Interview CP36

Age at interview: 42

Brief Outline:

Back pain since 1989 (in remission at time of interview). Treatment: Physiotherapy, ultrasound, mobilisation. Pain management: Outpatient NHS Pain management programme. Current medication: None. Past medication: ibuprofen, co-proxamol, diazepam.

Background:

Pensions administrator; married; 2 children.

Tests revealed changes to the discs in her back but they did not warrant surgery and she...

I had x-rays done and I had a CAT scan and an MRI done. This showed that I had problems with 3 discs in my lower back but nothing that would warrant being operated on to sort of relieve the pain, it wasn't that severe, it was just continuous, and I think also if they had operated on one disc it would have put pressure on others. And it wasn't that I was sitting there particularly wanting to be operated on, I just wanted something done, I didn't care what it was, I just wanted something done.

How did it feel to be given the diagnosis but not a solution?

Well to get a diagnosis and no real solution at the end of it is really very disheartening, because you're looking to the professionals to come up with a solution, to come up with something that will make this better, something that will make this go away. You know, the advances in medicine now are fantastic, but why have I still got my pain? You now, why couldn't they do something? 

Back pain, it doesn't seem like a terribly complicated thing to be able to treat. But it obviously is more complex than maybe many people realise and although advances have been made in certain areas of medicine, perhaps not the same, I don't know, research and sort of development of medicine in those areas have been made.

Was suspicious of pain management because it involved psychology and she was concerned that the...

Who told you about pain management?  

How did you feel to find out about that?

When I was referred to a second consultant, the reason that I was referred to him was because he had a slightly different outlook to the first consultant I saw. The first consultant was really very highly regarded for his success in operating on backs and he obviously felt I wasn't a candidate for it.  

The second consultant had a much more sort of holistic approach to pain and I believe he also did acupuncture, although I never actually got acupuncture from him, but it was he who sort of came up with the idea of going on the pain management course. 

And, at the time, I didn't really appreciate what that would be and in fact I was maybe a wee bit suspicious about the Pain Management Programme because a lot of it was based on your thoughts and the psychology behind pain and I had initially sort of interpreted that as 'So do they think it's all in my head?' you know, I don't have real pain I just need some, you know help with my thoughts, and this pain, that I'm obviously imagining, will go away. A bit disheartened at the thought of going on the course but, once I was actually there, it was a case of I wish I'd had this years ago. I wish I'd had this right at the very beginning.

Learnt, on a pain management programme, how negative thoughts and stress affect her pain and was...

The Pain Management Programme also sort of covered, sort of physical fitness and I hadn't realised how unfit I had become and how shortened many of my muscles were. You know, my hamstrings had shortened dreadfully and I still have problems with that.  

But it certainly put me on the right track, and I also hadn't realised the affect that my thoughts had on my pain, you know the sort of negative thoughts and the tensing and, you know, it was explained to us about the, the build up adrenaline when you're almost in panic mode about this pain and the symptoms of the build up of adrenaline, you know the sort of almost breaking into a sweat and being quite shaky etc...  

I mean, I had experienced that, but not quite worked out what it was. And it was actually just comforting to find the reasoning behind some of the sort of symptoms that I had and some of the things that had happened me. It was actually just quite nice to find out, well there's a logical explanation as to why that's happening, and I can actually do something about that.  

I know that a lot of the Pain Management Programme as well was based around relaxation techniques and, again, I was sort of very sceptical about whether that would have any affect on my pain at all and was quite amazed the first time that I came home clutching my relaxation tape and I said to my husband 'Now this takes 20 minutes, so I don't want to be disturbed for 20 minutes' and sort of rushed through to my front room and lay down on the floor and lit candles, I had a nice cosy fire going and I slept for about two and a half hours on the floor.  

I just dropped off to sleep half way through this relaxation tape but it was bliss, it was bliss just to get that, that release, that escape from the pain.

Used to just go to bed when she had a flare-up but now keeps active by pottering about and doing...

When I have a flare-up now, my, the way that I cope with it, before I would have just probably gone to my bed. Gone to my bed or lain on the floor. Now I tend to try to keep on the move. Just very gently just potter around the house and I'd do some very gentle yoga exercises just to sort of loosen my spine up a wee bit.  

And it's one of these things, you know, I have done yoga classes and I've always adapted postures to kind of fit round my sort of lack of movement in certain areas. But, when I have a flare-up, I can't just do like a set yoga routine. Some days I find I can do one thing and other days I find ''oh that's actually making my pain slightly worse". So I drop that.  

But I usually find that there is something that I can do that will just help me to stretch my back out a wee bit and just give me a wee bit of relief. But it varies from one time to the next. It's not as if I have a set routine that I do when I have a flare-up.

Found manipulations uncomfortable and although she got some relief didn't think it was worth the...

