Interview 05

Age at interview: 51

Age at diagnosis: 27

Brief Outline:

RA diagnosed as significant symptoms after birth of 2nd child. Complementary treatments used. Takes Diclofenac 15mg & 2 Coproxamol daily. 10 operations' hips, knees & shoulder replacement/revision; neck, ankle & toe fusions, and removal of bone in 1 elbow.

Background:

Teacher, retired on health grounds, married with 2 adult children.

Was devastated when RA was diagnosed at the age of 27 and thought she would end up in a wheelchair.

Absolutely devastated, shocked and very upset because as I said I didn't realise, I didn't really think about arthritis at all before that and I thought that it was something that came on gradually with old age, and I was told by the, not by the registrar at the hospital, but by the consultant that I saw next, that it was incurable, although there were measures, lots of things that they could do, operations and drugs that they could do to help but that there wasn't a cure, which was difficult to, very difficult to cope with at 27.

Did you know much about rheumatoid arthritis?

Nothing at all apart from a memory of my childhood when, and I think this is partly what upset me at the time, I had to go to the hospital for something routine with my mother, and while we were waiting, another lady was pushing a wheelchair with a young woman, who was very obviously very seriously crippled, and I said to my mother, 'What, what is it that she has?' and she told me it was rheumatoid arthritis. And I think this image stayed in my mind and that was why it was quite a shock to be told I had the same thing.

Having private treatment she could choose surgeons who were skilled with a particular joint.

I think I tried to find out as much as I could about the treatments, the drugs, the operations and to ask as many questions as I could I, certainly with the operations I tried to be recommended to surgeons who had a particular skill in that particular area that I needed operating on. And saw some surgeons who I didn't, I didn't end up having an operation from but it still seemed to help to, to go to see them. They would recommend me on to someone else so I probably felt that I did as well as I could do.

She tries to take the smallest dose of anti-inflammatories for fear of side effects although she hasn't experienced any.

So therefore I just stay on the basic anti-inflammatories with painkillers occasionally as well.

So how do you feel about taking those long term?

I'm just sort of resigned to it I suppose. I don't have as yet any side effects from the one that I take. So I'm just OK really taking, it doesn't, it doesn't have a massive amount of effect, it doesn't seem to have a massive amount of effect, taking it but if I leave it, if I don't take it I can, I can certainly tell so it probably has more effect than I think. I try to take the minimum I can get away with really because of the warnings they've given me about stomach damage from the anti-inflammatories. So, although I'm sort of prescribed the full dose of it I take a little less unless I have, I'm having a bad day and then I, I know that I can bump it up a little bit, take a bit more.

Which one is it?

It's the di, Diclofenac. Yeah.

No I don't have any side effects from that tablet no, I think that you can get indigestion. I think is, is an indication that it might be affecting the lining of your stomach but I've taken them for about 15 years now without, without them having any affect as yet on me.
 

Experienced side effects of sickness and headaches from anti-inflammatory drug - Indocid.

Yes early on the consultant who put me on the Gold injections also prescribed Indocid and I did find that difficult to take it, it was all right as long as I'm, I remember to eat enough but if I occasionally didn't have a lot to eat and, and took the tablet it made me very, very sick and headachy and I think really I wish had, had not taken that particular drug for, for as long as I did because I coped with that several times, that, that reaction and I think I should have been more sensible and reported that and had, had a change to that drug earlier than I did.  

Has had injections into various joints with varying effects.

I found them fairly helpful. I had them in my knees, several in my knees and they had quite a lot of effect immediately. They would give me the injection and remove some of the excess fluid in my knees and so immediately afterwards it was a lot, lot better and that effect would last, in, in the early years that effect could last for about a year, but after repeated injections I think the effect becomes less. They did try injecting my hips under anaesthetic but that didn't have so much effect. They injected my wrist as well which helped. Yes, it, it did, it had quite a, quite an effect the injections and lasted for a reasonable time. Yeah.

Are the injections themselves painful?

I think a lot of people find them painful. I, I didn't find them particularly bad. Just, just as bad as, as having an injection. I know some people find them quite awful. No, I mean they're not pleasant but I didn't, I didn't find them particularly bad at all.

Physiotherapy and hydrotherapy did not give much improvement in her already damaged joints.

