Episode 28 – How painful is IA?

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy

Debbie: This week we’re going to be talking about one of the toughest parts and also a very invisible part of living with inflammatory arthritis and that’s pain. Just a quick disclaimer, we are not medical professionals and it is from our personal experiences. But Katy, pain goes hand in hand with inflammatory arthritis. How do you cope with it?

Katy: That’s a very hard one, isn’t it? Because I don’t know if anyone really copes very well with pain. I think pain is such a sort of personal experience. I think we all feel it differently. We all might deal with it differently. When it’s really severe, I think it’s the hardest part of the disease. But equally, it’s that sometimes you’ll just have that constant dull pain. And that can also be tricky because it’s just always niggling at the back of your mind that something’s not quite right.

Debbie: When you had your symptoms, can you remember whether it was the pain first or the swelling first or was it both together?

Katy: It was mainly the stiffness and the pain, because I didn’t really get too much swelling. But then obviously for me with rheumatoid arthritis, the stiffness and the pain eased by lunchtime. But what I really struggled with was actually describing the pain.

Debbie: It is so hard.

Katy: Because I’d only ever had a couple of minor sporting injuries. I’d broken my fifth metatarsal in my foot, but that pain was completely different to the pain that I get with rheumatoid arthritis. I just couldn’t articulate to the GPs what it was that I was feeling because it was nothing I’d really felt before. I found it really hard. And I think I’ve got a relatively high pain threshold. Because when I broke my foot, I went into the office the next day with a black foot.

Debbie: Yes, my gosh, wow. Yes,

Katy: I just thought I’d slightly hurt it. And then I realized it was black and then I showed my boss and they said, I think you need to go to A &E.

Debbie: well, I think I have a high pain threshold as well. But again, it’s very hard because it’s very individual. I don’t know what, and I can’t feel what, exactly, because I do remember when I was about six and having this pain in my left wrist, it was just horrid. And again,

Katy: Yeah. You don’t know how anybody else feels it.

Debbie: Trying to explain that to doctors and everyone, it’s really hard, but I was watching the news the other day and there was this child on there and the doctor said, know, what’s your pain like? Cause it’s like a stabbing pain. Cause I’ve never been stabbed. How would I know? It’s like exactly. It’s really hard to.

Katy: Yeah, yeah, that’s true. Because people use stabbing pain all the time. And again, I mean, I’ve been maybe stabbed with a pencil at school.

Debbie: But it is that hard, I remember the pain, and then it was always a constant dull pain. don’t think it’s really ever gone away, even for me, even when I was then on long-term treatment, because I’m so used to it, that it is just constantly there. But I had so much pain in my right wrist last weekend and it makes you take for granted everything in life because I was doing a roast dinner. I think I just get the chicken out, I get the pan out, no problem. But then I’m putting the chicken then on the pan and then lifting the pan with the chicken in. I couldn’t do it.

Katy: Yeah. it, it’s that, because if I’m flaring, the areas where I’m flaring just feel really weak and fragile. So it’s not always necessarily the pain that I get bothered by, but I think of it, I’ve mentioned it in a previous podcast. I always feel like my wrists are made of glass and they could shatter at any moment. And it’s that kind of fragility and I still find it tricky. And if someone brushes past you, if you’re not flaring and you’re not in pain, that is fine. You wouldn’t even notice it. But like you’re kind of like, Seriously, it can only be the gentlest of things, it just suddenly the pain is just excruciating and it’s mad because. Like another day someone could do exactly the same thing and you’d pretty much not notice it.

Debbie: Yeah, because I must admit my husband’s been away for the last three days and he came home last night and then he’s like, just again, so just touching my hand and I was like, that really hurts. He was like, sorry, sorry, sorry. And I was like, you weren’t to know.

Katy: And it’s like, it’s like holding hands, because you mentioned it in the episode about JIA and schools, and you couldn’t hold hands because of the, the terrible pain.

Debbie: Yeah, yeah, I couldn’t hold hands.

Katy: and it was me when I was being diagnosed and I was playing tennis, I couldn’t understand why I’d been hitting a ball fine. And that sort of force that goes through your wrist when you hit a tennis ball, suddenly. It felt like my wrist was going to shatter. that’s the only way I can explain it. My bones feel like they might shatter if there’s another force that isn’t just me holding my joints together with my muscles.

