Rebecca

Age at interview: 20

Age at diagnosis: 18

Brief Outline:

Rebecca has been diagnosed with mono-arthritis. Her right knee is the only place that is swollen and painful. Rebecca is not convinced that she has arthritis because the medication does not work and when her knee swells the fluid contains blood.

Background:

Rebecca works in customer services. She is white British.

More about me...

Rebecca has been diagnosed with mono-arthritis. She was almost 21 when she was interviewed.  Rebecca’s right knee is the area which causes her a problem. Just before her 18th birthday her knee became very swollen. She saw the GP and was given anti-inflammatories and painkillers and asked to return if her condition deteriorated. Rebecca visited her GP several times and was given different medications which did not help. Eventually Rebecca was referred to a rheumatologist who diagnosed her as having mono-arthritis. Over the next year and a half the rheumatologist conducted lots of tests such as MRI scans, blood tests, cell counts and ultrasound scans. Rebecca was worried that she had the wrong diagnosis because the fluid in her knee was much darker than normal and contained blood. Rebecca also said that her knee was not responding to the methotrexate and sulfasalazine medication that her rheumatologist has prescribed. Keyhole surgery did not reveal any abnormalities or damage to the cartilage, ligament or bone. Rebecca asked to see a different rheumatologist. The new rheumatologist put Rebecca on both sulfasalazine and methotrexate at the same time. Rebecca explained that the sulfasalazine takes 6 months to work properly. At the time of the interview Rebecca had just started taking the medication and it was too soon to know whether or not it was working. Rebecca used to love dancing and skiing and has found it frustrating not being able to do such things for three years. She hopes to enjoy a more active lifestyle when her condition is better controlled.

Rebecca has been diagnosed with mono-arthritis (arthritis that only affects one of knees). She doesn't feel that symptoms match what she has read on the internet.

When I have my knee aspirated it’s very blood stained. And each time I’ve had it done they blood has got more and more defiant as it were, to the point where it’s basically blood but with a different density ‘cos there is a little bit of fluid there. Which makes me doubt it ‘cos if it’s arthritis from what I know anyway arthritis is a joint problem or something wrong with your joints. But my joint is fine; I know that from having the surgery. 

 

And then there’s all this blood, so to me I don’t know is, to me anyway it feels like there might be an underlying problem like a bleed or a vessel burst somewhere or something like that ‘cos they’ve given me all this medication over the last three years but none of it has really worked. And then the blood has got more and more defiant and the swelling is still there and it hasn’t really done anything so yeah. It feels to me anyway like there’s, it’s not arthritis because there isn’t anything wrong with my knee and there’s all this blood which can’t be explained. So it’s, I just find it a bit odd.

 

Where have you got the information from? When it comes to arthritis then?

 

The internet mainly. I sort of, when they first mentioned arthritis and they first started calling it this mono-arthritis, I was like, “Right okay,” but I didn’t, it was really weird ‘cos I did the typical I suppose young people thing is, when they were like “Oh arthritis,” I was like, “Well arthritis is what happens to old people. You know what I mean; this is what happens to you when you get older, not at 20.” I was like, I was like “No it can’t be arthritis. You only get it when you’re older.” And of course then it was like, “No you can get it at any age.” It was like, “Right, okay.” 

 

And I started looking, because they couldn’t name what kind of arthritis it was, and ‘cos I wasn’t still convinced that it was arthritis ‘cos I’d started looking on the internet and things like that and different side effects and different I don’t know signs and things like that for different types of arthritis, and to be fair some of it makes sense, but because there isn’t any damage to my joint it’s odd. Yeah. But I mainly got my information from the internet and I’ve asked, when I’ve been there I’ve asked questions and things like that. But yeah other than that it’s just sort of been named as arthritis, but it hasn’t really convinced me.

 

Rebecca had keyhole surgery on her knee. A doctor looked for damage to the bone and cartilage but did not find anything. She was upset because the doctor did not find anything and was insensitive when he told her. Physiotherapy helped after the operation.