Other treatments that I have tried, I went along to a chap who was, he wasn't an osteopath but he did manipulation. I can't remember what he actually called himself. Can't remember. But he actually manipulated the joints of the back, which was horrendous when it was actually done, because it was like, you know somebody cracking their knuckles, except it was your back that was doing it.  

It was really frightening to find that happening to your back. However, I have to say after sort of, I had about 3 session of that, which again, you know, horrendously expensive, it was something like '60 a session with this chap, but I have to say that did make a bit of a difference but, cost wise, I just could not continue with that.  

Tried an osteopath. That, oh, just made me worse. Tried reflexology. Oh that didn't work out for me either, that, I think that just works for some people and not for others, but that just wasn't for me either. I now treat myself to an aromatherapy massage once a month. That's my treat, that keeps me going.

Was prescribed ibuprofen and co-proxamol, and diazepam which she reserved for severe muscle spasms.

My doctor had initially prescribed ibuprofen for me and I sort of took that for quite some considerable time. I couldn't actually tell you how long, but it must have been for months at a time. I also was prescribed diazepam, which I kind of kept for emergencies, when I had sort of severe spasms, I would take a diazepam just to try and relax the muscles. 

But, again, my doctor had warned me that it wasn't something that I would particularly want to take on a regular basis. And, the only other thing that I really used was co-proxamol. And using those three things, I was generally able to control my pain.

Explains that stressful events like Christmas, bereavement and dealing with young children can...

Christmas time particularly, my own parents have always come to me for Christmas but my father is now in a nursing home and he has dementia. So Christmas day is actually quite stressful now, because Mum and I go to visit Dad and it's really quite heartbreaking leaving him, much as he's unaware, it's heartbreaking leaving him to then come back and try and have a normal Christmas dinner.  

So Christmas can be quite stressful and I'm sure everybody, you know, goes through these kind of difficult times. Be it, you know, illnesses within the family or bereavements or whatever it might be, and stress can have a huge affect on your pain levels and on your mood and I think, when you are in kind of low moods, your pain actually feels worse. Whether it is or not, I think it actually feels worse. It's more difficult to cope with. 

It's like when, you know, my children were younger and not sort of sleeping maybe terribly well and you would sort of get up in the morning and, because you were tired, it seemed to be worse, your pain seemed to be worse and you didn't cope with things in the same way because you were tired. But certainly you know, yes, stress, lack of sleep, low mood, it does definitely affect your pain levels.

Was worried that her children might remember her as "Angry Mummy" or become grumpy themselves.

One of the things that I had a kind of huge hang up about was the effect that I had on the children and, you know, it wasn't just the playing with them, it was I didn't want them to remember me as being grumpy Mum or angry Mum or always saying to them 'Don't do that because' you know 'if you spill that it means I have got to get down on my knees to mop it up' or whatever.  

They would fill the paddling pool 'Don't splash all the water out the paddling pool because it's taken me like 2 hours to fill it' you know, carrying buckets of water or whatever. And, and I just really, just very conscious that I might be having a negative effect on the children and, you know, the way they were growing up.  

The pain management programme helped me quite a bit with that, to sort of realise that if things will happen with the children then, are they happening just because of you? Probably not, they probably would have happened anyway. You know if one of them has sort of a grumpy nature, she's not got a grumpy nature because you've moaned or whatever, they've got a grumpy nature because that's the way they are.  

So that was very helpful and I got quite a lot of information from the support group as well on managing pain and dealing with, with children as well. Sort of involving them in things that you can do, rather than thinking about all the things that you'd maybe want to do with them but you're not able to. You have to kind of focus on what you can do.

Feels that when she puts her make up on she looks healthy and people don't appreciate that she...

I think for the friends who really knew me, they understood what was, what was going on. For people who maybe didn't know me that well or for, you know, a stranger to recognise my pain would have been very, very difficult and I'm also sort of bringing into this sort of the medical profession as well, because very rarely did I get up in the mornings, pain or no pain, I would put my make-up on and, when I've got my sort of, my mascara on and my lipstick on, I look fairly healthy and I think if somebody walking down the street looks fairly healthy why should you think otherwise?  

And I think going along to my doctor sometimes and saying, 'You know, I have this terrible pain and, you know, I find it difficult to sit and I find it difficult to walk and I find it difficult to do the next thing', but I look the picture of health and I think it's very difficult to, for people to put the two things together. They think if somebody is unwell, then they should look unwell.  

It's very difficult to put together somebody who looks perfectly fine and dandy, in fact, you know, really looking well to then equate that with somebody who is in pain. Like I say, it's really only a couple of very close friends and a couple of members of my family who I think appreciate how things were. Others just did not understand the two things going together.

Found socialising difficult because she had often been lying on the floor all day and had nothing...

