Episode 34 – What causes IA flares?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: And Katy.

Debbie: How was the Laser Quest party, Katy?

Katy: I can say is from the second I walked into the place; I was just overstimulated. We had 13 boys. they have two 20-minute sessions in the Laser Quest room and between that they’re just let loose in the arcade area. And my God, just seeing 13 boys and now they’re at the age where parties are kind of drop and I was like, oh, well, if I lose one, I was petrified Because they were all just all over the place. But the staff were absolutely amazing, actually. It was hilarious though, because when we got to the cake and candles bit, the aircon blew out the candles before. And I could not be bothered to relight them because the staff said you want to relight them. And I was like, no, they’re just going to blow out. You can just pretend it’s fine.

Debbie: Gosh, did he have a good birthday though?

Katy: No, he had a brilliant time. Yeah. And then they also do a little VR session. So, it’s like roller coasters. It’s going into Jurassic Park. It’s really good. Really perfect. And then we did pumpkin picking on Thursday. And then on his actual birthday, we went to a place which has bowling. We did some rock climbing and mini golf. it’s one of these new activity centres where they have loads of stuff. So, it’d be great for like an adult’s night out as well. Cause there’s darts, there’s curling, there’s shuffleboard. It was so much fun, but I was absolutely exhausted yesterday because I’d had three days of kids, fun.

Debbie: Wow! Yes, I must admit, I was always looking forward to the day after in the nicest possible way because kids parties and just having so many kids around you can be so exhausting because as you say, you’re then responsible for so many children and actually you don’t want to lose anyone you want to make sure they’re okay. but what we’re going to be talking about today is what causes us and what triggers us to flare. And I suppose one thing there is stress, but I suppose that’s a positive stress, isn’t it? Cause you know, your son’s having a great time. The kids are having a really good time, but I think that’s more of a positive stress, but that still causes me to have a bit of moment.

Katy: Yeah. That’s a good way of putting it. And to be honest, actually, it was on Saturday night after his party. I did feel very fatigued, and I had that slight sick feeling where you just feel so tired. You feel a little bit sick. So, everyone kept on saying to me, I’ll have a glass of wine when you get home. And I was like, no, that’ll make me feel a hell of a lot worse. So, I’m okay, thanks.

Debbie: Yeah, sometimes that just doesn’t help. All you need is that sleep. Because I remember when we had Sarah on, living with rheumatoid arthritis is the episode title. And she said the main thing for her is sleep.

Katy: Yep, 100%.

Debbie: I completely agree with that but there are so many things that then causes you not to sleep. If you do have, whether it’s a positive stress, or just a stress in life, your body is doing so much more overwork and obviously our immune system’s working overtime anyway. So it’s like so much is going on in our bodies that it really can’t cope. It just needs that sleep. But then because there’s so much going on, it then can’t sleep. So it can be that vicious circle.

Katy: Definitely. I did, on Saturday night, I did go to bed probably quite early for me, because I’m normally quite a late bedtime person. But occasionally, like when I know I need it, I will put myself to bed early. you’ve just got to listen to your body, haven’t you, in these situations?

Debbie: You do, yes. Because what causes you to flare? Do you know what triggers you?

Katy: I think it’s a massive combination of things. So, I think it’s overdoing it. burning the candle at both ends. So, if I’ve been really busy, really active, but also not getting much sleep, I think that is something that can potentially trigger flares along with as well diet, that balance of exercise. So, I mean, it’s a complete multitude of factors and I don’t think I’ve ever nailed down specifically what the kind of key trigger is. I think it’s a huge combination of different things all working together. I love the terminology cycle of doom. You keep going around not getting enough sleep, doing too much, maybe not eating very well. And then that just forces your body to have enough and give you a flare. How about you, Debbie?