Yeah it’s, oh I can’t remember what it was, what they call it. So basically they go in to see if there is anything in your knee basically that might be causing a problem. So they were looking for damage to the bone, to the cartilage I think they also did say that they were looking for broken vessels and things like that. So it’s mainly just because I think anyway it’s because they couldn’t pinpoint what it was that was wrong with me, the only other option left was to go in and see if they could find anything. Which they didn’t, which was a bit of a bummer.

 

Has that healed now or has that aggravated it?

 

No that’s, it’s healed. I had, oh I can’t remember when I had it done, it was last March I think, it was about a year ago, something like that I had it and it’s fine now and in a way it was, even though they didn’t find anything and I don’t know I wasn’t really happy with the surgeon as well, he really annoyed me. ‘Cos I’d just come round from being under and as high as a kite on morphine and whatever else they’d given me, and he came around and I’d literally just woken up, bearing in mind a minute ago I’d been talking about the fact that I’d dreamt I was in the Fanta advert, it was really odd but he came around and then said, he sort of was like, “I’m very sorry but we didn’t find anything and we don’t think it’ll have fixed it and your knee will just go back to the state it was.” And just walked off. 

 

And of course me in that state that I’d just had surgery, sort of in some cases they’d sort of said, “Oh if you know they might find it and they might fix it whilst they’re there.” So of course I’d gone into surgery, like, “Come on, this could be it, this could be it” sort of thing. Like not getting my hopes up really high but I still had hope that it was gonna do something, and then he just came round and was like, “No nothing, you know, it’ll just go back to the state it was in,” sort of thing, all of this, go back to your specialist. And just walked off. Especially as I was still drugged from the anaesthetic and things like that. And that was another point where I just cracked, it was like, just started crying ‘cos I don’t know. Again it was like you were a number, you were just surgery that they’d done nothing, it was like in and out, that was it. 

 

But yeah it was, oh as far as I know they did the surgery to try and find what was wrong, didn’t, and then it was only after that that I started to have physio. And that really helped ‘cos I, instead of limping they taught me to walk again sort of thing like properly on it, which has helped a lot because I had, do now have slightly more movement in it, from trying to keep my leg bending and walking properly, as I did when I was trying not to use my leg at all. But the physio stopped and the scars and stuff are basically non-existent now, so they’ve, yeah it’s healed fine. It’s just that it didn’t do anything. It’s still the way it was.

 

Rebecca had anaemia and got very tired if she forgot to take her iron tablets. She had even less energy if her knee was hurting.

Occasionally, but that can, I think that mainly happens to me because, especially if I’ve forgotten to take my iron supplements, because of my anaemia as well, it just all sort of gets on top of it. I do find that if I’m having a particularly bad, bad day with my knee, with walking about and things like that I do get a lot more tired really quickly because it feels like an effort to do anything or go anywhere because it hurts, which drains you. And then if I’ve also forgotten to take my iron it’s just I’d crash and then get home or whatever and manage to get home and that’s it, I don’t move for hours and just doze in and out.

 

But I don’t know, I still, over my friends and things that are the same age I can still keep up with them, it’s just if I’m having a bad knee day as it were, I would just be like one or two paces behind and then it’s probably that I don’t spend as much time out or whatever than I would normally. But it doesn’t really make much difference, it’s just my anaemia really that depends on it.

 

Rebecca liked to 'let loose' at the weekend and 'have fun'. She understood the risks of drinking with her medication but would 'rather not worry about it'.

I’m not the kind of person that’s like go out every weekend and get completely bladdered things like that, but if it’s a night out for a friend’s birthday or something like that I don’t want to be stood there at the bar trying to figure out what’s got what unit’s in it, and because of my medication what, what I can and can’t drink. 

