Making decisions about knee replacement as an older person with multiple conditions

Was it your GP that at first said, “It doesn't look like there’s anything wrong with the X-ray”?

Yeah. It was my actual GP, yeah. Yes, it was.

And did you have to ask them to kind of escalate it to push it further or were they sort of going to leave it at that point?

Yeah, yeah, I did, which is when I saw this other lady and she was the one that got everything done for me. She was the one that actually realised that the extra pain in the swelling, this knee is permanently swollen. This knee, the right knee, before I had that one done used to swell after exercise or being on it all day and then overnight, the swelling would go down, the pain would go down. This knee, no. It’s continuously, permanently swollen. It’s in a right state. The whole leg is, actually. And that scope physio then, she was the one that got me on that colchicine tablet and said, I think it’s pseudo gout. It’s in there with the arthritis and so she suggested to the doctor to put me on this other tablet. So, she’s done as much for me as my doctor’s done, to be honest. She was absolutely amazing.

So, it sounds like the sort of pseudo gout and the knee problem were sort of affecting each other then? Sort of making each other—yeah.

Yes, yes and that was why, that’s why the, you know, the swelling is there permanently. It never goes down, not even at night, resting or anything. It doesn't go down.

You know, and everybody says, “Oh my, why’s that leg so much bigger than the other one?” It’s all to do with me arthritis, so. You just learn to live with it, love.

That was that wonderful- that was a physio lady that got that done for me, the doctors didn’t—it was the physio lady that got it done for me. The one that suggested that I had the - when my swelling wouldn't go down, and she suggested that it was pseudogout.

So, I went back to the doctor and said that the physio had suggested it was pseudogout, and to put me on these tablets, so the doctor did and the swelling went, it was amazing.  This special physio, they called her a scope physio or something like that? I haven't heard of it—

Extended scope- extended scope?

Yes. Yeah. I hadn’t heard of it before.

That’s what she was and she was at [city name]. She was the one that got me the MRI. She was the one that got me the swelling down, because she was the one that thought it was the pseudogout. She was the one that got me the exercises before.

So, I’d love to find her again, but I never will, but I’m sure she would get me some exercises to do. She was brilliant.

Yes, something called varicose eczema which means that my legs tingle all the time. I don’t know if you know anything about it, but it drives you potty, to be honest. Worse at night, but it’s there all the time, which of course, then makes the other problems that you have with the knee - sort of exacerbates, really.

And you mentioned that the eczema in particular can exacerbate problems with your knees, or sort of impact on the other health conditions. Do you mind saying a bit more about that, please?

Yes, it’s varicose eczema, which I’d never even heard of. To me eczema is a sort of skitch- an itchy skin complaint. But this is quite the same. I do have varicose veins. And I’m told it’s like having leaky veins.

I sort of have read up on it, but [laughs] it can make funny shape to your legs as well. It’s not too bad at the moment. But they do say something like upside down champagne bottles [laughs] which is a little bit weird.

But yes, just can’t even think how many years I’ve had that now. That’s a lot more recent, a lot more recent. And yes, it’s just a constant itch. It’s not a question of itching because if it’s itch you want to scratch. But this doesn't actually feel quite like that. It is tingling the whole time, which is like an itch, I suppose.

I don’t think they particularly interact, It’s just that because you’re constantly having this feeling in the legs, you know. It’s, it’s just means that it intensifies everything. If you like.

I’m aware of my legs. I’m aware of my knees [laughs] you know? In fact, I mean, the knees do vary a bit. Some days, it’s worse than others some days I’m having more problems from the hip - the hip that was done - but that’s more to do with when I lie on it in a particular way. One day it’s absolutely fine, another day it’s not.

But I, I think it must depend very much on what I’ve been doing. How I’ve been using my legs, and you know, I play bowls. It’s something I took up when I had to stop playing badminton because of sort of high impact. You know, it was only social badminton. It was still too much for my knees.