After each operation you have physio. I have had various periods of time where I've had more intensive physiotherapy like hydrotherapy but it hasn't, it hasn't helped an awful lot. Each time, not, not recently but in the earlier years when I was referred to the hospital for physiotherapy or hydrotherapy, each time I would arrive and the therapist would say, 'Ah yes, we can, I'm sure we can get these joints better than this and get more movement than this'. And be very positive about it and I would go through the weeks of treatment and they, they really, they couldn't really get an enormous amount of improvement. I don' t think any of the physiotherapy actually increased the range of movement that I had with the damaged joints.

And although the hydrotherapy was, was nice and relaxing and helped a little bit because the water was very warm and it was nice to exercise in, in warm water I don't think it helped an enormous amount.  

I think possibly in the early stages of my neck problem physiotherapy and hydrotherapy helped a little bit. Yes, I think in the early, earlier years of having neck pain the physiotherapy certainly helped with that. But the hips and the knees, and the elbow, I think not, I don't think I gained anything really from it.

Thinks that some physiotherapists don't understand how much pain some of their exercises can cause.

I've often found in hospital that I have to keep telling them the way to do things and the way not to do things. To, to avoid hurting me and things like that. Though generally speaking that, I mean, nurses are very, sort of caring and helpful and physiotherapists vary I think. 

Some are a little aggressive in their attitude to exercise. I think sometimes they don't tailor the treatment to the person's requirements or, or realise quite how much pain you're in.

I think some physiotherapists get a little carried away and think that you can do the impossible with some joints that are really seriously damaged or, so you, you have to be a bit careful I think there.

The orthotist has provided made to measure shoes and also insoles for her slip-on shoes.

Yes, I have, I have seen the orthotics department. And I have an appointment coming up to see them again. The first time I saw them it was because I find it difficult to find shoes that fit. And a particular problem with, with slip on shoes that I can wear around the house because I can't reach to do up shoes so I have to find something that's both comfortable but, but slip on as well.

The first time I went they, they took a plaster cast of my lower leg and foot, took all sorts of measurements and said they would make me a pair of shoes, outdoor shoes, which they did but they were a bit disappointing because I went back for a fitting and they were, they didn't fit very well. They were tight and, and they were too short and they changed them again and I went back and they, they seemed a bit better but they didn't seem that comfortable.

I brought them away with me but I haven't really worn them because they're not actually, they're not actually that good a fit  which was a bit of a disappointment as they actually had a plaster cast of my feet to make them round. I, I can't really understand that.

I've been back since then with the problem of, of shoes in, in the house because my right foot doesn't fit very well onto, onto shoes and my heel tends to come off the back of the, the slip on shoes and not actually fit properly onto it. And to begin with the lady that I spoke to said they couldn't help me at all with that, that they only, they only make proper lace up or velcroed up shoes, supporting shoes that they couldn't give me any help with slip on shoes because the, you know they're not considered proper footwear. 

And so I persisted and tried to explain that I'm actually stuck with slip on shoes that I can't actually get up in the middle of the night for instance and put on a pair of lace up or velcroed shoes to go to the bathroom and I persisted long enough for her to call her superior in, the head of the department in and he took one look at my slip on shoes and said 'Yes that's no problem. We can cut them here, we can do this and we can get them to fit and they'll be ready in two weeks' time'. So my, my persistence paid off .

Anyway, I've got to go back and see them again about the same subject, something to wear around the house. Also I have a lot of pain under my feet because of the changes to the bones. There's pressure on, on the soles of my feet. So I have a chiropodist come to help with that but it's quite a problem so the rheumatologist last time I saw him suggested that the orthotics department might be able to come up with an insole that could go in a, in my shoes to ease the pressure off. And he made sure that he put in the letter that it was to go on, in a, in a slip on shoe not, not in a proper lace up shoe. So, [laughs].

Was very glad to have moved from a private room to an NHS ward after her hip operation.

A lot of the other operations, being as I had them privately, I was in a room on my own so I didn't have that. I didn't have that support and help until the, until the replacement of the replacement hip that I had 3 years ago. That I had the operation in a private capacity but I was then moved into the national health ward because the rheumatologist considered that the national health ward was much more able and experienced in dealing with rheumatoid arthritis and he thought it would benefit me if I was cared for there in the days after the operation and he was right.

It was, it was better in a lot of ways to be in that ward. You don't have the, you don't have the privacy of your own bathroom which after a major operation is, is a help. It is a help to have that but on the other side the nurses were more experienced. I had more help. They were, they were much more used to people with my condition and how to deal with it and I had other people around, not with the same form of arthritis, but with various other things, and that helps, it helps to have company. You have the support of other people. So and you're not so cut off when you're in a national health ward, you know, you're feel that you're not isolated in your little room. Yeah.

