Interview CP21

Age at interview: 32

Age at diagnosis: 26

Brief Outline: Back pain came on after injury at work, 1993. Surgery: Discectomy. Treatments: Pain clinic. Epidural steroid injections. Pain management: NHS outpatient pain management course. Current medication: dihydrocodeine, tramadol (slow release), amitriptyline, gabapentin.

Background: Administrator (trained as nurse); single.

Used to find that her pain flared up when she over did things but now finds it more difficult to...

No, in the beginning I could almost predict when I was going to have a bad day, to a degree of, if I'd go out, if I'd do too much, if I'd do some cleaning, use the hoover, if I go shopping, I can almost predict that the next day I would be bad. And, certainly for the first two or three years, I was actually fairly accurate with that. 

But, as time's gone on, I found it becoming less and less predictable. So yes, I do tend to have bad days after I've done too much, but sometimes I don't and sometimes I have bad days for virtually no reason possible. And that's actually been the most frustrating part, is the fact that I can have a bad day and think 'I've done nothing, why am I worse than I was before?'  

But I don't know, it's kind of something you learn to live with and I think that's part of the acceptance of it, is that you learn, you know that you have this for life and you have to learn to manage it rather than get rid of it. And it, and it is all about managing it rather than the pain managing you and I think that, certainly in the early days, it managed me. I mean sometimes it still does, when you're really bad and can't walk, but sometimes it's not, you know, I am learning to get the better of it sometimes now, but without overdoing it because I do know that I'm still very good at overdoing it sometimes.

Received a type of electrical stimulation combined with acupuncture at a pain clinic which gave...

The other, the only other therapy I've tried is actually acupuncture. I first had it pre-surgery, because my own GP actually does acupuncture and so I had about three or four sessions of needle acupuncture before my surgery, which it helped to a degree, sort of helped with my back pain as such, but he always managed to hit the spots where the nerve pain was worse.  

But, you know, it did make me, make things a little easier for a while. But then, after my surgery, I was then, that's when I was then referred to the Pain Management Clinic and they actually do what they call electronic acupuncture, which is, I mean I don't mind needles, so the needle acupuncture didn't bother me at all and, to be honest, you don't really feel the needles going in, but in the electronic one, you hold the earthing, earthing part of it? I think it's the earthing and then they basically go up and down whichever part of your back with a pen. It's not a proper pen, it's metal, but they call it a pen. And it doesn't hurt at all and they do that for about five minutes. 

You know, that wasn't too bad, as I say. I've had it for a bit, but I don't have it now because again it's got to that point where it doesn't have such good effects as it did do at the beginning but then they sort of do warn you that, if you have it all the time, you can get to a point where you get used to it and then it's ineffective. So I had a sort of course of it, of four sessions in two or three months and then you have it three to four monthly after that.

The combination of medicines she uses doesn't take the pain away but takes the edge off it.

But, the other thing that you also learn is that most medication is actually for acute pain, it's not for chronic pain. So that's why sometimes these drugs that they give you aren't always effective, which I didn't know at the beginning. Which is why I've ended up on a cocktail really.  

But also, you learn that they don't tend to take the pain away. What they often do is take the edge off it and just get it to a level where you can carry on and do things without your back stopping, well, without my pain stopping me really, but my back. And, that for me has been really, really important, it is having that.  

Because I remember when I was really bad and I just got to a point where I couldn't do very much and now I'm at a point where, in combination with the medication and my epidurals, I am almost living more than I was a couple of years ago. It's sort of been a question of balance really, balancing out my social life, my medication and my work and I have managed to get it all to balance and I mean the one thing you have to be aware of on long term medication, is side effects and I definitely know that I've got some of them.  

I mean I can't take things like Voltarol or Brufen any more, because of my gut. I do when I'm desperate but I usually regret it for about a week afterwards.

Explains that she takes gabapentin, an antiepileptic drug which also relieves nerve pain.

And the most recent addition is gabapentin which... It's what's been amazing with pain management is they're now using a lot of drugs that weren't designed for pain management. Gabapentin was actually an anti-convulsant, but they found it has a really good affect on neuropathic nerve pain, which is the reason I'm on it. And I've had to increase the dose, I've had to increase it slowly, because in combination with everything else I'm on, when I first started taking it, I was just absolutely, I was not with the world for a few weeks, I was just absolutely asleep.  