Debbie: Yeah, I get that completely. And then getting back to last weekend, eventually my husband then had to cook the dinner, but then I couldn’t cut the dinner. And my daughter came around and she was like, I’ll cut your dinner, mum, for you.

Katy: you need one of those electric, have you got an electric knife?

Debbie: I wouldn’t even be able to hold it. It would have just fallen. just didn’t it was just it was just awful So thankfully my left hand wasn’t too bad so I could use that one So yeah, she came around and cut it up for me But for me what my worst pain though is in my eye when I have my scleritis flare up What part is it your wrist that have really? worse for you

Katy: Yeah. It’s my wrists. Yeah. And that’s where I’ll, if I’m flaring, that’s the first sign, even if it’s not, it’s not like a full-on pain, but I’ll feel I guess it is a dull pain that I don’t know. Cause again, people have all these terminologies for pain, but I don’t really know how to label my pain.

Debbie: I don’t either,

Katy: Like sometimes my thumb joints, or slightly, I guess, ache. Rather, I wouldn’t classify it pain, I’d just classify it achy.

Debbie: Yeah, because I suppose that’s what most people say when you like, what’s wrong with you? my arthritis. I get a bit of achy joints and that it’s just like it’s not.

Katy: Yes, yeah.

Debbie: because with my eye I won’t be graphic but I don’t know you’ve ever seen Terminator I want his eye and then my daughter’s like actually mum if you had his eye then you’d be able to cut your food with a laser it’d be like a laser eye that’s a good idea but I don’t want to get rid of my eye but that’s just how I feel when it it is so excruciating because you don’t realize how many times you blink during the day you just blink it’s natural you don’t realize

Debbie: But every time I blinked, was just, because I had nodules in the eye and was just, that was excruciating. But then I cry. Obviously when you’re in so much pain, you cry. That made it even worse because it was just, I just couldn’t get out of it at all. But I find that normal painkillers don’t even touch it. Do they you?

Katy: No, not like a paracetamol. No.

Debbie: No, and I then have been given stronger painkillers, but they space me out. I can’t take them.

Katy: I can’t take the one I think you’re thinking of. For that reason, I just end up completely glazed over.

Debbie: Yeah, it’s just like, still have, like kids still look after us, I still have a house, I still have work to do, even if I take them at night, then I feel like I’ve got the worst hangover in the morning. But is there any other thing that you do to help relieve some of that pain?

Katy: So I do occasionally use either ice packs and I’ve also used, the wheat packs that you put in the And I still, if I’m honest, I still don’t know for myself whether like hot or cold is better.

Debbie: I don’t know either. Sometimes, but then I feel really cold. I get very cold very easily. And sometimes if I then put an ice pack on, it just makes my whole body then freeze. So then I think I have something warm, but then is that just more of a placebo effect because I’m feeling that bit in myself? Is that helping or not? I don’t know,

Katy: I do, because Sarah was talking about it last week, I do think, baths can also be quite, just because you’re kind of relaxed. So I do think like with pain, it’s trying to relax, to try and help you through it and deep breaths, I do think there is a lot to say that kind of breathing.

Debbie:  Yeah.

Katy: Like through your nose out, through your mouth, is that the right way round, can help as well.

Debbie: Yeah, I’ve learned that through the breathing side. Because obviously when there’s some exercises that really quite tough. But then when she says do your breathing, actually it really helps. I suppose that’s what they tell you when you give birth, not that I gave birth naturally, but I suppose that’s what they say as well. Because it does and I suppose it distracts your mind a bit as well. And there’s other sorts of

Katy: It’s focusing on something else. So that’s the other thing, distraction. So either trying to get on with stuff as normal and just trying to ignore it, which obviously it doesn’t really happen with really severe, you can’t really do that with severe pain, but when it’s the sort of lighter, touch pain, which is all, I don’t know if you can call it that. I think distraction can help and just try and ignore it.

Debbie: Yeah, I must admit my distraction techniques, because what I was trying to do at the weekend last week was just to try and chill out that little bit. I did put my go-to TV programmes on or just sit there with earphones in and just listen to music and that, just trying to, it is that relaxation side, having something that gives you comfort, I think is that kind of comfort blanket for me that feels like, okay, I feel safe, I’m here, and it helps me get through it. If that kind of makes any sort of sense because I think that’s what you need as well because I think sometimes support systems, you know, they are fantastic but when you’re just going through so much pain, well for me, talking and just being sociable is just not what I want to do at all.