I am actually very lucky in that my pain is really quite intermittent these days and I find it much easier to cope with social events, long days on your feet or full day events.  

When I was in considerable pain, I would sometimes get round it by perhaps resting during the day so that I could go out in the evening type of thing.  

But, often it wasn't the physical difficulties that hindered me going out to things socially, it was very often my sort of mental attitude. 'I've not been doing anything, so what am I going to speak about?'. If I do meet with people 'What have you been doing today?', 'Well actually I've been lying on the floor most of the day because my back's been sore'.  

It's a conversation killer. So a lot of it was my mental attitude about going out. I didn't feel that I was good company. I didn't feel that people would want to talk to me about anything other than my back pain and that wasn't something that I really wanted to do on a social occasion when I went out.

Found out about the '52 week rule' that meant if her job didn't work out she could go back on her...

One of the things about going back to work was coming off benefits. I had been entitled to incapacity benefit and that was comforting in a way. Much as I didn't feel good about taking the benefit it was comforting that I had that regular income and, by going back to work, you were really loosing that security, you didn't have that childlike security blanket there, that knowledge that your income would still be coming, coming in.  'What if I take this job and it doesn't work out?'.  

Well, I was in a fortunate position in that my benefit, and I don't know what the regulations are behind it, but my benefit was covered by a 52 week rule that, if I had to give up work for medical reasons within 52 weeks of starting the employment, I could get my benefit back at the same level I was on. Now, in a way, I had that security. Now I don't.  

I've gone past that year and there could still be a flare up and there could still be problems but I've had to let that go. But it's quite a daunting thought to give that up. You are still sort of walking the plank slightly.

That's interesting, You were saying how you'd found out about the...

When I decided that I was going back to work, one of my husbands friends who worked for the Benefits Agency at that time advised me to write in and advise the agency that I was going back to work and to apply for what they called this 52 week rule, that if you had to give up work for medical reasons prior to the 52 weeks that your benefit could be reinstated to the level it was at before you went back to work. 

 I don't think it's one of these things that's you know, the knowledge which is, is freely available. I think certain citizen's rights groups would be able to advise people about it and, asking the benefits agency directly, they would probably be given advice about it, but I don't think it's one of these things that's kind of advertised.

Requested a desk assessment at her workplace and says that the equipment provided by her work is...

The office that I work in are actually very good at thinking about employee sort of health and safety issues etc... and you can request, which I did, a desk assessment to see whether your chair is adjusted properly, or you need a foot rest or anything, any other pieces of equipment. A couple of things were supplied, not particularly in relation to my back.  

The chairs are adequate, in fact they're very good and I'm again very fortunate in that the job that I have I am not sitting for sort of the full 5 hours that I work each day. I'm sort of constantly at my desk, up to get something, back at my desk, up to see so and so, back at my desk.  

So, the fact that I have that kind of just natural freedom to get up and move about, it's not something that I have to sort of excuse myself from my desk when I stretch my legs. Just, it's a natural break in the work that I have that allows me to keep jumping up and down like that. So it's not something that I need to explain to my colleagues 'I need to get up every now and again otherwise I become really stiff'. It's part of my job, so it goes unnoticed the fact that I'm doing this.  

Saw two different consultants one who said nothing could be done and another with a more holistic...

You saw a couple of consultants that you've talked about. Am I right in thinking that you had not a really good time with those consultants?

My GP had referred me on to one consultant initially who, when he examined me, basically said 'Well there's nothing I can do for you' and sent me away, and I left the hospital in tears, because, you know, once again it was just hitting a brick wall. 

You were just were so desperate for somebody to do something and when somebody says 'Nothing I can do' it's absolutely devastating. One of the nurses actually caught me on the way out and found me crying and had informed the consultant that he'd obviously upset me and he contacted me at home very nicely and invited me back for a further consultation to discuss the matter further.  

And I went along with my husband this time, just for moral support, and that was when I was told 'Well, it's really just old age.  Again there's really not much we can do about it, you've just, your back has got older quicker than the rest of you'. 

And at 33 at that time, I sort of said 'Well, why is that so'.  'Well, why do some people go bald and others don't? Why do some people get grey hair and others don't? Its just luck of the draw.' And I was actually told that things would probably get worse during my forties and then better in my fifties, but I hope that's not going to be the case.  

You then said you were sent to see another consultant

Yes.

Who told you about pain management. How did you feel to find out about that?

When I was referred to a second consultant the reason that I was referred to him was because he had a slightly different outlook to the first consultant I saw. The first consultant was really very highly regarded for his success in operating on backs and he obviously felt I wasn't a candidate for it. 

The second consultant had a much more sort of holistic approach to pain and I believe he also did acupuncture, although I never actually got acupuncture from him, but it was he who sort of came up with the idea of going on the pain management course.