And it’s difficult, some days I’m very aware of my knees, sometimes I feel that they’re huge, they're probably not half as huge as I feel- that they feel that way, but sometimes they do feel very large. But as I said before, I have this varicose eczema which also has an impact on my legs, so it’s difficult sometimes to separate the discomfort of one and the other.

However, at night sometimes I’m lying in bed and I’m aware of a pain going up into my left buttock, or a pain in my knees, which always seems peculiar, but I know it’s what happened before I had previous ops.

It seems odd that when you're lying still, and you're not moving around, that that pain is there. But I believe that’s quite normal.

One of the biggest problems I’ve got is because of the amount of surgery [sigh] I’ve had - over the last three years- four years, I’ve got no core strength anymore.

So, at the moment, trying to get out of a chair not only hurts the leg itself from the hip down to the knee, it also creates cramp in my stomach because I’ve got no strength in the stomach—and so I get cramp in the muscles that have- either they’re very weak—very weak or they’ve got scar tissue because of the amount [of surgery] I’ve had done.

Yes. I don’t, I don’t look like I’m walking in a straight line [laughs]. And sometimes I feel like I’m going to lose my balance too, not because of my head but because of the way my feet are moving.

My doctor just looks at me and just shakes his head and says, “Well,” he said, “it’s just your arthritis.” And of course I have fibromyalgia and that plays up because then it makes me tired, and it takes me twice as long to do anything as anybody else. So, it gets depressing.

And, you know, I think of the things I should be doing, I could be doing, but I don’t, I don’t get to do them, I don’t get to do them but, you know, there you go.

The fibromyalgia is knocking me for six; it makes me so tired. So tired.

Would you mind sort of—

And sometimes my muscles really hurt—and that’s not the joint, but the- the muscles around them, I can feel it.

Well, I can’t walk very far, simple as that. ‘Cos it’s not only the knee that aches, it is my spine, my spine sort of, you know gives up and I’ve got a lot of pain. I can’t walk without a walking stick. I’ve got to have a walking stick as an aid.

My knee or my leg at the moment is bent, just like a banana.

Oh gosh.

My knee's gone outwards and I’m walking on the side of my foot.

Gosh. Must be very painful.

It is. It is. It makes your ankle ache as well, sort of thing, you know.

And I’ve noticed all my shoes are wearing on the outside [laughs].

Oh, sort of from the way that you’re having to walk? Yes.

Yeah, yeah, yeah. ‘Cos it makes you, makes your foot turn in as well.

The knee is perhaps the main one, but that’s sending up to the hip and then it’s making me walk funny and that’s pulling the spine I think as well.

‘Cos if I, if I go in the garden and I usually go in in the morning and do like a couple of hours work, it’s really painful right up through.

Regarding how I feel, I think probably that in itself makes me feel pretty grotty, obviously it’s very, very difficult to sleep as well. I, also find that I’m generally having to go and pee generally a lot during the day under normal circumstances, like okay now it’s, I haven’t had this treatment since December 7^th but I did have a camera treatment yesterday which has made me pee more than normal.

Together with my knee, I find it very difficult to sleep because I have to get up during the night eight times plus, I would say, and of course then when I go, try and go back to sleep I’ve then got to try and settle my knee in a particular position, and then when I’m comfortable with my knee I drop off. Of course, then of course I want to go and have a pee again.

So, I’m finding that my knee is not helping me sleep by any stretch of the imagination.

So, I’m not sleeping at all well at the moment because of that, but again all right it’s just one of those things which I’ve just got to, got to accept.

But at night I can’t tell if it’s the hip or the knee or, or, or my mattress. I spent £1,300 on a new mattress and it didn’t make any difference, in fact, I think it was worse [laughs] and of course, again in the middle of the night when I’m tossing and turning and I cannot sleep and it hurts and sometimes it’s spasms from the spinal area around my waist right down to my foot.

