Interview CP07

Age at interview: 56

Brief Outline: Back pain since 1981. Failed back surgery syndrome. Diagnosed with Arachnoiditis, 2001. Surgery: laminectomy, correction of laminectomy and spinal fusion. Pain management: Learnt through support group and books. Current medication: distalgesic, co-proxamol, maprotoline, oxycodone (Oxycontin) during recent flare-up.

Background: Retired careers officer; married; 2 children.

Learnt to manage her pain through a support group and several self-management books that she...

I learnt a lot about pain management strategies through the patient support group which I became involved in because as I say the nurse who started it had actually learnt her own strategies from a pain management programme. One was not available here at that time. In fact still I would have to travel to London to go on a Pain Management Programme which is what 60 miles away. 

But I found that by talking to people who had been on courses, and I learnt a lot. Also because we actually, as part of our group meetings, we used to take topics like pacing, goal setting, relaxation and actually have a group leader take a session on that topic. You know and people could come and learn about it that way and practice it and talk about the issues around it. So we did a sort of, like our own mini self Pain Management Programme here. 

That may not be ideal but for a lot of people it was the nearest thing going to get to a Pain Management Programme, either geographically or because the waiting lists are so long and even if they were on waiting list it had enabled them to become familiar with those sorts of ideas while they were waiting which was often helpful.  

I chose not to apply to go on a pain management course but I did do a huge amount of reading. I've read a lot of the medical texts and the books written by other patients who were using those sort of strategies, particularly American people where there was a longer history of pain management and I found that enormously helpful and I was sure that I could have been helped you know to get a more, a quicker and more sophisticated knowledge about it but I think there was an awful lot you can learn just from reading. There are some very good self help texts on the market when I was first introduced to the ideas of pacing, goal setting, relaxation, that sort of thing, exercise. 

I was very fortunate because a health professional who had been on a Pain Management Programme was actually asked to write his own account, a patient account, of his experiences and that was a very good book to have as a learning tool. But I think for someone who perhaps needed a more social context to learning those strategies it might have been more difficult. I happened to find it helpful and relatively easy to learn things by reading it. It just suits me but it doesn't suit other people. 

I mean of course it does mean that if were in a group where you are learning pain management you get a lot of support from the other patient members whereas if you are doing it by yourself, reading it from a book, you are down to your own resources  so there are pros and cons but that was how I learnt and I found it enormously successful and very very helpful.

What was the book?

The book I used was called 'Coping Successfully with Chronic Pain' by Neville Shone who actually lives in Scotland or did at the time he wrote it, he lived in Arbroath, and I can't remember what sort of health professional he was but he was also a health academic so he had a very good insight into what was happening and wrote in a very lucid clear way. I think it's still available. I'm not sure. It was in paperback anyway. But certainly it was great. My copy is very well thumbed. I had sort of marked all sort of things in it, written comments.

Finds overdoing things can cause flare-up but they sometimes don't come on for 24 hours.

Unfortunately nothing can be done about my condition, it's chronic scarring around the spinal membranes and there is no intervention. All that can be done is to manage the condition with drugs if necessary, opioid drugs, and really to be as competent in pain management strategies as I can be in terms of pacing myself, having realistic goals, exercising where I can which is very difficult because it's the same story, any activity tends to cause me to go into a flare-up, where I become sort of virtually bed-bound and have hugely increased amounts of pain. 

So the whole time I have to learn to walk effectively a tight-rope to manage the condition, and yet to be as normal as possible and that can be really difficult and you often fear that you're failing because you perhaps want to do something, you need to do something and you push yourself and then you find that you have done too much. By which point it is too late to retrieve the situation. You often don't actually get the bad effects of overdoing it for even sort of 24 hours later by which time it is over and gone. You can't go back and you just have to live with the consequences.

Says that bad flare ups still fill her with dread and can make her depressed even though she...

The times when my pain flares-up beyond its usual background permanent level. At two sorts I mean they, it might be because for instance I've been shopping and I've lifted groceries and I've driven to the shop and back and I'm tired and I need to lie down and recover from that but I will then be able to get up in say an hours time and you know, start life again as it were and do something else. 