But, as time's gone on, I've got used to it. I'm absolutely fine on it again now. And I've got to a level at the moment where I haven't had to increase it for a few weeks, so I'm hoping I'll be able to keep it at the level where I am for a while, with room to increase if I get worse again.  

Found that epidural steroid injections only helped her leg pain and not her back pain but she...

Yeah, I know that, certainly for the lumbar epidurals that I have, it is a steroid, a long acting steroid they inject in. I'm, I know they do joint injections which I don't know what they do for that, I know friends who've had them. It's, the hospital, who look after my care and my pain management, I mean, the one great thing about the epidurals is you're in and out literally.  

The last time I was there I was probably in for three hours and then I was home again. Because it's all done as a day case and because it's not a theatre, it's not an operation, you can eat and drink, so you don't have to starve yourself in the morning, you know you can take your normal medication and everything as well. 

So you go in, you're admitted and the consultant obviously will come and do the consent form as you have to for these things, and basically they wheel you round to the treatment room and inject the steroid in and that's it done. 

I know that the first time I had it I was actually surprised at how much it hurt and it really does hurt, but they, they're injecting fluid into your epidural space and it's a fair bit of fluid they're actually injecting in and, although I knew it was going to hurt, I wasn't quite prepared for it. I think the thing is, I've had, what, five epidurals now, so I'm so used to it that I don't really think very much of it now when I go in. 

And it's, I sit there and I remind myself that it's worth it if I get some relief out of it. The one I had earlier this year that only lasted for a month, I remember afterwards thinking 'do I really want to go through all that pain again if it's only going to last a month' but I did and it's lasted longer. And I mean when you have them, what they say, what they say to you is it tends to work better on your leg pain than on your back pain. 

It often doesn't work for your back pain at all and in fact for the first time ever, when I last had it done, I ended up with a really, really bad back. And my back pain was unmanageable for a couple of weeks, then it settled down again, but my legs have been much better since.

Felt that although there are many negative things her experiences of pain have opened up positive...

I think it's kind of changed me sort of, you can put it really into the negative and the positive and most people only ever see it as a negative. You know, I mean I had to leave a job which, which I really did love, you know I would still be in it now, I'd probably still be in it 10 and 15 years time had I still been able to continue in nursing. You know I've ended up in debt. 

I've lost friends, but I have grown so much as a person. Like, you know I've really become to know so much more about me and you learn not to take the trivial little things for granted. And it is interesting you kind of, I guess you learn how the kind of support that you want so that you can therefore support other people when they need it. 

I mean one of the best things really was that I came to faith and it's something that I, if somebody had said to me this time last year or two years ago 'You'd become a Christian. You'll work for your church.' I would have a laughed at them and said 'No, I wouldn't.' 

But I have and you know since all that's happened, you know my depression has improved. I've accepted my back. I've accepted the fact that I have chronic pain. I mean I have bad days still where I get really fed up but I cope with it so much better. You know I've become more involved with supporting other people who have got back problems especially. 

And I, you know, I just look back and think you know I would have missed out on so many opportunities, you know would I have still stayed the same workaholic that I was and you know because of all this I work part-time where I've been able to see my niece grow up, you know, fairly frequently and keep in touch, you know I have gotten closer to my family as a result of it.

You know, that's something that nobody else can take away from me. You know, but it has been a struggle. It has, it's been a really, really long journey and parts of it have been easy and parts of it have been really tough and I know that it's going to continue like that. It's not going to be perfect forever more. 

But I suppose what I know now is that I can get through the tough times. You know I also have a good support network in situ and not, I'm not afraid to ask for help any more which was something that I was for a long time.

Started wondering whether she was imagining the pain so stopped talking her medication and found...

I would say it was nine months after the surgery, and I just, my mood just plummeted and I became severely depressed, I was severely depressed and basically I'd had enough. I went through three months of, I didn't want to be here anymore, because it was just very much just this 'Why me?  Why have I got to have all this pain? I've got it for the rest of my life. 