Debbie: I think so much. Because I’m actually flaring at the moment. My ankle is so, I couldn’t even put, you know, tracksuit bottoms that have elastic at the bottom. I can’t wear them at the moment because it just feels like it’s just cutting my ankle. So, I had to change trousers. I can’t put shoes on at the moment, so I’ve got slipper boots on. I think because the reason I’m flaring is stress. I am in the middle of moving house, which I think if anyone has done this, it is not straightforward. It is very stressful and trying to pack up the house and everything as well. So, I think that has caused it, but I thought I was more on top of it. But I haven’t slept well for probably the last couple of weeks, I don’t think. And I think that on top of everything else and I don’t know, just trying to eat healthily. But then sometimes with that circle of doom, you get so tired, you just need that little quick pick me up. So, I think it’s just, as you say, just so much altogether that goes on. But I must admit, yeah, had my feet up last night, I just sitting there watching the telly and I just felt my ankle and my husband was like, your ankle looks like a funny colour. And I was like, yeah, it’s just really, and it was so hot. I was just thinking, well, I’m sure it might not, but I might’ve just accidentally twisted it or something, but no, it was just so hot and just so swollen. And then it’s my nemesis of getting upstairs to bed and it’s like, its

Katy: You actually don’t want to bother trying to make the effort, you sometimes?

Debbie: No, I really don’t. Another reason we are moving is that I will have a downstairs bedroom, which is great. But it’s just like, so much. There’s just so much that goes into why you flare. But then also I have found, and I know most people never really talk about it, but I think we do need to, is grief. That can really cause my body just to go, what is going on? I thankfully, haven’t had grief recently, but I do remember it was many years ago and I had three people very, very close to me die within a very short amount of time. And this is when I was working in London and I had to phone my boss up the day after to say, look, I can’t walk. My body is just having a full-on meltdown. I just couldn’t physically walk. My hands were also swollen, and I just had to literally lay and rest and try to process everything that was going on in my head. and, and in my body as well. And I think grief does that to you as well, whether you have inflammatory arthritis or not, you know, you feel sick, you feel it’s just how your body copes with it. And I just think having that extra on top of IA just made my body properly go into one and it just, it does feel like it is attacking itself from the inside

Katy: And I guess it’s other big life changes as well, isn’t it? whether it’s money stress, whether it’s redundancy, as you say, moving house, things like, I guess this is more of positive stress, but again, things like weddings really like big life events can make your body really struggle with the disease. And I think just general, like healthy people would also struggle with those life challenges.

Debbie: Yeah. I can’t remember, I got married many, many years ago, but I do, I think had some on and off flares. I think there were just some sort of trigger points that was actually just too much. It was just too much for me. And I just thought, I just can’t cope with this. But it’s then taking yourself out of that situation and actually thinking, okay, if I can’t get that cake. Is it worth it? Is this a stress worth it?

Katy: Yeah. My father-in-law baked our cake. I didn’t do flowers. I just did fake flowers. And then we just went to a local florist the day before the wedding and just got a few flowers to decorate around. Although my husband didn’t understand pastels. So, I did have a little bit of a meltdown, I won’t lie about his lack of knowledge of what pastel means. It isn’t a bright colour; it’s a pale colour. And table decorations we just did ourselves. So, I kept it quite low key and easy rather than, because also the cost of a wedding is quite stressful because the costs just suddenly go up and up. I dread to think what it’s like now because I got married just over 10 years ago. And guess the other thing is things like having a baby. Quite often people flare after that. I mean, I myself was fine through pregnancy and I ended up, it was more a gradual increase in my symptoms, which again probably links to things like hormone changes, and that’s the other one. Hormones, I think I’ve always noticed a slight difference, and I think we spoke about this in one of our very early episodes is sort of just before my period is due, I know that I will sometimes just feel I don’t always flare anymore, but just sometimes feel a little bit iffy.

Debbie: I noticed it in my knees. They do get very, very achy. And when I was a lot younger, they were really, really painful. But now it’s just the achy side and I’ve learned that that’s what it means. So hormonal changes completely. And we will be having someone on talking about menopause as well. That’s something obviously that we go through. But also, I want to hear the male perspective on that as well. If you have IA and your wife doesn’t, but she’s going through menopause, does that stress cause you to flare. But I also find if I’m coming down with even just a cold, a day before my body, are painful, they’re more stiff and they do ache so much more. Do you find that?

Katy: I don’t get ill.

Debbie: I know, this is I’m so envious of you.