So that's a sort of holding operation to lie down, but the times when I have a really bad flare-up still fill me with dread every time it happens. Although it's happens so many times, each time is just as bad as the first time. It's the increased pain for a start and it's a tension, the stress that goes with that. It's the depression because in my case I become much more immobile, I have to perhaps spend all day lying down rather than at intervals during the day. You know, times when I actually have to force myself to get up to go to the loo is as much as I can bear to do that. 

And you become a sort of a little island by yourself, I think pain is very, very isolating and when it's really bad, I don't know if other people do this, I just withdraw into myself. I don't want to talk or communicate, I certainly don't want visitors. 

I can manage with my husband around because he is so sensitive and acutely sort of tuned in to me but anybody else I find very stressful to have around if I'm in that state. And now that I know what is the pattern is likely to be, I know that I'm just going to have to endure what comes and put up with it. 

The fear that comes with that is not knowing how long it's going to last, how bad it's going to get and is it ever going to stop. Now experience tells me it always has stopped, but that can be anything between a couple of days or six months and not knowing you know, what you're dealing with absolutely sort of saps your will basically to go on. 

I suppose I'm lucky because really (a) I'm quite a loner by nature so it doesn't actually worry me being by myself for a lot of the time, although anybody can have too much of their own company. And over the years I've learnt to accommodate it anyway. Secondly I love reading. Thirdly I'm a Radio 4 addict so if I feel not even well enough to be able to concentrate on holding a book and thinking about what I'm reading I can always listen to the radio. 

Says people with chronic pain are vulnerable and need to know which complementary therapists are...

I think anyone with a chronic condition is going to probably consider using complementary therapies at some stage. It is problematical because there is no sort of protocol you can follow as to what you should try and who you should try it with and patients are very vulnerable because they may be told by somebody they know or respect or who's trying to support them. 

You know, 'Why don't you try and go and see Mrs. X who does, you know, such and such a therapy. She helped Mr. Bloggs terribly' you know and so forth. And you meet that a lot. So first of all you have a problem with what you start with is appropriate for your condition and there's no real way of choosing. 

A number of pain clinics now use acupuncture but there's no real research as far as I know as to why it works for some people and doesn't work for others. It seems to be a higher than placebos response but nobody seems to know why. 

So the pain patient finds himself in a situation where they are trying a therapy, they are normally hopeful about it, have a lot of hopes pinned on it being successful and it may work for them or unfortunately, it may not, and if it doesn't they are plunged back again into this sort of cycle of despair, disappointment, depression and so forth, until they try the next thing. 

So it becomes a sort of a situation where you ricochet to one therapy and if it doesn't work for you ricochet to another one and there's no rhyme or reason to it, or you can spend an awful lot of money and that's even if you have good therapists and unfortunately it's often very difficult to know who are good, reliable therapists unless you are prepared to do quite a lot of research. 

There are some ways of finding out using professional registers for people like acupuncturists for instance, or chiropractors but you have to be quite a knowledgeable and dedicated patient to sort of find out all that information and of course at the very worse you become, you may find yourself in the hands of someone who is a complete charlatan or who actually does you damage in the very worse scenario. 

So it is very problematical and although personally I think it is worth trying things, I think you should do your research, try to go into it with realistic hopes and try not to be too disappointed if it doesn't work for you. 

Uses medication as part of her plan of managing a flare-up of pain but disciplines herself not to...

How did you come through that flare-up?

Well my priority obviously is to have sufficient and appropriate pain medication to try and hit the pain on the head so at least I get intervals of respite even if they are not continuous, and hopefully enough that I can sleep some of the time. 

Because sleep is the first thing that goes out of the window and nights become really, really difficult and of course also if you're taking heavy duty pain medication you tend to become rather dozy anyway so you may sleep a bit during the day and then you can't sleep at night anyway because you've slept during the day. 

How do I get through it? I don't know. I really don't know. I just endure it. I distract myself as far as I can by reading if I feel able to. I always make myself get up and get dress' have a shower and get dressed because I feel that if I don't do that I'm just going to slip off the shelf basically. 