So bearing in mind that you may have to have, you know, further replacements, 

Yes, yes.

'what would you say the advantages and disadvantages, which would you choose?

I think provided I can be sure that the surgeon is a surgeon of my choice, I think that's the very most important thing to me. bearing in mind that revision operations are less straightforward than the first replacement operation is. I think it's really important to have a surgeon that you can feel confident, that can make a good job of it. So provided that it's a surgeon that's been recommended and that I have faith in I think I'd be entirely happy to have the operation under the National Health. 

Describes her neck problems, how the thought of a neck operation was frightening but that it was very successful.

And I could manage for a, for a short while to do things but then I had, would have to lie down or sit down. And it was very, very difficult to cope with. The, the rheumatologist x-rayed my neck and said it was in a pretty bad state. And gave me a collar to wear shortly after that. Sort of soft supporting collar which actually had a, an enormous amount of benefit for my neck. It was amazing what putting a little soft collar round my neck did. It, it meant that I could function OK without that pain that I was in before.

I could carry on doing things and  it helped a lot but they felt that it was very risky to carry on with it in that condition. He warned me that if I fell over, if I was outside the house or if I was in a car accident or anything that I could become paralysed or, or I might die from it. So they recommended an operation to fuse it.

Which, which was probably the most difficult operation to face. It was, it was a little frightening because the, the surgeon who did it who was very, a very good surgeon and a very nice man began the consultation by saying 'of course this operation carries a risk of paralysis of your arms and legs' which after he'd said that I couldn't really concentrate on anything else that he was saying.

I don't think that he really meant to frighten me like that. I think he, I think they're just required to tell you the risks each time. But I went away feeling that I, I couldn't live without the operation but that I couldn't go in and have it either. That was very, very difficult. 

I don't think the surgeon said very much at all about how I would feel afterwards. And I was quite all right in hospital because I was lying down flat on my back most of the time and so the full effect of what they had done wasn't apparent until I came home. And my head to begin with, because of the radical nature of that operation, felt entirely unusual to me. I had, hadn't any feeling in the back of my head at all. It was completely numb so I felt as if I didn't have a back to my head.

It wasn't painful at all, it was just very, very disconcerting and I thought perhaps that I was going to be like that for the rest of my life, which was a great worry to me. so I had to go back and ask the, the doctor because the surgeon had then gone on holiday, who said that probably the feeling would come back properly and after about 2 months the feeling began to come back and it, it's now not, not exactly as it was before, it's slightly different but it's, it's nothing, nothing difficult at all. Yet the actual operation was really very, very successful and has completely, completely solved that problem and it's also permanent. And  it would have been good if somebody had, had warned me that your, your whole head and neck feel, feel very, very different and that it's only temporary.
 

Would have liked the surgeon to tell her how her ankle would feel after the plaster was removed.

Only that I think it's a good idea for, for people if they have to go in for an operation to press the surgeon to give them a fairly full picture of how they'll feel not, not just immediately after the operation but in the few weeks following the operation when they're home again. I had a couple of operations where I would have found it useful to have been given more information so that I didn't worry about the way I felt initially. 

I've already mentioned the ankle and the fact that immediately after the operation I could walk really well in a plas, plaster cast but when the cast came off my foot, my whole foot felt very, very different from normal and it was a great struggle to walk initially but it didn't last for that long and I think it would have been a good idea if I'd been warned that it was only a temporary effect and it would actually feel quite normal after a few weeks. 

Adapting the base of the shower and having taps that were easy to turn helped.

Yes, I can cope fairly well around the home, I think, we've lived here for 3 years and we've redone most of the rooms and  we put in a whole new shower room, for instance, so that I could have a level access shower. That was a big problem, I, I can't get in and out of the bath and a shower's OK but the sill and the  base of the shower are, a difficult, a normal shower, it's difficult to, to actually step in. In the last house, it became very difficult to get over, actually into the shower because of the height of the base of the shower tray.

So we had the shower here taken out and a completely level access one put in. And a nice shower that's easy for me to turn on and off, that's the other thing. There's a lot of showers, particularly with the plastic controls that are difficult to actually to, to turn, and a door that will open easily and taps that are easy to turn and things like that. So, so all that side of things is, is nice and easy for me. 

She tried many complementary and alternative therapies without success but wonders if she should have started sooner.