How much of that is to do with the arthritis and how much that’s to do with just tension? ‘Cause I can’t get to sleep and I’m getting so anxious [laughs] who knows? Nobody’s ever talked to me about it.

Yeah, that's one of my questions - whether any of the conditions or the different parts of your body affect one another? Whether that’s making it worse or the treatments affect the conditions at all?

Well, yes, obviously. Keeping me awake affects my general abilities. And you know, I’m an anxious person. And I’m not an anxious person in the daytime at all. But the minute I go to bed I start thinking about things and worrying about things. So, so, yes, it affects, it provokes anxiety.

I think I might put a little more stress on the difficulty of sleeping. And whether or not, you know, again, if it was more holistic, somebody would say, “Oh well, there’s this or this we can try about sleep deprivation” [laughs]. You know, maybe if I could sleep better, I wouldn’t have such trouble with my joints? I don't know.

I really would just like to be able to get on with my life without my knees being such a problem.

I’d like the pain removed by whatever means they can find. So that I can walk more, and I’m very, very active you know, within the limitations of what I can do, knee-wise and that. I’d just like the pain removed, in short terms.

Whatever that takes.

I’ve been in pain with arthritis and I’ve accepted that for 30 years I guess, and when something like the knees cause problems - which is some considerable time now - it’s pain on pain and people can stick all kinds of pain really but it’s just, I think it wears you down really.

And I simply wish that it could be fixed fairly soon.

Because you accept it, you live with it but it does change the way you are.

And the pain is like that - on top of the general pain I get from the arthritis osteoarthritis these knee pains, the knee pains are fixable, the arthritis isn’t. And so, because they’re fixable it would be a tremendous help if I could get them fixed, you know?

Well, I suppose the top one at the moment is the prostate. I hope that settles down [laugh], that’s-. I suppose the thing about, the one that I have in my mind is my back, my spine because the consultant there said to me, he’s very, very reluctant to do anything with my back. Because I was able to manage with the pain, they didn’t want to do anything, ‘cos he said the risks are too high. He said, “If you’re in actually excruciating pain-,” then they would do something. And he said, “Even in your case, I don’t think injection into your back would be any good.” So, he said, you know, “Just leave it as you’re managing it” he said. “But if it does flare up or get any worse then-,” I’d go through the GP and he would see me again. So, I suppose the spine is the major one, the pain sort of thing.

But, you know, [laughs] you know, you know, I’m 80 in a month or so’s time and I think ‘god, you know, 70 to 80 is bad, I wonder what 80 to 90 is gonna be’. But okay, you know, that’s life, that’s the way it is. I can’t afford to do anything private to get it done quicker. But no, we are where we are. And I just get on and deal with it. I try as best I can. As I said to you just now, you know, the old man is getting in I’m afraid, desperately trying not to.

I think my major doubts and my hopes are about how joined up things are going to be. How do they know what I’ve done before and so on and so forth. Who are they going to tell and so on?

You see, I should explain my impatience with the system is, ‘cause I have lived abroad for a long time where [sighs] the normal GP consultation is half an hour, not ten minutes. And where you can see a consultant any time. And where you keep your records. So, you know what the hell’s going on.

And coming back to England ten years ago, I found it really quite distressing that there wasn’t. Well, things like, my then GP absolutely refused to take anything that I gave her from Belgium [laughs] which was ridiculous. You know, I had x-rays and reports and things that could’ve been relevant, but she didn’t wanna know.

For instance, I lived in London when we first came back and I did have a scan on my spine for back problems at that point. Now whether or not anybody knows that now, I haven’t a clue because I have my doubts about the administrative liaison [laughs] between different NHS Trusts.

Could you reflect a bit on what’s the impact of having, as you say, shorter consultations and longer waits to to see people?

Oh, the impact is that, you know, the poor GP - and I have many friends who’re in the medical profession and I do sympathise - they, they can only talk about one thing at once. And you know, you’re not going to book [sigh] day after day after day different consultations, so they never get the full picture.