So I will pace myself so that I will perhaps get up, have a cup of tea, go and lie down a bit, read the paper, perhaps get up and have some breakfast if I feel I'm able to eat, lie down again, perhaps at an hour a time. When I feel strong enough I will struggle to go and have a shower and get dressed in some way so I feel like I'm sort of part of the human race. 

I feel if I don't do that I'm, I don't know in a strange way I feel like I've let myself down. I feel that you've got to struggle to put on an appearance I suppose that is what it boils down to. You've got your clothes on, you've brushed your hair or whatever. 

But it is often very, is a huge struggle just to have a shower, I mean it's a question really of lying down, waiting for the pain medication to kick in, if it allows me to sort of feel I can move around at all within the house, I will do so or I'll go and walk in the garden if I feel I'm up to it. 

On the really bad days, I just live from one dose of medication to the next and I discipline myself not to abuse the medication and to have them at the right intervals, so that I don't end up with overdose problems or sort of side effects which makes the situation worse.

Feels that having back surgery was the worst possible decision for her and advises others to...

That decision which I made back in 1981 was the worst possible decision I could have made, I was referred by my GP to an orthopaedic surgeon and because he told me that he thought there was very high success rate for a laminectomy I didn't question him sufficiently. 

I didn't have either the confidence or really the medical knowledge to and I relied on my GP to have sent me to what he thought to be the most appropriate specialist. I now know that to have a good chance of having back surgery you must go to a specialist spinal surgeon and preferably in the specialist spinal unit but those are in very, very short supply.

I blame myself terribly that I didn't make those enquiries, I suppose I shouldn't blame myself but if I could change one thing in my life, if I could go back and rewind the tape, that is what I would do and anyone who has ever asked me about whether they should consider having spinal surgery I have always said to them 'Please, please educate yourself as to the chances of success, the success rate with the surgeon who will be operating on you, ask the awkward questions and if possible try and avoid spinal surgery'. 

Because I think when I had it done there was a much gun-ho sort of attitude, it's now I think being appreciated that actually the success is much more like 50% and that's on a good day with a good surgeon and that if it can be avoided it should be. I mean obviously there are some conditions, some circumstances where people have bowel or bladder involvement, they have to have surgery but if I could go back and change that decision I would work, have worked far longer with specialist physiotherapists to try and strengthen my back, to try and avoid the surgery if I possibly could.  

I mean I had had physiotherapy, I had had some advice and nothing that had been done had actually helped me to be fair but if I could change things, I would very much have wished that I could have done that and had that sort of input and perhaps even been sent to a specialist rehabilitation unit where there was specialist knowledge, which is quite difficult to access on an outpatient basis but I'm sure it must exist somewhere. I hope, but I regret that decision terribly and so does my husband. You can't go back.

Was concerned that she didn't explain enough to her children but on the positive side they are...

I think one of the things perhaps is the effects on children of people in chronic pain. I can only go by my own experience but I think one of my major concerns when the children were little, as I say they were six and eight when this first started and I was having lots of surgery and hospital admissions and all sorts of frightening things. 

I became their unreliable mother and certainly not a normal mother in that I couldn't go to school events, take them to school that sort of thing. I think our priority was to keep things as stable and hopefully unfrightening for the children as possible and as secure as possible. And I think perhaps that's something we worked hardest at because we were determined it would affect them as little as possible. 

Obviously there were things which I couldn't do or my husband had to do alone with them, but I think for a lot of people there could be more help. I know there are some books now talking about chronic illnesses and bringing up a family and the difficulties in the way that issues can be handled but looking back I didn't do enough explaining to my children. 

I don't think they suffered but I'm sure they were frightened at times and because I was so determined not to go to pieces in front of them. I had my own emotions under such a strong leash that maybe it made it harder for me to try and talk to them about what was happening to me and maybe it would have been helpful if there had been all sorts of books or somebody else, we didn't have grandparents available who could perhaps have done that sort of thing and explained to them but I think, I think it's hard for children. 

On the other hand, I do think that if they had grown up in that sort of situation, they are perhaps more compassionate and understanding of people who have disabilities or problems of one sort or another and aren't afraid of them that they will go and talk to people, you know they don't ignore people who perhaps are in a wheelchair or something like that. 