Katy: You want to take yourself off and if I’m in pain, I don’t really like other people seeing it. So I’d like, I like to just maybe go and sit by myself or watch a film by myself, that kind of stuff.

Debbie: Yeah, I generally then take myself to bed and go sit and look out the window and chill out a bit and let everyone else in the house do what they want to do. And I’m left alone. But it is, it’s that masking thing as well. And I think when I was going into the office and things like that each day, I did really mask it because again, it’s trying to get over to people how hard it is. you living with a condition that fluctuates and you know they don’t as you said Katy they don’t get that you know one day you’re fine and one day you’re not so I really did mask it all the time but I think that then made me then slightly grouchier and I think people picked up on that because you’re just that little bit more snappy I think.

Katy: God, yes, my mood completely changes when I’m in pain because even if I don’t mention it, I am horrible. Not horrible, but I get really irritated by things that might slightly irritate me normally and I can let them go. But when I’m in pain, nah, like I will tell you. Like, not, I won’t tell you I’m in pain, but I’ll tell you that I don’t like what you’re doing or that kind of thing, or I want you to do this. Yeah, my patience, I mean, I don’t have much patience anyway, but my patience completely goes.

Debbie: Yeah, bit more direct. Yeah, mine does as well. And I think also it ties in with the extra fatigue that goes along with it is working so much more over time that that makes you even more tired. obviously we mentioned fatigue last week and that’s something, you know, a misconception we really do want to try and get rid of because fatigue isn’t just tired. It’s exhaustion. It really is. And then having to still show up and do everything day in day out. It’s just like you need to give yourself a break though.

Katy: It’s like feeling like you’ve had a vomiting bug, like all the time. That’s the closest thing. I’ve never had the flu, so I can never really associate it with the flu. So I always think like a vomiting bug where you’ve just been vomiting for 24 hours and then you’re just completely wiped and zoned out.

Debbie: Yeah, I’ve had the flu a few times and it does feel like that and also I’ve had vomiting bugs as well. So yeah, one way to describe it would be, but it’s constant. You know, your fatigue is then just constant. I just want to go to bed earlier. Usually, I go to bed around 10, half 10, go and sit and watch the TV. But I want to be in bed by about half eight, half nine maximum and just.

Katy: That’s really good because I’m horrendous for just sort of sitting watching crap. However tired I am, I can’t be bothered to take myself upstairs to bed.

Debbie: Really? Did you ever then fall asleep on the sofa?

Katy: Yeah, that sometimes

Debbie: As I try not to do that because that’s not good for my joints. I know that now. I’ve done that a few times and I’m even more stiff in the morning I just can’t move. So I do always try to get myself to bed. But is there any other things in general day-to-day life that you use that kind of helps with pain

Katy: So I think it’s a hard one because it depends on the pain severity, but I do think gentle movement can help alleviate pain, but not when you’re in, and it, because I guess for me, it’s my wrist that predominantly will get hit with pain. So, I can still say go for a walk because I don’t really use my wrists. As I said, I wouldn’t want to end up brushing past a fence or be… But this is the other thing, sorry, just to completely diverge. Do you think when you’re in pain, you end up clumsier? Or is it because you feel the pain more, you feel clumsier? Because I always think, like when I’m in pain, I’ll end up like hitting the bit that’s in pain constantly or bumping it into something, but am I doing that all the time and I just don’t notice? Or is it, because I’m in pain, I suddenly notice that I’m like clouting my hand on like a door frame constantly?

Debbie: That’s a really good question because this week I didn’t realise my husband had shut our French doors and I think I tried to open them not sure what I did but I just ended up whacking my swollen painful wrist into glass and I was like what? But would I have done that without being in pain? I don’t know maybe I just thought it was open and I was just about to go out but it does make you that much more aware I think because

Katy: Yeah.

Debbie: The other thing also was when I was off going on the Tube into London and I was in that much pain, was so… I really sort of huddled myself very close in and when it was my elbows and people were trying to, you know, get your elbows out so you can get on the Tube and I was like, no, my elbows aren’t going anywhere. They’re like closer to me than anything else. But that’s a good question though. And I don’t know the answer.

Katy: No, well neither do I which is why I’m asking it.

Debbie: But then, it’s a good one. I think I’m generally clumsy in life anyway. Yes. Don’t think I haven’t fallen over touchwood recently. But then I’ve lived with JIA for so many years, I don’t know.