Katy: that often. I can’t really say whether I do or I don’t, if I’m completely honest. I also haven’t really flared for a good couple of years properly. I’ve had some niggles, but I wouldn’t classify those niggles as a full-on flare-up. I did get something weird actually on Thursday, my thumb, and I don’t know if it was like a weird infection or something in my thumb, but my thumb was really painful. I couldn’t work out if it was a bit of an inflammatory arthritis flare beginning, cause to touch it just was really sore. So was really strange and then it disappeared within two days. but also when I used to flare, I wouldn’t get a big swollen hot joint. I’d just get more of the pain. So, I never really swell that much. So, I think I experience flares in a slightly different way to the classic symptoms that a doctor might expect to see.

Debbie: Sometimes they can feel very hot to touch. Other times they just feel slightly warm. And also yeah, the swelling because when it’s in my jaw, I look like half a hamster because it looks like I’ve got one puffy cheek and one not so much. but it’s, that’s interesting though, that you don’t have those.

Katy: No, but then sometimes when I’ve had my DAS score, my disease activity score done, the consultant has said I am slightly flaring in places, but I haven’t really recognized that I am. I guess it’s just how everybody has a slight difference in how they feel things.

Debbie: Yes, because actually, that just brings it back to when my daughter once went to her appointment. We did know her; I think it was her knees and her ankles. That’s where she mainly has it. But when they were doing the whole-body examination, they’re like, oh, you’re flaring in your elbow. And I was like, oh, my God, as a mother, I thought, I should have known this. How was this happened? And yeah, so the guilt then just went on me completely, which again isn’t a good thing because that can cause me to flare and everything. So, it is managing all of that.

Katy:  No. And that must be quite stressful for you. mean, like, you’re not just caring for, I mean, all parents are caring for their children, but you’ve got an added anxiety with her disease. How, does that affect everything?

Debbie: I think now looking back, thankfully she is in medicated remission. So, she seems to be doing okay. So, I can now talk about it, but before it would be like, no. It really did impact me so much. And I think than I ever let on. I have mentioned it. I think again, one of our very first ones when I said that my daughter has this, I did have depression with that because it was the guilt. I couldn’t get over that guilt. But it was learning how to try to manage what I said to her, I think, was the key. Because I kept saying, oh, how are your joints after school? How are you? Are your joints okay? And as we moving house, we found loads of stuff and she actually wrote a letter to a friend. She obviously never sent it, but it was saying, I’m so fed up with my mum asking me every single day how I am. And I was like, okay, sorry, but it was there from the best intentions. And I think that obviously then helped us have a very open relationship. And I think she kept saying, mum, just don’t ask, I will tell you. But again, I think I’ve mentioned this before, it was just, we can just look at each other and we know, we don’t have to say anything. We’re learning how to deal with it. I won’t ask her, she knows if she needs any pain medication, any anti-inflammatories. I feel that she needs to learn how to deal with that and cope with that herself. I can’t be with her throughout her life, and she has been traveling, and she will be going to uni. I think it is so important to try and empower children as young as possible to learn how to cope and process what their body is going through. Because as much as I want to, I can’t and it will just annoy her and it’ll make it all a lot worse. So, and I, I think that’s something I’ve learned from that though, is for me to take a step back and actually look at how I process and cope. Cause I hate the word manage. I really do. It’s just how you cope and process everything that’s going on in your body and you learn from it. Cause I think if you manage it, you don’t learn from it. So, it’s just learning every time I flare.

Katy: That’s a really good point. When you manage, you’re not actually learning and then you’re not actually coping and thinking about what you can do each day. Yeah. Sorry, a bit of a light bulb moment. I now kind of get why you don’t like that word.

Debbie: Yeah, that’s why I don’t but anyway, I think for anyone who is having a flare, you do have to take that step back. Listen to what is good for you, whether you write a diary or not, I probably should do, but then I don’t like going back and just living that moment again, but that’s just me. I do think they are a good idea and afterwards, what have you learned from that? Okay. I’ve learned that, yes, buying a moving house is stressful. It is inevitable, but is there anything that I can try to control in all of this uncontrollableness? I can’t control what my solicitors are doing or estate agents.

Katy: Yep. You can control what you’re doing. Yeah.

Debbie: Exactly, and I think that’s what is helping me. But I was just trying to think if there’s anything else that you do when you’re flaring or when you think you might be flaring. But I know you don’t flare very often.