 

It’s just, it’s just tedious especially on a night out where you’re meant to be enjoying yourself and every other part of my life is run by the knee , so I can’t do this, I can’t do that, I have to watch this, have to watch that. So it’s like on the night out I can’t, I just, it’s the one time I reckon I’m actually out to let loose and you know have fun, and I try as best as I can just to pretend that the knee isn’t there, just pretend it’s not there so I don’t want to be stood there trying to count different things and things like that. 

 

And I find it really annoying when everybody is really drunk around you, and you’re sober. And what I can’t, and it’s like normally I’m alright, but if I’m on a night out and I’ve paid to get into the clubs and things like that and then everybody around you is so drunk and just being ridiculous and then you’re sat there and just getting annoyed by all the stupid things that they come out with, and stuff like that. Especially when you’ve paid for the taxi, paid to get into the club and things like that. It’s just, it’s not worth it. It’s, I get the risks and I get why I shouldn’t drink and things like that. And I don’t drink most of the time, but on a night out I’m not, I’d rather not worry about it.

 

Rebecca planned her drinking around her methotrexate medication. She took her medication on a Sunday and didn't drink until the following Friday and Saturday.

Do you get ill if you drink because of the methotrexate? As in vomit?

 

No I don’t. Which at first ‘cos, see I know that it can make you really ill, but especially when you drink and with the methotrexate and I know that it can make you sick, so at first, when I first started to drink on it, I don’t drink a lot on it, but you know I drink a little bit and get a little bit tipsy or whatever, but I’m not one of these people that likes to get completely bladdered anyway. I don’t like being, it’s like the people that you see that can’t walk or just in such a mess they don’t know who they are, where they are, I don’t like being like that anyway, I’m one of these happy people so I like to get a little bit tipsy, and stay at that level and just dance. But no, I’ve never got sick off drinking and taking the methotrexate, which is good I suppose.

 

I take methotrexate once a week as a four tablet piece sort of once a week that dose, but I normally take it on a Sunday because we always have a Sunday dinner as a family, we’re always sat down at the table. And that’s, they say to take it with a big meal, so I was like that’s as big as it’s gonna get, so I always take it on a Sunday evening after I’ve had that meal. So really I suppose that is true ‘cos the only nights I’d ever go out is a Friday or a Saturday night, ‘cos I work for the rest of the time so those are the only times that I would ever go out and drink. So I don’t drink during the week, so I suppose that is true ‘cos I suppose that’s the time where its least in my system so I’m due to take the next dose on the Sunday.

 

But I don’t know, I’ve never had an effect from it, but admittedly I’ve never tried drinking on like a Monday night or something, after taking it. So I don’t know. Maybe.

 

Rebecca is happy with the support she gets from her employer. She has a footstool and chair to help the pain in her knee and can take time off when she needs to.

It’s not because they’re really good as well because I told them about my problem when I first started because of my desk and stuff, it was aggravating it a little bit because I didn’t have a foot stool or anything like that. So they did an assessment and have got me a stool and things like that that I could do. And the only thing with it is because of the methotrexate and because it weakens your immune system. I’ve been ill quite a lot, and unfortunately if I get a cold or a sore throat or something like that as soon as something’s got me, that’s it, it will floor me. The cold will turn into some serious virus or flu, so I’ll be off work. Or the sore throat, I’m really prone to tonsillitis, will turn into tonsillitis. 

 

So I do get ill quite a lot and they work on the whole Bradford factor, the thing which is they, it’s, I don’t really know how it works, it’s something to do with the day’s you’ve had off ill, over the periods of illnesses you have had in the twelve months, times by something else, which gives you the Bradford factor. And anybody that’s over 120 in that situation is then put on an action plan to try and help you and be like that sort of thing. Which is happening at the moment, and they’re sort of like, “What can we do to ensure this doesn’t happen?” Its like, “You can’t. It’s the methotrexate. It weakens my immune system so if I get something it’ll floor me.” 

