I was wondering what advice do you have for someone doing the same thing?
That it’s really a good idea to do and to try and get as much information as you can, but to be careful because some of it comes from suspicious sources like private hospitals and private doctors who are obviously just trying to make some money, and I’ve never actually found anything that I can say is bad advice or whatever but I’m just suspicious that it’s not all very accurate information.

But that yeah, you can, I’ve found it really helpful to get more information on the internet and I think doctors are kind of getting more and more used to the fact that their patients will know more about their own condition and a lot of them welcome you coming up with ideas. I mean I’ve had doctors say to me ‘What do you think’s wrong with you. Have you managed to find anything on the internet that you think it could be?’ And I think that’s good, you know, that they let you have your input.

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.

And I think from then onwards getting taught different things, like I got put on pain management courses and how to cope, just how to cope with your pain, and I found that very, very helpful. It didn’t take your pain away but it gave you better insight on how to cope with the pain.

Again it took me quite a long while to get rid of the depression but that lifted and I started to take part in different things in the association. Topics and anything at all they came up with, I always took part in these things. And I wasn’t one for, I’m talking about even before my accident I actually wasn’t that type of person who would actually get up in a meeting with a group of people and speak.

In fact I wouldn’t even speak on the phone, but then when I started going to the pain association I began to get more confident. I then started to speak at meetings and then gradually I began to actually pick up the phone, answer the phone and also just sort of phone other people which was to me a great thing on its own, because I never, never phoned, I never actually picked the phone up I wouldn’t speak to anyone on the phone.

So from that day onwards I thought well there must be an alternative to this and I started to do something that I had never done in my life was read books, I started to try to read books. It was hard because of my concentration, because I could go over the one page maybe once or twice until it sunk in but it still I just kept at it.

You said that before you actually got the diagnosis you’d actually tried to look up on the internet. Did you have much luck with that?

Well not really. The nearest I got to it was ME and the Gulf War Syndrome which apparently is very similar but I wasn’t in the Gulf so it couldn’t be anything, couldn’t possibly be anything like that but the symptoms were very similar. The ME and the Gulf War because with ME you do get an element of muscle pain but not to the same extent.

How did you go about looking up the information?
I just typed things in, you know search strings and what not. You know I went into a couple of medical sites and just kind of carried on from there. It was very haphazard. I mean there wasn’t anything organised about it at all, you know. I think I started off with chronic muscle pain and then I added in a few things and then I sort of came up with the ME and then it had other things as I say the Gulf War Syndrome and there was other things mentioned I think at the time.

Lupus was it? Sjrgen’s Syndrome or something like that. All that have got kind of elements in it, but not quite what I was looking for and as I said I sort of bumped into this friend of a friend and that’s how I, and when she told me I did look it up on the internet then and I was absolutely amazed because everything that I read it didn’t matter what site I went into what description, it was all more of less similar and it was all exactly the way I was feeling and in a sense it was a relief that it had a name that there was something there.

I wasn’t just imagining it but since then as I said through the Fibromyalgia magazine and various people that have got Fibromyalgia that are keeping in contact with now through email it’s just amazing how they had a lot of problems as well. In fact one woman actually changed her GP seven times over a period of 10 years before she got a diagnosis.

So it’s actually a release to know, it’s got a label, you can’t actually do anything about it, it can’t be cured but you know there are other people who know what you are talking about which is really helpful. Because I did actually for a period there with the doctor telling me I was going off, you know I was imagining it I did actually think I was going off my head. I thought I was really going crazy.

Theres a lot of issues that come up that you have to deal with, like the fact that I can’t be in paid employment and having to ask all the questions about benefits, having to look at what you can and can’t do, that’s very important to research that to know where you stand and yes you need it explained, you need to go to people, like the you need to go to the Citizens Advise Bureau, to find out what you need to know, to go to people who specialise in each of these different fields, so you’ve got all the knowledge you need to move your life forward.

What other questions were important? I mean questions for me were like what research is going on, is anyone actually doing something about this and it was very important to me to get onto Medline and do my own research studies, get the research papers myself, read them myself, digest it and to try and see what patterns there were, because you’ve got pockets of research in America and Norway, in Europe and in the UK but are they actually linked together.

I suppose I see one of my things that I enjoy doing is writing articles that link all the different research together to try and look for patterns and try and move the research forward, that’s the area that I’m most interested in, is seeing the research move, being able to work with medical professionals and being as treated as one myself having a degree and the knowledge to do it, to actually work as a communication link.

My first introduction to the term, ‘Chronic pain’, came whilst filling time in my GP’s waiting room. I saw its a Scottish research into chronic pain or some letters attached to it and, forgive me for not remembering it but, I did take that home and had a potter about on the internet to do a search against chronic pain, and up this site came again.

I looked through the pages, I think there was about six pages or so, but they covered such topics as the pain clinic, pain and depression other subjects on pain and the management of pain, and I did find, well those two that I remember, most interesting.

The one on the pain clinic is a thirteen page pr’cis, I think eleven pages really because the bibliography takes up the last two, but it was an amalgamation of a lot of research that’s been done from those accredited books, but its something that is very readable and quickly understandable, and extremely relevant.

I could liken myself to a lot of the symptoms that were being expressed in the research, and I thought, why not. Similarly with the pain and depression page, the Amitriptyline was explained as it should have been explained before that, you know, by my GP, and I would say my chemist as well.