Katy: No, because I mean, when I flare, I know just holding a mouse or touching the keyboard is horrendous. So, it is just trying to learn to take that rest when you need to. It sounds so easy, but it’s not so easy to actually do when you’ve got a family, you’re working, you’ve got commitments that you’re committed to. You’ve got to, manage doing things you still want to do whilst also managing the flare and your condition. So, it’s quite, I think it’s a really tricky balance. And I don’t think many people can actually get this right. You’re always going to be learning and making mistakes. But I think it is that, because when you’re in so much pain, you really can’t do anything. But then the problem is to try and help. I sometimes think it’s good to take your mind off the pain. So sometimes continuing kind of doing easy tasks or watching a film, watching TV, things like that can help you take a step back and essentially distract you from what’s aggravating you. But I get really frustrated, really angry when I’m in pain. So, it’s just so hard. I think it’s really hard to even take a step back. Again, all these things are so easy to say, but actually doing them is a completely different matter.

Debbie: Yeah, I must admit, I never used to at all, but I am learning so much more now. And I think actually just talking to you and hearing our other guests, that’s really actually helping me to learn what other people do. But I am trying, as you say, it’s not easy and it is hard. After 40 odd years, I should be now learning to take a step back and actually go, it’s not the end of the world.

Katy: Yeah, but it’s also knowing, like you might know what triggers a flare, but also they can just happen without any reason. So there’s not always a rhyme or reason for why they happen. So, you’ve got to be, sometimes you could go, God, I shouldn’t have done X, Y and Z. But you don’t know that that’s actually what triggered your flare. I don’t think anyone ever can. You can have a educated sort of guess as to what’s triggered you based on kind of knowing what you’ve done in the, I don’t know, the week, the 48 hours running up to it, but you’ve just got to give yourself a bit of a break that it just happens when you’ve got these diseases and don’t think, should I, could I, all those things. Just, you’ve just got to move forward on where you are.

Debbie: Yeah, and that’s what I’ve been trying to get over to my daughter as well, because I think there are two ways I could have gone down that road. It would have been like, right, look at everything you’re eating, we’ll do a food diary we’ll do this diet, we’ll do, you know, how much exercise can you do, should you do? But then, I feel that the IA will be taking over our life. And actually it’s not. Life happens, know, grief, redundancy, happy stress, bad stress. All of that is a part of life. And if you try to protect your child or even yourself from going through that, that’s not living for me.

Katy: You miss out

Debbie: You really do. And life is for living. This is what I’ve learned completely. And yes, I don’t plan mainly for these reasons as well, because I don’t like letting people down. But then I also would like to do these things. And if I would like to go, I would do my very best to say, yes, I’ll be there. I’m not then feeling sorry for myself or taking it out on myself because again, I think this is what we are also very good at is blaming ourselves. As you say, if I didn’t do this, I could have done that. It’s just life and don’t beat yourself up either because your body’s doing that to yourself anyway.

Katy: Yeah. And it’s also being like having self-empowerment to say no to things, but equally, as you say, say yes to things and think about what you can put in place to try and mitigate the risk of a flare.

Debbie: Yes, completely. think that sums it up. Do what you can, but just enjoy life, as well. And actually, we did have a really lovely comment come through from someone saying, these podcasts are great. They’ve just been diagnosed and they thought that was it. Their diagnosis is it, but actually they’re now learning that you can live beyond your diagnosis. You will have these days that you flare and you go, it feels like a complete step back to square one, but you’re not. You’ve learned so much from that flare already. And it’s just trying to, when you’re in that good place and you’re not flaring. And I know most people then don’t like to think that they have IA at that time because they’re in a really good place, but actually that’s the time to look back and say, right, how did I cope with that? How did I get through that? And just give yourself that pat on the back to say you got through it. And if you can get through that, you can get through other flares. But then obviously if you are flaring for such a long time, please do get in touch with your because shouldn’t happen and you don’t want any long-term damage going on either.

Katy: And when do you normally get in touch with your team? Because I’ve quite often, if it’s been going on for two to three days, I’ll call up and see if I can get something to help. But I don’t know what do you do?

Debbie: That’s good question. probably within two weeks, I think for me, if it goes on longer than a week, I’ll be like, right, okay, nothing’s working here. But I do try all the distraction techniques. But then I suppose I don’t want to know if it’s done any long-term damage. suppose that’s a bit of naivety and ignorance, I think, around that side. But then yes, it’s probably around a week or so I will then get in touch to say.