I've had it four years, I'm going to have it for another sixty or however many years I live' and, you know 'And I've lost my job because of it. I've lost friends because of it' and I had enough.  

It was almost as though I think that sort of around that time, coming up to around the fourth year, for some reason that was a time it really hit me what having chronic pain actually meant. Which is then, when I looked back at what I was saying in the first year of 'Oh yes I can cope with this, it's fine' and as I say, three years later I wasn't. But, amazingly, I mean my antidepressant medication was changed, and I was very lucky.  

My GP was very, very good and my pain was managed reasonably during this time. Although it's strange, I often find the times when your mood drops is the time that you start questioning yourself as well.  'Have I really got pain?  Am I making it up?  Is it in my head? Maybe everybody else is right, maybe I'm wrong'.  And it is, it is nearly always at the times when you're really bad and it just does.  

And then I go through these times of where I've stopped taking my medication, just, not so much the antidepressants, but my painkillers, proving to myself it was in my head. But of course I was very lucky if I got past sort six or seven hours, at which point I would be in excruciating agony, you'd have to take them and then it would take another two or three days to get back on top of the pain again. And at that point then you can convince yourself, yes okay, it's the pain medication that was working or is it a sensible level.  

But, even now, I still have days like that, where you still sit there and you think 'Is it in my head?' And I know it's not, I mean, I'm not stupid, I know it's there and I know I have it all the time, but I still question it. But it was, it was definitely worse then at that point. I think, as I say, just because I was so depressed.

Finds it difficult to form relationships because it is hard to find someone who will accept her...

But then the other issues sort of relating to that really is relationships because to meet somebody who would accept and understand that I have a bad back that can dictate to me things that I can and can't do and who would be understanding and okay with that isn't easy. 

You know I went out with one person and he just found it really hard. He kept saying to me 'Be positive' and I know people are trying to be really upbeat about it, but there's a difference between being positive and being realistic. People see me as being realistic as being negative and it's not. It's just that I now know my limitations. You know, when you don't go out to places where people normally meet partners. You know it gets very, very difficult.

Feels that friends should ask her whether she wants to talk about the pain rather than avoiding...

I think friends and how they react to you, it's strange. It's actually changed over the years as to how I want and need them to be with me. I mean, in those early days, I really did need so much support, I mean, especially when I had to stop nursing.  

And, you know I didn't know about a lot of these other places now I can get information from and you do need somebody to support you but also to be realistic. 'Cos it's amazing how, in the early days, my friends they were 'Oh you'll get better, you'll be fine' and it is the advice you kind of automatically give out to people, but it wasn't what I wanted to hear. I needed almost, I think it is almost like having that permission that I am allowed to get really angry with it. I don't have to put on a brave face and say 'Yes, I'm okay, when I'm not' and I think some people did think I was faking it.

And then, you know, sort of, my friends knew that it was going to be long term and carry on and suddenly it was like 'We won't ask you about it ever again'.  And I do have some people I know who won't ask me about it, ever. You know, I don't know whether it's a case of their hoping it's a thing in the past, or they'll think 'Oh she'll tell me anyway, what's the point of asking?'  I don't know what it is. 

But it is almost as though it's one of those issues that we'd better not talk about. And I don't know, I don't like that personally because, I think if you're with friends, you need sometimes permission to explain to them exactly how it is for you and the fact that it does have implications for you, you know, especially if you're going to go out socialising.  

One of my big things for a long time would be when I'd go out shopping, after ten, fifteen minutes I have to sit down for half an hour and some friends just hated that.  They just couldn't believe how bad I'd become.  I mean, I'm lucky now, I can walk a lot more.  But, you know, it is almost like 'Well, she's that bad, we'd better not talk about it just in case. Maybe she'll start crying on us'. And you just think 'Hang on a minute, ask me. Ask me what I want, how I want this to be in the relationship, not how you want it to be' and I think that's very much where you get into that you start thinking about everybody else's feelings.  

And it's something that I put up from such an early time, because of the reaction I was getting from people, that I just thought 'Fine, I will lie to them'. And so you just, there are certain friends that I know who have been brilliant, who've been with me throughout the whole journey, and they're the people who know. But there are some people who I've lied to and I will say 'Yes I'm okay thank you'. It's very much like one of those standard responses that just comes out without you thinking. 