But I think that maybe it's something which isn't covered enough in the in the services that are offered to chronic pain patients and maybe there should be more research and help done to alert people to the possibility and the problems in the first place and then help to teach them strategies and think ahead of issues which may arise which may cause problems for their children. You never feel that you've been a good enough parent but you can obviously can think of things you've done better.

Took to carrying a camping mat on long journeys so she could lie down when she needed to.

And make provision for eventualities, I always had to know that I could lie down somewhere if I needed to. I started carrying a camping mat round with me. 

If we were going on a journey we knew we'd have to break the journey so that I could lie down whenever I needed to and I think by then the children were old enough to feel rather embarrassed by having a mother who was sort lying on the ground, but they put up with it, but I think a lot of other people gave us some very strange looks, particularly places like motorway service stations where I would be lying on the grass and it might even be raining gently but I needed to lie down and it didn't matter if I got wet. So we managed so we sort of picked up our lives as best we could.

Was referred to a psychiatrist and felt disbelieved but now realises that counselling can help.

When you are referred to a psychiatrist for a physical problem it is very upsetting and distressing basically. Because you feel that your credibility is being questioned. Now I know that a referral like that may be made in very good faith and with your best interests at heart, but I think it needs to be done in a very sensitive way and this wasn't done for me. 

I was given that referral basically as a punishment rather than an aid. And I know people with chronic pain almost inevitably become depressed and anxious and angry, I would think that you would always be abnormal not to become depressed if you have chronic pain for any length of time. 

So you're very vulnerable to any sort of implication that you may have a psychiatric or psychological problem rather than a pain problem. And it wasn't explained to me at the time that actually the two probably go hand in hand and it is often said about chronic pain that the strain in pain lies mainly in the brain, because you experience pain through your brain, it is an emotional experience as well as a physical experience. 

But my referral was done in a very heavy handed way and I felt very angry and anxious and very defensive because I felt that primarily I had a physical problem why was I being treated like this, so I think if people are going to have those sort of referrals and they may be very suitable for them and appropriate. 

A great deal of time needs to be spent by the referring health professional to explain to chronic pain patients that depression, anxiety are very much part of this syndrome and that they haven't failed in any way, that they are not disbelieved in any way, that it is felt that this is part of the treatment in a very genuine way.

Felt that doctors saw her as a 'heart sink' patient but got involved with a support group and...

So basically we were thrown back onto our own resources without any real medical support and by this time I had a frighteningly thick medical file and I could see the doctors sought of quailing as I approached. 

I was sort of the classic heart sink patient unfortunately, and this went on for a number of years but the only good thing that happened was I began to try to find out for myself what had gone so horribly wrong and why I was still in pain. Now this was well before the internet and it was quite difficult to get access to medical journals and the sort of information I wanted. 

But I was very fortunate because a local self help group for people in chronic pain was set up locally by a nurse who had actually also damaged her back very badly lifting a corpse while she was on duty and she had not been able to get any help either and had ended up going to the [name of hospital] which at that stage, had I think, had the one and only chronic pain management programme in the country. It was sort of imported from America and she had found it so helpful that when she came home her home near me, she decided to set up a self help group to try and pass on the sort of strategies that she had been taught.  

So I got involved with that and it was such a huge relief to find other people with chronic pain problems, we all had different stories and we all had different conditions, although the majority were back or neck related problems but other people with facial pain, or phantom limb pain or arthritis pain from MS, all those sort of things and we formed a very supportive group which I found enormously helpful because at last I could talk to people who understood where I was coming from.

Explains that people need to recognise that pain is physical and emotional.

My key bit of advice. I think it is important that you recognise as early as possible that pain is both physical and emotional and that there will be almost inevitably depression, anxiety, stress generally and that they shouldn't blame themselves. The problem is that sort of chronic pain creeps up on you, what point does acute pain become chronic pain it is a continuum there is not any sort of time that you can identify. 

But I think the sooner that people are informed about what is happening to them and they can access information that will help them to understand the situation the better.