can be about this disease. This is one of those times when it gets the best of me. And that's okay. I'm allowed to cry when my pain levels are bad. I'm allowed to feel grief and sadness, and whatever I want to feel I'm having a very hard time this week. I do not love my body right now. “

We can all relate to that. We've all been there and my heart goes out to you, Steff, like many have said to me, I wish I could take that pain from you and bear it for you. It will hopefully one day lower for you, subside to a lesser level. That seems to be what happens for many folks that have had it for a number of years that start off when they get really young. So I hope that becomes something that you experience as well.

Flares are a terrible thing and that's what we're going to talk about in today's episode. And again, go out to totallyfunkless on Instagram, a link will be in the show notes and give Steff a follow, her page is really good. She's got really great content and read her book. There'll also be a link to her book in the show notes. It's a really, really good collection of stories about dealing with chronic pain and how she's dealt with get up and through this point in her life. So again, she's just a fantastic person, feel free to reach out to her and talk with her just a nice nice young woman.

Also, yesterday, I got a really cool message from  Colin Burns, who lives in Glasgow, and Collin wrote,

“Hi, Jayson. I just wanted to start by saying thank you so much for sharing your experiences with the world through your podcast, I got diagnosed with AS, after 12 years of fighting with doctors, (I live in the UK) I got diagnosed and told to go search Google for it. So 10 minutes later, I was sitting in tears reading Google saying, I will end up in a wheelchair. Sitting in hospital car park for a month, I was so low social low with nowhere to turn, I drive for a job, he says, and I just happened to come across your podcast while driving and listening to your life story. And the drive you still have and the fight you have gave AS all your life gave me the strength to stand up and give AS the middle finger. I just want to let you know that you made a difference. Thank you so much.”

Well, Colin, thank you. It's because of listeners like you giving me feedback that they enjoy the show and find benefit in it, that I feel that I've been able to help somebody that's really all I ever want to do. When I was diagnosed, there was no Internet. As I've said before, there was no nothing, so as a 14-year-old kid, I was said you have Ankylosing Spondylitis. You know, a pat on the back, Good luck, we'll monitor it. Here's some naproxen. That was it. So you deal with the pain. I kind of glad that there wasn't all this to explore back then, because it allowed me to tackle the disease the way I wanted to tackle it. But at the same time, I wish that I would have had access to all this information. So that I would have known to do things like join the group Yoga for AS, practice yoga, practice meditation, doing these things to help try to give a better quality of life going forward. At that time again, there was no biologics, I'm a big believer in them. I know some people aren't, but I am and had they been available back then, I’d have been all over try them. So all I want everybody to take away from these is if you're in pain, and you need somebody to talk to reach out, whether it is myself, or any of the other. There's a great community on Instagram, go on to Instagram at house_of_spoons. There's just so many the list chronicallyJoanna, there's tons of them out there that are great people that will help you deal with what you're going through as you help them deal with what they're going through. It's a great, great community of people.

So with that, today's episode is going to be about flares. Now I have to be honest, it's been a long time since I've had a really bad flare, as I've gotten older and more fused to the point where just about anything not fused on me as my neck that the flares have become much much more less severe and much more infrequent. I just don't have them as much, one, maybe two a year and they're minor at that. But what is a flare? What do you need to know when you're having one? Well, the symptoms of a flare can be fatigue, fever, and pain in our joints, you know, shoulders, back, hips, ribcage, and an enthesitis. All of those can be potential symptoms of you having a flare, then there's local and generalized, local meaning it's just my lower back is flare like crazy, I can barely move or generalized, I feel like a truck hit me and I hurt everywhere. There's a number of treatments available, it can be NSAIDs and steroids, gentle exercise like yoga, heat or ice, a TENs machine or in some cases, even nap, you know, taking a nap and resting that can help but most people with AS can report that they have a flare, fairly common. And the other thing that comes into play with the flare is the emotional symptoms that you have. You can be all over the board. So I came across this article out of Creaky Joints, and I read it I thought it summed up a lot of what we deal with. And it goes on to say flares unfortunately, come with the territory of managing chronic arthritis, like Ankylosing Spondylitis, Axial Spondyloarthritis, Non-radiographic, you know, all of them, AS is an inflammatory disease that primarily affects the spine and the SI joints. It can also impact other joints such as the ankles, knees, neck, as well as caused inflammation of the emphasis. That's the connective tissue, where tendons and ligaments attach to the bone. So when we look at this, you know, people that have AS tend to have fairly consistently chronic low back pain, pelvic pain and hip pain, and then a flare can just send that into the stratosphere it, it can take it from manageable pain to just where you want to sit and cry. The intensity level just goes through the roof. Research indicates that flares in AS are very common, and one study found that AS patients had about one flare a month, each flare lasted about two weeks. Another study found that 70% of AS patients reported a flare in any given week. So it's common, you're going to deal with these and various levels and they're just part of the territory, and it stinks, but it is what it is when we deal with this thing called axial spondyloarthritis.