 

And it’s like because it’s quite, so people who don’t know about the medication or the situation or whatever, especially with like, ‘cos I’ve only been in the role for the last 10 months or so. So it’s trying to explain, especially to like a manager or something like that exactly why this is happening and then of course they’re sort of like, “Right so it’s because of your knee?” It’s like, “Yes it’s the knee but it’s the medication for the knee that means I’m getting ill a lot.” And because obviously the knee is the underlying problem, but then it’s the medication that’s causing the illness and things like that. So it’s hard, especially ‘cos people who don’t know about this, so it’s hard to explain that your knee has led to this, which is quite difficult.

 

Mm.

 

But other than that work are really supportive with, like today they sort of said, “Look the guys coming in to do this study on arthritis, sort of thing and it’ll help people, possibly help me with stuff on the internet and things like that,” and they’re like, “Yeah do it.” So they are really good. And any appointments for anything I’ve got they’re happy with it’s just trying to explain why my knee is causing me to get ill so often and make that make sense is quite difficult. But other than that they’re really good.

 

Have you had any kind of aids for work? Kind of different chairs, different mouse pads or anything, kind of occupational therapy…

 

Yeah, I had a, I was given a different chair because it had a different lumbar support that I can move different bit’s. So I can move the bit in the bottom and the bit in the back and higher up the back and stuff like that. And I had a foot stool which you can change the height and sort of angle it’s at and things like that. Which is good ‘cos if it’s bad then, oh ‘cos there are different things sometimes it helps to have the knee bent and higher up or out straight or, I don’t know it’s weird. But no they’re really good and if I do need anything else th

Rebecca's boyfriend has been with her since she got arthritis. He supports her emotionally and makes sure she doesn't hurt herself physically.

So is he protective, can I use that word?

 

Yeah. Well, yeah he is quite but most of the time he’s not very protective of me, like he doesn’t do the whole like clingy boyfriend thing, it’s just, I think he things I’m a danger to myself, which is probably true in some ways I am a bit like that. So when I try, when I start doing something like, well I’ve got a Wii, so I’ll be doing the Wii fit or something, messing around with my sister, and he’ll come up and be like, “Stop it.” I’ll be like, “Leave me alone.” Like “Stop it.” Like “Right.” 

 

But I think it’s because he’s been there through every time that I’ve collapsed and it hurts so much when it goes, when it pops. And through the surgery, and things like that. He was there when I woke up, so he was there when the surgeon came along and I was in complete distress. 

 

And of course he’s one of the points of contact when I have one of these, when I have one of my breakdowns or I crack, he’s one of the people that I’ll be like, just go to and I think ‘cos, obviously it’s so much worse for the people that don’t know what, can’t really relate to it, because they don’t know about it. They’re there with you but they can’t go, “Oh I understand.” Because it’s not happening to them and he’s like that so he’s like, “I wanna make you better but I don’t know how.” And things like that. 

 

So I have these moments where it gets all too much and I break, but then I’m over it and I go back to normal. It’s like it’s all out now, so I start again. And I’m fine. It’s just it gets to a point where you have to let it out so but then go back to normal, but then that stays with him because he’s seen it and done it and stuff so he’ll say he’s not, he’s, I suppose he’s in the same boat as my parents really ‘cos he wants to help, he wants to make it better and change it but doesn’t have a way to and doesn’t know what to say to me to make it better. So it’s a bit like that really.

 

Rebecca isn't sure how she will cope being pregnant. She worries about the extra weight of pregnancy and has to plan in advance because she has to be off medication for at least a year.

What about thoughts about pregnancy, motherhood?

 

Someday.

 

Yeah.

 

Hopefully not right now. But no in few years, but I don’t know being pregnant does worry me, especially as one of my friends is due to have a baby and she is huge, she’s massive, bless her. She’s absolutely massive. And it does worry me ‘cos it, it bothers me with all the other things that I know goes on with pregnancy and stuff like that, so your back ache, your feet swell or whatever, I know about all of that. 