Katy: Think we’ve picked that one up. Well, that’s the thing. So pain is just like a day-to-day thing to have to deal with, which is bonkers really. because you’ve been in pain more than you haven’t, which is really sad.

Debbie: Yeah. And that was, I must admit that was hard dealing with that. And I think then being a stroppy teenager, I think my parents probably got the brunt of it all. Because I think there was a few times it’s like, why me? Why am I living with this pain that I can’t get rid of? No one seems to understand it. And I suppose I had to go through the stages of adaptability and actually then. Realizing that this isn’t going to go away. I probably have it and then one doctor did say well because you were diagnosed late, even though had it for so many years, but they’re like you were diagnosed later . Even though I was eight It would never go away. I and so he was just like this is gonna you’re gonna have this for life and it’s like right how am I gonna cope with this for life? And I think that life always throws you curveballs, I think and you do always find a way out of them, however hard. And it’s trying to give yourself, and I think what Sarah was saying last week, is just give yourself that time. Take it slowly and just do what is right for you. Listen to your body, which I was doing all the time. And it is, I think because also then so many people just didn’t understand that then I was in pain constantly, that I just, and my doctors told me to deal with it. And then eventually I did it in my own way because I then did have loads of stomach issues because I was constantly on anti-inflammatories and that as well. So then had to come off that because that was just making me feel even worse on top of everything else. think, well, you know, life and living with IA, as we’ve always said, is a balance. And it was balancing the pain and feeling utterly rubbish. And it was just like I can probably live with pain more than that because I suppose I was trying to control how I felt with it and I did have counselling when I was at uni how to deal with it better.

Katy: Yeah. And so we had someone come and talk to us at work about it was focused on men’s mental health, but the gentleman who was speaking was talking about, you can’t be resilient in life unless you’ve had something that you’ve got to get over and not get on with because I think that’s a problem from the eighties and nineties of just cracking on and getting on with stuff. But I think you’ve got to have some life knocks to actually then appreciate things.

Debbie: Completely, and that’s what I think if anything it’s taught me that I don’t take, I try not to take anything for granted. I think I’ve mentioned this but now because of my hands have been so painful, I don’t take for granted it is for me to make a cup of tea those and to cook dinner and things like that. And putting washing on the usual life things and typing at work. You know, it’s just things like that.

Katy: Yeah, because I remember when I, when I was first diagnosed, like the wrist position on the keyboard, what they call the department that will give you like extra bits that’s the one.

Debbie: Occupational health side.

Katy: Yeah. I got loads of little gadgets and things to kind of help me, but you don’t, if, you know, I hadn’t had the pain, I wouldn’t appreciate the fact that actually being able to type on a laptop is quite a privilege.

Debbie: Yeah, I learned to play the piano, which I think was the best physio for it, thinking when I was in pain at the weekend and obviously even now, but then to look at me, you might not think I am, but I am in so much pain. It’s trying to make sure that you keep that movement going because the swelling makes it even that much more stiff as much as it’s stiff in the morning anyway. And it’s just trying to get your mindset to go, okay, I can do a few exercises just to keep the movement going, just to keep the joints lubricated and everything, but that causes more pain. But then you know it’s good for you. So, it again it’s that balancing act, it’s so hard.

Katy: Yeah, it’s that I don’t think you should push yourself when you’re in pain or when you’re fatigued, but it’s that doing a little bit will actually be helpful, but it’s, something that you’ll get wrong a lot.

Debbie: Yeah. Again, it’s all trial and error and I think this is where you say the resilience come in because you learn what is good for you and what’s not good for you and yet and really don’t push yourself at all when you’re in pain.

Katy: so, all of this is so personal that something that works for me won’t work for you and vice versa. But some things that you do might be helpful to me. you

Debbie: it is. Exactly. It is that thing. It’s that community side that we’re trying to bring out in these podcasts as well is that everyone’s journey with IA is different. But there are things that I’m learning from you and from the people that put their comments on social media, their hints and tips as well. But it’s just trying to not to go, OK, that doesn’t work. I’ll give up. It’s not. It’s that didn’t work. What else can I do? And that is what builds that resilience. As you say, you need those knockbacks in life to keep you going. And it is, but it is tough. must admit living with IA is never straightforward at all. And it’s all these invisible symptoms and the side effects that no one really ever talks about. People just assume pain. I’ve had pain. I’m fine now. You’ll get over it sort of And those comments really don’t help.