You know, sometimes there are people there who will say 'how are you' and you think 'why the heck did you ask me that question 'cos you really don't care'. You just know, as soon as they've asked they're not really bothered, 'cos they're thinking several things ahead. And, you know, I don't like false sympathy, people doing it just for the sake of doing it, to say they've been sympathetic.  

You know, I'm very much you either ask or you don't. But I do think you should really sort of say to the person, you know 'What do you want, do you want me to talk about it or not?'  And a lot of the time I don't want to talk about it because your life becomes almost focussed on it. But then there are times when yes, you need to.

On long train journeys she arranges for assistance with her bags and takes a hot water bottle.

You know sort of travelling by train if I've gone on some long journeys, you know I sort of if I'm carrying a really heavy bag, I phone up and get the guys to help carry my bag on and off the train. 

The amount of looks I've had when I've gone to the restaurant car saying 'Can you fill my hot water bottle up for me?' And most of them have been pretty good but some of them just look at you and you know like huh 'I've got a bad back'. You always feel as though you have to justify yourself. You know they usually have filled it for me but I kind of, you kind of have to get past that embarrassment of carrying a hot water bottle down the train which I am now. Well past that.

Says that prescription charges can mount up but found out about pre-payment certificates which...

But it's amazing that things like, that you don't account for, things like prescription charges, because I mean prescriptions are now '6.20 I think each and, when you're on six a month, you can't afford that. I mean I was lucky I knew about the prepayment certificates you get.

Tell me about that...

You can either get the certificates for four or twelve months. The four month I think is about '33 now and the twelve month is just under a hundred.  And, basically, what it works out is, with the four month one, if you have more than five prescriptions in a four month period, it's cheaper for you to buy a certificate. So you basically buy your certificate and then you just present it when you go and get your prescriptions and you don't pay for them because you've already prepaid.  

When she went to a pain management clinic she was a relieved to be told that they believed her pain.

But I was lucky because at that clinic appointment they then said 'Would you like to be referred to the pain management team' and I said 'Yes please'. The first time I went to the pain management clinic, they were asking me about my pain, how it affects you, what it's like and you tell them and these people they sit there and they actually a) they listen to you, but b) they don't question you.  

When you go to, when I was going to the specialist before my surgery, everything is questioned. You know, 'First of all you said your pain was like this, and now you're saying it's like this' and 'What do you mean?' and you almost feel that they're trying to tell you, 'You don't really have pain and you don't know what you're talking about'.  

But as I say, you go to a pain management clinic and it's like 'Okay you are telling the truth and we believe you' and it makes a huge difference actually, having somebody who will believe you, without questioning it. Because you go through, you go through virtually everybody questioning you and wondering if you're telling the truth or not.

Says becoming a local representative for the charity Back Care has been a positive thing to come...

No, when sort of after probably about three years, I decided that I had to find something good out of having a bad back and that for me was becoming involved in Back Care. Because, what I found was, in the first three years, was just that there isn't information out there for you.  

It's almost as like the medical profession don't want to tell you that it's going to be chronic and long-term. I don't know whether it's because they feel a failure 'cos they can't do anything, or they feel that you're putting it on. I don't know what it is, but nobody mentions chronic pain at all. 

And, looking back, I wish somebody had been totally honest with me from the, maybe not from the beginning, but sort of maybe from after six months the chances of recovery are slim for most people and I would prefer that somebody had been honest with me at that point and said 'Okay this is how, this is what we have to do, where we go'.  

But they don't do that and so, for me, it's been really important to help try and support other people, for two reasons really.  One is that I wouldn't want anybody to go through what I've gone through. You know, the whole thing really, you know loss of my job, loss of friends, debt, everything. I wouldn't want people to go through that as well as having a chronic health problem.  

But also, if people are going through it, I'd like to think that I can give them some support and advice on where to seek help. And I think sometimes that's what you want, especially in the early days, you want somebody just to listen, who will listen to you and who will know exactly what you're talking about. And that is one of the biggest, it's just such one of the biggest helps that you can have when you have chronic pain.