 

It worries me that I’m not going to be able to walk around and carry the weight as well, because of that knee, ‘cos my knee, the only thing with it is, is randomly it will pop, which is really odd. It will pop and I will collapse, and then it swells even more and hurts even more. And I can’t walk on it at all. It’s like when you sprain your ankle but me knee is basic, it feels like the top and the bottom have done that and gone in different directions. And that’s happened a couple of times, but again for no apparent reason. I could just be literally about to take a step as I normally would and it’ll just decide that it’s going to do it. 

 

And that worries me with the whole pregnancy thing ‘cos if I can’t, obviously with everything else, with, ‘cos literally obviously some people get out to about here, and the strain that puts on your body anyway, with the knee as well, yeah it is a worry ‘cos it also means as well that I’d have to come off the medication. So I wouldn’t have anything there trying to buffer it at all. 

 

And of course with the methotrexate and the sulfasalazine I’d have to leave it at least 15 months before getting pregnant. Which then means that if I ever plan, if I do ever decide to have kids that I’ve got to plan 2 years in advance for when I’m gonna have the baby. Which is, I hadn’t really thought of that before until then. 

 

But you know stuff like that, that and also if my knee went whilst I was heavily pregnant and I fell, which way am I gonna fall? And what’s that gonna do to me, to the baby? Well it’s just; yeah it’s a lot of hassle. I don’t want to think about it. No. I suppose that’s the only thing really.

 

If the treatment is not working try something different.

So it’s really frustrating. Especially when, with the first specialist because it wasn’t making any difference what they were doing with the different medications and then I got all the side effects with the Methotrexate and things like that. But it wasn’t making any difference to my knee, though I would have been fine to carry on with that like if they said, like you might lose your hair, but it will always grow back when you stop taking the methotrexate. But I didn’t care it was like if it works, I will go with it, I will not have hair. I don’t care if it gets rid of that. 

 

But I started getting all the side effects and it wasn’t helping. It made no difference to my knee whatsoever. And then I went back to her to them and she then decided to take me off that and put me back on the original medication, but I’d said that obviously it’s really frustrating that it’s not making a difference, and I don’t know if they were just a bit blasé about it, and it was sort of like a, “Oh right, okay well that’s not working. Let’s go back to plan And try that again.” 

 

And it was like yeah fair enough but what about me, what about the fact that I haven’t been able to do what I want to do for the last three years, and you haven’t made any progress with it. Which I think was my breaking point with the first specialist ‘cos I was like, “No, I’m not happy with this. You’re just treating me as bad really,” and it sounds bad but it was like ‘cos she sees people with the same problems every day it was like you were a number or a folder on the side. And it was all just a bit blasé and it was obviously, and ‘cos I’m so young so when you’re in the waiting room and everybody else there is 50, 60 years old and you’re there with the same problems, and then the doctor doesn’t understand and treats you the same, and just expects you to get on with it, it’s really frustrating and really hard to, it’s yeah.

 

PART B

Do you feel that now you’ve changed consultants that you’re taken more seriously?

 

Yes definitely. ‘Cos the specialist I’m seeing now also has, from what I’ve seen has another patient about my age. I’ve only ever seen one, ‘cos I was there at the same time sort of thing, but he could have more but I feel a lot more taken seriously in the things I say, they actually go, “Right okay, well if that happens do this. Make sure you’re eating a lot of oily fish. A lot of things like that and keep your iron up,” ‘cos I’m slightly anaemic as well, so like, “Keep your iron up ‘cos if your iron’s low then your blood cells are going to be low and that’ll affect the medication.” 

 

So they’re actually like you need to do this and this, and we’re gonna do this and this. If that doesn’t work you can look at instead of taking the methotrexate in a pill form, if I start to get the side effects again they were like well we can stop that and you could have it injected instead. Which should stop the side effects because you’re not digesting it. And things like that. 

 

And it’s like right obviously that sulfasalazine level didn’t work so we’ll up that, if that doesn’t work we’ll look at taking a different route with different medication and things like that. And also looking to put me on a physio course to try, even though I’ve got restricted use of my knee, to try and build up the muscle in it ‘cos that will help. So they’re a lot more informative and a lot more helpful as it were.