Katy: There’s a lady in my office at the moment, actually, and she’s suffering with really bad sciatica. And I can really properly empathize with it really, because I know what it’s like to every day be faced with the fact that actually her sciatica one day she’s coming and she’s saying, it’s fine. The next day, it’s absolutely horrendous. So I get this completely.

Debbie: Yeah, actually, I will just say there was one time I was in previous work many many years ago and I was saying about my arthritis it’s flaring and she’s all yeah, not great. I’ve got it worse. I’ve got I’ve got really bad toothache. I was like, what? Okay, to think fair enough, I’ve never actually had problems with my teeth. But assume it must be extremely painful but then I thinking just go and get your tooth out and you’re fine I can’t take my limbs off you know this is something I will have to live with apart from if I then got a terminator arm I was thinking if I got terminator arm that’d be great, metal would be brilliant but then I was thinking

Katy: No. Yeah, that’s a good one. Yeah, I did used to want to have my hands chopped off. was like, everything would be easier if you just chopped off my hands.

Debbie: I actually said that at the weekend, but then I was thinking, please don’t anyone ever do that because with our immune systems, it will find something else to attack.

Katy: Yes, actually that’s very true.

Debbie: So  it’s just how you process that flare, I think, and the pain that goes along with it. But knowing at the back of your mind, you’ve done this before, you can get through it and you can get through it again.

Katy: Yeah, one final thought actually, just something that sprung to mind is sometimes when my joints are really bad, I will wear like a wrist support. Because I find that that compression and actually, we’re going into winter now. I do have like compression gloves because I do find that they help support. Everything as well as I guess giving that warmth to my joints.

Debbie: Yeah, I did actually wear a wrist support at the weekend and during the week as well. Again, I think it’s because it felt so fragile

Katy: When it gets slightly knocked, that’s what really kind of hurts.

Debbie: Yeah, yes it really does so i kept moving my fingers in it but if i moved it a little bit at an angle it was just excruciatingly painful now do have them and i have one for the left wrist as well so it’s just it but it’s that systemic side of it that it why both sides you know because then

If one side’s bad, the other one I know will be bad and you try to overcompensate and this one swells up and it’s just, it is it’s not great. I hope there’s something that you can relate to in this episode. We know that pain is a very hard subject to talk about and it’s not talked about enough really and actually how much pain that we go through, especially when we’re flaring or even pre diagnosis that we live in that pain constantly and then getting that diagnosis and then give in the time for the meds to work and everything. It isn’t a short term fix, but you know, there are people out there, there is support. And obviously, you know your body. If something isn’t right and something you’re flaring for longer, please go and talk to your medical team. But thank you so much for listening. Please do rate and follow the podcast wherever you get the podcast from. And also follow us on social media. We are on Facebook, Blue Sky, Instagram, and LinkedIn. And now also on YouTube, where you can actually watch the video of the episode. Thank you so much for watching and listening and until next week it’s goodbye.

Katy: Goodbye.

Episode: How painful is IA?

In this week’s episode of Inflammatory with Debbie and Katy, the hosts open up about one of the most difficult and often invisible aspects of living with inflammatory arthritis: pain. From describing what the pain actually feels like, to coping mechanisms that work (and don’t work), they share their personal journeys with honesty, humour, and resilience.

This conversation covers everything from the daily frustrations of flare-ups, to how pain affects mood, fatigue, relationships, and even simple tasks like cooking dinner or holding hands. Debbie and Katy also discuss practical tools like wrist supports, heat/cold packs, breathing exercises, and distraction techniques that help them push through the tough days.

 Key Topics in This Episode

• Why pain is so difficult to describe — and how doctors don’t always “get it”
• The difference between constant dull pain and sharp flare pain
• Coping strategies: from ice packs and warm baths to breathing and distraction
• The impact of pain on mood, patience, and social life
• How fatigue and pain often feed into each other
• Gadgets, occupational health, and supports that make daily life easier
• Building resilience and finding community through shared experiences
• Learning not to take everyday activities (like typing or making dinner) for granted

 Takeaways

• Pain is highly individual — no two people feel or describe it the same way.
• Distraction, relaxation, and pacing yourself can be as important as medication.
• Support systems matter, but sometimes solitude and self-care are what’s needed.
• Living with IA means constant balancing acts between movement, rest, and resilience.

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