I think after the first few years of trying those treatments and not having a great deal of success with gold either, we, we moved to another area and next consultant changed, wanted to change the gold on to another strong anti, anti rheumatic treatment. I think it was then I started looking at alternative therapies.

Everything under the sun, diets, acupuncture, you name it I tried it and to begin with, I thought I was having a, a measure of success. I believed in, believed in the alternative therapy wholeheartedly, I really thought if I progressed with it and stuck with it and did it properly that I would actually be able to get on top of the disease. I did that for several years. 

Some of the, some of the alternative therapies, required that I stop all allopathic treatment, all drug treatment, so for about 18 months, I was not on any anti-inflammatories or painkillers. With some of the treatments I could carry on with the drugs. At the end of the day I, it didn't stop the destruction of the disease. I have it fairly aggressively and it's sort of worked its way through my joints and did an enormous amount of damage. 

So then went on to joint replacement. Still trying to stay with a healthy lifestyle and a good diet, and still trying things that were suggested to me. 

I think, I think if I'd just been diagnosed now I would have launched myself into all the alternative things, right at the very beginning, just in case. You do hear of people finding things that work. Different things work for different people. And I think, bearing in mind that the drug therapy can't cure you and it can have some bad side effects that you, you can't lose anything by, by trying these things. 

And, and some of them have health benefits, most of the diets are, are fairly healthy for you. I think probably if you can, if you can have the self-discipline to, to give them a really good go I'm sure some people do benefit. I often ask myself whether I, I tried hard enough or whether I should have tried sooner, whether I would have had more success.
 

Adaptations made to a car enabled her to drive although after her arms became too painful she had to give up.

Yes. The first car that I had, normal car, was automatic and it was, it was a Triumph. So the seat was fairly high which solved my problem seat-wise. So that was OK for several years.  

Then with the destruction of my arm joints, I found it difficult to steer. It was the steering that became difficult. Eventually I, I couldn't steer it well enough to be safe driving it, so I had to sell it. I went down to the TRRL [Transport and Road Research Laboratory], the motor place in, I can't remember where it is. 

But they test out cars and do all sorts of research and they were incredibly helpful. They, they tested my strength in my arms and they let me try out various cars with different steering and they recommended to buy another car and have the steering  brought down as light as is possible to have the steering on a car so that I could cope with it. There were a few, sort of minor changes, like altering the hand brake so that you didn't have to sort of pull on it, quite so hard to release it and altering the device that you have to pull in order to move the seat forward and back and putting a strap on the door so that I could reach it to close it once I got in. 

And a very wide mirror because my, I couldn't turn my head very well at all and that gave me good enough vision around to, to drive safely. So that was marvellous to begin with. The car was very easy to drive with the, with the steering being so light that was the, the advantage of having the car adapted.   

But with the increasing problems with my knees and arms, I found that even the steering became difficult. It was easy enough to turn the wheel, but the movement on my arms was very painful and I ended up having to sit very close to the wheel with my arm completely bent, my left arm complete bent, so that I could turn the wheel without pain and  that didn't seem a very good way to be driving. 

Also I could still at that stage get off an ordinary dining chair, and the car seat without assistance but when I had my knee operation, I lost that ability so I couldn't actually cope with getting in and out of the car, either. So I had to give up on that one, then.
 

She tried an 'exclusion' diet, which involved lots of raw fresh food, but the pain persisted.

I thought in the early stages that I might be benefiting from it. It, it was fairly difficult because you had to begin on an exclusion diet with I had to live on grapes for two weeks. I had to come off all the tablets. He [the doctor] said it wouldn't work if I took drugs at the same time, and you had to live on grapes for two weeks to, I think, to clear out your system and start from scratch. And he said in the early stages, he thought that I was benefiting from it and I believed that it was a matter of time if I stuck at it long enough, the diet and everything that I would actually begin to improve and the pain would go down dramatically. I did it for over a year. 

And I think I got to the stage where I realised that the pain wasn't, wasn't going and that it was still, still very difficult to cope with and he started to mention things like that, for instance I could have a hip replacement. I suppose my hips were the worst thing then and so I realised then that it wasn't going to fulfil all my expectations of a cure. 

His diet involved a lot of raw fresh food. At the beginning the whole diet was raw food. After a couple of months, I was allowed to have a cooked meal in the evening. It excluded wheat and dairy products, cow's dairy products, you could have goat's milk. Also excluded meat, all red meat, you could have chicken and fish. That was basically his diet. 

Her parents helped her with the housework, shopping and childcare.