So the flares can sometimes be awful, or they can sometimes be emotionally taxing, or sometimes all of the above. And that is just something that really when you're going through one can just be as many of you are aware of emotionally draining. So with that gentle exercise, stress management, listening to your body, and the right medication treatments can help you through these periods of flare-ups. If you have as you can't prevent a flare, you can only deal with it, manage it, and help prevent the long term consequences of it says physical therapist, Maura Daly Iverson, and she's a spokesperson for the American Physical Therapy Association, and says here's what to expect from as flares and how to deal with them. And we talked about types of layers. Based on patient surveys and self reported experiences of flares. Researchers characterize two main types of as flares as you said the localized and the generalized, the localized or where the symptoms affect one primary area causing pain, immobility and fatigue. Whereas as the name implies, generalized flares are more severe and may affect multiple parts of the body. In addition to the above symptoms like pain, immobility and fatigue. they also could induce flu like illnesses, fevers, sweating, hot burning joints, muscle spasms, and sensitivity.

So what are some of the symptoms of a flare? Well, first and foremost, many of us are going to recognize back pain and stiffness. As with many types of inflammatory arthritis a flare is marked by an increase of normal disease symptoms. So if a patient is experiencing worsening back or back pain lasting more than a few days, then it's likely a flare says rheumatologist Joan Appleyard. In addition to the back pain and stiffness, fatigue is another item that will be generally much more ramped up during a flare. And as the flare takes its toll on your body with inflammation increased and everything working against you. Your body fatigues much faster, it wants sleep, but sometimes sleep means lying down in the joints then sees up It seems to make it worse. So that fatigue can really come on strong. And it may help to be thinking of maybe napping up to three times a day, even if it's just a little half an hour nap here half an hour nap there that may help you alleviate some of that fatigue. If you can do that short term nap. You also can have pain and other joints. Could be your shoulders could be knees could be ankles, ribcage anywhere that you can have an attack, that pain might increase. So be very cognizant of that as you're dealing with everything. If that would you know if it's striking you everywhere those generalized flares are are really something just atrocious to deal with. The other thing that comes into play is depression. That's one thing that I think those of us with axial spondyloarthritis have to really watch for, there was a study done that said 75% of patients noted that emotional symptoms, such as depression were part of their flare symptoms. We all know that chronic pain can be mentally as well as physically debilitating. And we really need to watch ourselves so that we don't kind of slip into a dark spot. And that's where community really becomes important and that community might be through social channels like Facebook or Instagram, please go out to my Instagram page as_podcasts, or any of the other ones that I'll link in the show notes. All of those people are really great. And I encourage you to start to form a online community with all of us so that if you have issues need to talk, you know, you can reach out and we're all here for you. And then finally, there can be fever, as your body's fighting it. It can be almost like a flu type symptom where you, you get an elevated temperature, and you just feel rundown because the fatigue, so make sure to call your doctor if that happens. It could be something else besides a flare, but at least the doctor can look at you and help you determine what's going on. So what causes a flare? Well, nobody's 100% sure yet, but Dr. Appleyard said in a study that patients reported the main perceived triggers of a flare were stress and overdoing it. She said keep in mind; stress may mean both physical stress such as an illness or emotional stress. Excess fatigue may also trigger a flare. Unfortunately, he said beyond that experts don't really know what causes as to flare. Iverson who's the physical therapist goes on to say we truly don't understand all of the aspects of the inflammatory component. Environmental triggers are less clear than in other inflammatory arthritis, for example, like rheumatoid arthritis. So how are as flares diagnosed? Well, doctors can rely on you know your experiences so far in determining if you're having a flare. Also, there are two indexes that patients can fill out a form on to look at and one's called the BASDAI i think is how they say it, and it's the Bath Ankylosing Spondylitis Disease Activity Index and the BASFI, which is the Bath Ankylosing Spondylitis Functional Index. These two questionnaires measure the major symptoms of Ankylosing Spondylitis, like fatigue, spinal pain, joint pain, swelling, inflammation, morning stiffness, etc, and the patient's ability to cope with everyday life, then a rheumatologist can use these measurements to help determine disease activity and to assess response to the treatment. So as Dr. Appleyard, in addition goes on to say, as symptoms as a whole are related to increased levels of certain cytokines in the blood. And so blood levels of these substances are closely correlated with the activity of the disease. Dr. Appleyard says.