I mean, you know when I’ve come, like I say, when I read the Endo’ thing, it made such a difference to hear somebody else and though I don’t want to sit here and be negative and negative and negative because it is awful, you know, I could, that’s too simplistic a language for how awful it is you know to feel as bad as I’ve personally, you know, in my personal experience feel.

But… and you don’t want to, I don’t want to be negative about it because people need to be positive at the same time because otherwise it’s, theres no point. How do you get through tomorrow if you are going to be negative. Even though everything in your life feels negative, not everything but, you know everything feels negative because it’s so hard. You need, their needs without being people who are ill, you know I hate flowery nurses who give me positive rubbish in my fa.., you know, who absolutely know absolutely nothing about how you are feeling and they just try and cheer you up and you, you know, feel absolutely awful and nothing they say is going to make you feel better.

But having information available that of all sorts hits of everything of positive and negative I think reaches a person at the, you know, at the right time, can make a huge difference to them. If they are looking on the internet, you know and they feel particularly positive about something and they read it, and somebody else felt positive about that thing it could be profound.

And the same thing about feeling negative about something to be reassured because somebody else felt negative is as equally profound because it is reassuring that you are not going completely bizarre or potty. I think all of it is really important. Really, really important.

You know and I’m rubbish at using support groups and support mechanisms but I think it works for people, everybody’s different and having all these things available means that it meets somebody’s needs if those needs are being met it’s so important.

When I was in my depressed stage after the surgery when I was on the drugs that didn’t agree with me, I think it was through the American alliance there was an e-mail forum group for people with my condition which seemed like a really good idea at the time but… and I did find in fairness, I did find out some information because you could just put an e-mail message out and everybody got it so you’d get you know, you could get anything from two replies to two thousand relies replies if everybody had an input in to your particular query.

You also got to see other peoples queries and replies to them. So you did pick up a lot of information but there was a lot of just sort of patting on the back trying to lift your ego type stuff but it was all, although it was trying to be uplifting with the whole… they are very into religion and praise be and that kind of thing, which don’t get me wrong I am a Christian but it was always tagged onto the end of this awful story about some poor child who’d had this condition a million times worse than me and you think, it was far from uplifting.

But I did get the information like the drugs that I am now on from somebody in America from the forum so it was useful as well. But once I was in my higher mood after going onto the Neurontin I decided I didn’t need to read two hundred e-mails a day from people who were obviously not very uplifted themselves. So I stopped using the forum.

Well I find the internet’s really good but I think you do have to be very careful. Theres an awful lot of things, I’ve learnt from other people really on some of these good ones, you know, that some of the websites will say that you can do, if you take this pill it will do this, that and the next thing you know. So I think you have to be really, really careful about what, you know, you listen to and what you don’t.

But there are a lot of sites, a mean a few sort of religious, theres a few sites geared along those lines and theres loads of groups out there and loads of information out there but, as long as you’re careful, it’s very easy, especially if you don’t have much knowledge about medical things that you know, I wouldn’t take anybody’s, I wouldn’t listen to what they’re saying without listening to my GP as well, you know, because it could be dangerous I suppose really

The good thing about… the other good thing about the internet is the fact that you meet, and especially for people who are really disabled and can’t get out, is that you can have a circle of friends, you know, and talk to people. I mean, if you have a look into some of these forums sort of things, people are just talking about ordinary, everyday sort of things, like things in their back garden, you know, flowers and stuff and I suppose, for some people, that it opens up a new world to them, you know. I mean, I’m in a lucky position I can still get out and about, you know, it’s…

Have you ever looked up information about pain at all, about back injuries on the internet, say?
Well I did in the early days, but so much of it is American based anyway and a lot of it is sponsored by Drug Companies so I was not that impressed. The thing that I have noticed about pain is no two people have got the same take on it. I mean my pain isn’t the same as somebody elses pain even with a roughly similar injury and I mean pain itself is an intangible, like I can’t remember the last bad day. I mean I can remember the date of the last bad day but I can’t remember what it felt like. If tomorrow is a good day, I won’t remember what today felt like.

I mean you can’t remember pain because if you could women would only ever have one baby. It’s a thing that everybody’s got to deal with as an individual I think, and the same kind of pain means different things to different people and I think I end up dealing with it at the end of the day, it’s 95% at least is going to down to the kind of person you are and the way you would deal with anything else.

I mean I admit initially, I did, in a way let it get on top of me, but that’s a lot to do with refusing to accept how bad things were, but once I did, it makes it so much easier. Don’t get the idea that I like it because I don’t but I am, I don’t have the power to change it, nobody I know does either so I’ve got to deal with it.

So, would you say that it was any of the information you came across’?
No, not really. No. It’s… I am convinced it’s one of those things you can’t really generalise about. I mean if I were to put anything on the internet I would say that pain doesn’t mean the same thing to two different people. And if it is going to be constant in your life, you, the sooner you can (a) come to terms with that and (b) find ways of dealing with it, the happier you are going to be and the quicker you are going to be happier as well.

I mean, initially I didn’t do that good a job but like I say it was tied up with this absolute determination not to accept that things weren’t going to get better because I’ve been in this position before and things have got better but not from this injury they’re not.