In the early stages. I think probably the, the biggest problem in the early stages was tiredness. I think it made me very tired, and it's quite painful, it's quite a painful condition. But, but I think I, I coped reasonably well with it. I had a lot of help. We lived near my parents at the time. My mother used to help me a lot with the, the house-work and my father helped me with shopping and various things with the children. So that meant that really we could live a fairly normal life.

Her main problem will be maintaining her artificial joints.

So, in the future do you think it, what do you think the problems will be?

I think the major problem now will be maintaining the artificial joints. I, I think that's going to be the main thing. It's like the hip that had to come out and be re-done. It's, it's a question of  it, having to have the artificial joint, I mean my hips and knees in particular, to, to make sure that, that, that they're functioning still and to, to pick the right time to have them re-done. I mean the right hip is showing signs of, of failing and the right knee but, the right hip actually feels perfectly normal to me, has no pain whatsoever and I can walk on it normally. 

So, I regularly have it monitored at the hospital and x-rayed and the decision there between myself and the surgeon is that if it carries on feeling OK and doesn't change on the x-rays I can carry on indefinitely like that but if there's any sign, major sign to me that anything's getting worse or if the x-ray shows more damage then I have to go in immediately because otherwise it makes the surgeon's job that much more difficult and my chances of a, a good operation to re-do it are reduced if I don't take a sensible attitude to the operations.

Her flare ups often come on over night, are very painful, restrict mobility and she has to rest.

Yes. I don't understand why I have them now having been told for the past about twelve years that the condition has burnt itself out. I, I would have thought I wouldn't have flare ups but I asked the rheumatologist about that and he said that it is, you, you would still have this happening and that you feel as if you've got the flu but you haven't got the flu. There, I find them now very difficult with. I don't have them that often, perhaps twice a year, perhaps three times a year and it almost always seems to happen in the night, sometimes it'll, it'll begin to come on in the evening and I know that it's coming on. But usually it's in the middle of the night. And everything seems to seize up.

My muscles seem to become very painful and it's very difficult to move at all. My joints become painful, particularly my knees which is odd because most of my knees are now metal and plastic but the pain seems to concentrate around my knees. And  I tend to go a bit hot and cold and  it, it's very, very difficult to move. So I find if I need to get up to go to the bathroom  I can't actually pull myself upright in the bed so my husband has to help me upright and then although I normally can do, do those sort of things and, and get up off the bed without help it, I can't when I'm in a flare up. He has to pull me upright off the bed and  it becomes almost impossible to walk across the floor. 

It is, I can, I get there through, really through will power I think. It is, is, is very, very painful to move. But I manage to, to still walk about a bit when it's like that. And I just have to really sort of cope with it. When, when I asked the doctors for help with that the advice was to take the full amount of the anti-inflammatory drug, the, the Voltarol. But I don't find that it makes any difference when it, when it happens.

If I take extra of those it, it doesn't seem to have any difference whatsoever. I take extra painkillers as well and they don't seem to touch it. So it's just a ma, a case of kind of struggling through it and just staying in bed until is settles down again. It doesn't usually stay flared up for very long, usually for perhaps one night and one day and then I go back to normal. But I do find that difficult to cope with.

Her children adapted practically to her difficulties and she feels that has made them generally more thoughtful and helpful.

Yes. Quite reasonably really they weren't difficult children they seemed to adapt very quickly to the fact that I, I was limited in some of the things that I could do. I think children, I think children do, I think they're very accepting and nothing seemed to be a great problem when. It was a little difficult to lift my daughter into the bath when she got slightly older, not big enough to manage completely by herself but not a baby anymore. 

But we got a stool and she managed to sort of climb up and I helped her but I didn't have to take her full weight and, they, they, they did nice things, really. They knew I couldn't pick them up off the floor to give them a cuddle, so they would clamber onto the, we had a trestle table in the kitchen, benches, and they would get on the bench and get on the table, so they could then stand and I could give them a bit of a hug without actually having to pick them up and. 

They were very good really my life was very happy then you know, I had quite a lot of pain but it didn't really seem that important because you know, I had my family and it was lovely bringing up the children and we had a fairly, you know reasonable life. 

Yeah they, and they have grown up fairly thoughtful and helpful, I think. I don't know whether they would of done anyway or whether it was just more was required of them. As they grew older, they had to do quite a lot. But then having said that, not really, not more really than you expect normal children to do if you expect them to help out and be responsible and generally, you know, not just think of themselves, that you know it all seemed to work, work quite well.