Katy: Okay, so I’m much shorter, but it’s probably because it doesn’t happen as often. So yeah. And then I know that normally it’ll take a little bit of time to actually get to see somebody.

Debbie: Well then what do they do?

Katy: Quite often they’ll then prescribe me something to help depending on the severity and how I’m doing. But I know when I was postpartum, I went quite a lot.

Debbie: Yeah. If I do phone them up, they will then do a steroid injection.

Katy: that’s quite often what I’d end up going to have. Or a weekly course or a week’s course of oral steroids.

Debbie:  Yes, they did that a lot with my eye when that was partly flaring and other anti-inflammatories. So please do get in touch with your team. They will know what to do and how to help you

Katy: Do you still have a nurse helpline at your hospital?

Debbie: I do. It’s an answer phone. So, if I phone up, they will get back to me within, I think it’s 72 hours now. Yes, I try not to phone on a Friday.

Katy: Ours is much better. Ours is, yeah, ours is 24 hours. So it’s so interesting. It’s so different.

Debbie: It really does vary a lot. but yeah, that’s, but that’s what they’re there for. if you are in extreme pain, please do contact your team and they will get back to you.

Katy: Yeah. Leave an answer message and email them. So that’s my trick.

Debbie: Fair enough yes if you got an email that’s helpful as well but just closing and if someone is going through a flare at the moment what would you say to them?

Katy: Think I’d say, you you’ve got this. I’m sure you’ve probably flared before. take the rest you need and get the support you need, whether it’s from friends, family or a medical professional.

Debbie: Yes, I would say the same. So, I’m actually going to go back and put my feet up, literally my ankle to kind of stop the swelling because I can feel it like pounding at the moment.

Katy: Yes, I can actually tell you right now what to do. Go and have a rest.

Debbie: Yes, but it’s also, I do find it very important to just do some gentle exercising with it though. Otherwise, it will get so stiff and then that’s then part of that vicious circle. But Listening to your body is so important. And I think again, Katy, we’ve shown that we both have inflammatory arthritis. Our journeys are very different. Everyone’s body is different. But we will be getting more guests on our podcast. That is something that we’re definitely going to be doing because we do want to hear from other people and their IA journeys as well. But please do rate and follow the podcast wherever you get your podcasts from. We are on social media. are on Blue Sky, Facebook, LinkedIn and Instagram. Again, please do like, follow and comment where you can. You can sign up to our newsletter. It is at inflammatoryarthritis.org. Have a look through our website as well. And until next week, Katy, it’s goodbye.

Katy: Goodbye.

In this week’s episode of Inflammatory with Debbie and Katy, the hosts dive into a conversation that every person living with inflammatory arthritis can relate to, what causes a flare and how to cope when it hits.

From birthday party chaos and moving-house stress to hormones, grief, and sleepless nights, Debbie and Katy share their personal experiences, insights, and practical coping strategies. They explore the “cycle of doom”, when life’s stresses, fatigue, and overdoing it collide and discuss how to break that pattern with self-compassion, rest, and a realistic approach to living well with inflammatory arthritis.

This honest, funny, and heartfelt chat reminds listeners that while flares are tough, they don’t define you and you can still live a full, joyful life beyond diagnosis.

🗝️ Key Takeaways:

• Stress is a major trigger: even positive stress like birthdays or weddings can cause a flare.
• Sleep is crucial: fatigue and poor rest often make symptoms worse.
• Hormones, grief, and big life events can all affect inflammation levels.
• Listen to your body: rest when you need to, without guilt.
• Don’t blame yourself: flares sometimes happen for no clear reason.
• Empowerment over management: learn from each flare rather than just “managing” it.
• Reach out for support: use your rheumatology team’s helpline, and don’t delay if pain persists.

🔗 Resources & Links:

• Inflammatory Arthritis website & newsletter
• Follow Inflammatory with Debbie and Katy on
  • Instagram | Facebook | LinkedIn | Bluesky

If this episode resonated with you, please rate, follow, and share the podcast.
Your support helps others living with inflammatory arthritis discover they’re not alone and that life goes on, even through the flares.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/