So what are some treatments for flares? Well, there's medications, things like NSAIDs, like ibuprofen or naproxen can help to address the inflammation. Sometimes you might use steroids medications like prednisone if it's really bad case, it's a potent anti-inflammatory. And it's used for severe flares, not responding to like n sets. But and sets are considered the first line of therapy. I personally can't take them anymore because of some kidney damage. And I do have a standing order for prednisone, but I haven't used it in years, the pills probably aren't any good anymore. I do take a biologic drug, and that is usually used in conjunction with things like NSAIDs, to help keep you under control all the time biologic drug seems to help keep everything under control right now for me. And like I said, I have flares once or twice a year, and they're minimal, but knock on wood, three plus years of biologic use, and I've had really good luck. You could also use gentle exercise and this is where things like Tai Chi, modified yoga, maybe an elliptical machine, depending on your capabilities, you know, walking, some range of motion exercises, and I think it's really important go out and check out the Facebook page Yoga for AS,it's run by two gentlemen who both have Ankylosing Spondylitis one is in his 20s. The other is in his 70s, I believe, and using a gentle approach of yoga, they have both been able to keep fantastic qualities of life. So I highly recommend that you check out the page yoga for as, again, I had both Jeff and Jamie on a few months ago, and I have a link to their show in the show notes so that you can go and listen and see what we talked about. It was really quite an interesting deal what they've done with yoga. There's also heat and cold therapy, you know, you're gonna know what your body responds to listen to what your body says. For some people, it might be something like a cold shower, others a warm shower, could be a nice hot bath to try and soak up you know, with some Epsom salts to try and loosen up whatever works best for you. And then last but not least, is the Trans Continious Electrical Nerve Ttimulation, also known as a TENs unit, and this is a machine where you put the little patches on your muscle where you're having some of the pain, and you use an electric current to help kind of manage the nerve signals that are coming through that area and try and offset them a little bit so that you feel better. Sounds kind of scary, but it's not actually quite a few people use it like it, I had a TENs machine for years that I used.

So what are some tips for coping with as flares? Well prepare for it. So when it comes to the flare, you know, an ounce of prevention is worth a pound of cure, so to speak. Although you can't actually stop a flare from happening, you can make sure to keep up with your exercise plan, practice that yoga, learn meditation, all of those things can help. You know, there's also some strength training you can do. I've talked about that, in the last episode of starting a weekly exercise plan, it could be something as simple as just doing some push ups during commercials on TV, getting up and walking around your living room in your house, whatever it is, you have to start somewhere. So let's get going. And I'll have a link to that in the show notes. I want you to listen to it and follow along with what we're trying to do over on Instagram, develop your own pain management techniques. Otherwise, listen to your body do what your body thinks is best for itself. So if there's certain things you can do in yoga, and certain things you can't do, don't do them, it doesn't mean that Yoga is not working for you, it just means you can't do that particular pose, I have lots of those because of the multiple hip replacements I've had. But doing some is better than doing none. So focus on the parts of your body that you can exercise that you can put a little bit of stress on him to help build some muscle, tone up some muscle, get your metabolism running, you know, look at meditation I did Transcendental Meditation doesn't mean you have to do it. But there are a number of different options available right on YouTube for you to learn meditation really easy. So I have a link in the show notes to some of those to make it really easy for you to go out and find them. Also create some time in your routine in any given day for some rest. Now, maybe you can't rest every day at the same time. But maybe on your weekends, whatever those days are off that you make sure you fit in a couple of short naps half an hour to an hour, the middle of the day, or late morning or late afternoon, whatever the time, you can fit it in, that best works for your schedule. Maybe you have a spouse, or a partner that helps with some of the food preparation or goes grocery shopping, or takes off some of the chores off of any list so that you don't have to deal with them. And it's less stress; it's less thinking about it. So it's easier on your body.

Finally, manage stress and mental health. You know, in addition to the mind, body, you know, there are strategies for pain management, like we talked about what the TENs machine, maybe it's go to a pain management doctor, if your pain is really severe, educate yourself about the disease, go on to the different forums on Facebook, you know, talk with your doctor, talk with them and let them know about flares and anything that you might be able to do in advance to be prepared when a bad one happens. So you're not calling them in the middle of a flare, you're able to handle it. And then if it's really weighing on you with depression wise, like I said, reach out to any of us or seek a mental health professional, which is fantastic to do. You can go and find any number of therapists for any different reason and talk with them about what's causing stress in your life, what's causing other issues outside of the house that might be triggering to it and causing you to have a flare. So take advantage of any type of mental health plans that are available to you and use them.

So with that said, I want to thank you all for listening. Again, we're wrapping up 2020. It's been a crazy year. But I'm so glad to have everybody on board and listening. I really appreciate it. Go over to spondypodcast.com. Go ahead and sign up for the newsletter, you'll get a pop up when you log on that I'll talk to you about going in and sign up for the newsletter and the new shirts, check out the store where all the shirts are I went through and we did that whole section with the new logo. And I think some of the things look fantastic. So get yourself a shirt deal with yours flares in style, so to speak. So again, thank you, everybody, and you have a wonderful, wonderful week, and I look forward to talking to you soon.

Creaky Joints article episode based upon – https://www.creakyjoints.org/living-with-arthritis/ankylosing-spondylitis-flare-ups/

The Axial Spondyloarthritis Podcast Instagram Page - https://www.instagram.com/as_podcast/

Steff DiPardo’s Instagram - https://www.instagram.com/totallyfunkless/

House of Spoons Instagram - https://www.instagram.com/house_of_spoons/