Interview 11

Age at interview: 52

Age at diagnosis: 28

Brief Outline:

RA diagnosed after months of knee and elbow pain and reduced mobility. Many joint injections. Took steroids & Penacillamine for 10 years but chose to stop. Now Co-odamol 4/day and blood pressure drugs. 2 Carpal tunnel operations & wrist bone removal.

Background:

Administrator, married with 2 adult children.

Felt a fraud with no visible symptoms but went into hospital for rest then finally asked what was...

So he then said, 'I think I'll send you to a, a rheumatologist'. So I saw the lovely consultant at the local hospital and felt a complete fraud because you can't see anything. So I thought 'Well what am I doing here, I can't show him a cut finger' and I was there for about two hours and I said, 'I just feel a complete fraud here'.  

So he said, 'My dear, you are not a fraud and I want you in hospital within a week'. The nurses went on strike that particular year so it was actually 12 weeks before I got in to the local hospital and I was there for about 3 weeks, and complete bed rest. I wasn't allowed to do anything for myself. I did insist on going to the toilet [laugh] 'cos I thought I'm not using those horrible bedpans. So they allowed me, I think it was a maximum of three visits to the bathroom a day, but I couldn't do anything else for myself at all.  

Yes I was, yes and it took quite a long time to actually ask what it was that was wrong as I know that the specialist said, 'Oh I wondered when you'd get round to asking me exactly what it was you'd got'. You know, I just sort of sat there and I think it was in hospital that I finally asked him, 'Well, what is it then, that's wrong?'  

So not at your first consultation?

No, no, I guess I just tried to ignore it. Again you couldn't see it, so therefore as far as I was concerned, there wasn't really anything wrong, just a few aches and pains and the fact that I couldn't pick a cup of tea up anymore.

After about 8 years of taking steroids and penicillamine she decided to stop and slowly did so...

I've had quite a lot of pills but again I got fed up of taking those, so I went to my doctor and said 'I don't want to take these anymore, I want to self manage and I want do it how I want to do it and if I want painkillers, I'll take them and I'll buy them over the counter'. And that's basically what I've tried to do.

And I was on Penicillamine for a very long time and steroids which made you go [demonstrates bloated face] which I hated, absolutely hated but I was on those for quite a long time and again one day, I thought, 'I'm not doing this anymore'. So they agreed I could come off of them. 

Did it take you a while to sort of [stop taking the steroids?]

It did. Yes. I think it must have taken about a year, I think to actually come off of them completely and that was about 4 or 5 years ago now.

Did you know a big difference as you were reducing them?

I did to start with and then as the, the time went on and no, it was, it was all right. 

And was that like more pain?

There is more pain as you, yes, yeah, more pain. But I just take some painkillers for that which I'd rather do because I used to find that I was in a fugg the whole time, when I was taking the pills. I just could not make a decision, as if there's a blanket wrapped round your brain and you had to fight to get anything out of it. And now it's much better, much better without them. 

And likewise with the Pen, Penicillamine?

Penicillamine. Yes, we came off of that slowly as well 'cos that apparently could have been quite a dangerous drug. I used to go every six weeks for a blood test and a water test to make sure that everything was all right and it wasn't killing off the things that it could kill off. But at the time it worked so therefore you are grateful for taking it but after a while these things just, you get immune to them so you think, why should I, you know, carry on taking these? It's not actually doing any good to me.

Had two carpal tunnel operations and a wrist bone removed to reduce tingling and pain and...

I've had the carpal tunnels done and that must have been about, it was a long time ago, about 15 or 20 years ago. And about 10 years ago, the wrist bone removed 'cos it was too early to replace it, with any artificial joint, so they just took out. So.

So has that hampered the movement of it?

It has done, yes, yeah, there're certain things that I can't do, that I used to be able to do like play the piano and things like that because of the moving, it doesn't move so fast up and down the keyboard. But never mind [laugh]. I learned to play the guitar instead [laugh] so that's left handed so that's OK. 

And  the carpal tunnel, what, what sort of symptoms did you get in order to realise that there was something maybe doing that?

Again that was quite a lot of pain and sort of tingling in the fingers and the ends of the fingers, although they were dead but I mean, they still are, so that's one's party piece carrying around a cup of coffee, because it doesn't burn you see [laugh]. Stick pins in the end of your, needles. So that was it basically and the fact I really, they weren't sort of bending and doing things that they should do. So they did that. 

And what, you're still tingling at the ends but '?

Well they're, they're sort of dead at the end now so as I say I could stick a pin in it and I wouldn't feel it.

So what was benefit was the operation?

It took away the pain that was in sort this part of the hands and made the fingers more flexible but yeah. 

And that's all the surgery you've had?

That and just having the, the wrist bone removed, yes, that's the only surgery.

Was that more pain?

That was incredibly painful, the wrist, yes and very stiff. It wouldn't do what I wanted it to do so I said, 'Right get rid of it'. So, that's been OK.