Most of the people we talked to had looked for information about such topics as causes, treatments, how to live with chronic pain, advice about medications, side effects and withdrawal, or even how to make sense of the terms their doctors used.
Sometimes health professionals had pointed them to useful resources, while others had learnt a lot by joining support groups, calling telephone helplines or searching on the internet.
Although some doctors were interested, helpful and receptive to ideas that patients have found in newsletters, or online, others were criticised for not seeming to understand or be able to explain about chronic pain.
- Age at interview:
- Research student; single.
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.
Some people with chronic pain suspect that doctors see them as 'heart sink' patients, for whom little can be done. A feeling that they had been 'abandoned' prompted some to find out what they could do for themselves.
- Age at interview:
- Retired careers officer; married; 2 children.
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.
One man described how his pain had encouraged him to start to read books - which was a new experience for him. Others subscribed to newsletters or had found interesting programmes on the television. Many of the people we talked to had searched the Internet, although in some cases they hadn't found anything at first.
- Age at interview:
- Medically retired maintenance plumber; married; 2 children.
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.
- Age at interview:
- Age at diagnosis:
- Secretary; married.
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? Sj'rgen'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.
People often used the internet to look for medical facts and information about other people's experiences. The internet could be useful when making decisions about surgery and to make sense of what the doctor said, when finding out about recovery, when financial and benefits advice was needed and to do their own research into their condition.
- Age at interview:
- Secretary; widowed; 2 children.
You said earlier that you wanted some more information about what the shoulder operation would involve?
Can you tell me how you've tried to get the information?
I've put a couple of messages on different websites. I can't remember which ones, for anyone who's had one because it would be nice to get you know a kind of first hand opinion of what it's really like and especially as I live on my own it's quite worrying because I don't know quite what I will be able to do and what I won't be able to do.
I've asked around different friends, you know if they know of anyone but no one. It seems as though it's never happened to anyone before. Although I know they've been doing shoulder replacements for a long time.
Has the surgeon talked to you about the success rate of your operation?
Not really no. Again you know perhaps I have not asked the right questions. Last time I was more ready to ask the questions and he was obviously very short of time. But no, I think really we could do with when you are going to have an operation you know and you are on the waiting list or even before you are on the waiting list there ought to be some leaflets to give you some idea what is going to happen to you, that, that you didn't ought to have to ask for.
I'm not very good at asking, asking for things I think and also you know when you are in the, I guess I was brought up in an age when doctors were just nearly God and you didn't ask these questions and' I'm a bit better now but I'm still finding, I still find it quite hard when I'm in their presence I suppose. But I think as a matter form there ought to be leaflets about these conditions that were given especially when you were on the waiting list.
- Age at interview:
- Scientist; single; 1 child.
There are things like I think Back Pain Association and now, with the age of the internet, there's so many things that you can find. So find out as much as you can about you're pain and why it's there and, through understanding, might come acceptance that whilst it's there but you understand why and, therefore, you may be in a better position to deal with it.
Is the internet something that you've used yourself?
Oh yes, but then I have access to it very easily. I use the internet a lot. I've got a computer at work. I actually found my operation on the internet. I got more information from the internet than I did from my GP, from my surgeon.
I mean I knew exactly the procedure I was going in for, I knew why they were doing what they were doing and, when I didn't have the expected result after surgery, I was in fact able to go onto the internet and find out why that might be the case. And then, when I went to the doctors, went back to the hospital, I was able to ask quite probing questions.
But sadly I think the more you ask the more you realise that there isn't always an answer and that can be quite difficult because you think, in this day and age of technology, that there will be an answer, there must be an answer, but there isn't always and that's difficult.
So yeah, I find the internet incredibly, incredibly helpful. I think for people who perhaps don't have background in biology or, you know, they don't understand, they've not been trained in these areas, there's a lot of help on the internet in very plain language that people would understand and it is an eye opener.
And I think when you're informed and you go to speak, especially for example if you're trying to determine whether you should go for surgery or not, the more informed you are, the more you can ask of your surgeon and the more, I think perhaps you will feel easier with any decision that you make because it's an informed choice.
So I find the internet very helpful and I think anyone can go on the internet and find it helpful and that might even be something that, I know for example when I asked my GP he gave me a disc, a CD away with me and basically that was a list of all they, you know, support groups that were available.
So yeah, I think it would be good to have access. I think you'll probably get a lot more information from that than you will from a five minute chat with your GP and even a 20 minute consultation with your surgeon or your consultant and I think you can ask more questions and get more answers if you do.
- Age at interview:
- Age at diagnosis:
- Not working/voluntary work for Fibromyalgia Association; single.
There's 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.
One man used the internet to find out what the term 'chronic pain' meant and a woman pointed out how important it was to hear about the negative as well as the positive onlne.
- Age at interview:
- Police officer; married; 4 children.
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.
- Age at interview:
- Unemployed administrator; single (long-term partner); 1 child.
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, there's 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.
Chat rooms and forums were also widely used for support (see also 'Support groups'). One woman discussed the pros and cons of the forum approach, which had been useful to her at some stages but not others.
- Age at interview:
- Age at diagnosis:
- Part time teaching assitant (trained as programmer); married.
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.
Although the internet was highly valued, some were concerned that they might get incorrect advice. One man who'd looked for information online concluded that it was dominated by drug companies, which he did not trust, and American experiences, which he did not find relevant.
- Age at interview:
- Nurse (not working), voluntary work; married; 2 children.
Well I find the internet's really good but I think you do have to be very careful. There's 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, there's a few sites geared along those lines and there's 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...
Some (including a couple of regular internet users) were surprised to hear that there might be information about chronic pain onlinet. One thought it was too “amorphous” a category to be easily searchable on the internet.
A few people said that they had never looked for information about chronic pain. Reasons included preferring to do what the doctors said and a belief that everyone's pain is too different and individual for general information to be of any use.
- Age at interview:
- Medically retired horse breaker; divorced; 3 children.
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 else's 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.
Since 2007 there has been a rapid growth in smartphone usage and development of smartphone applications ‘apps’ some of which are aimed at people with pain. There is currently very little regulation of health-related apps and the amount of health care provider (HCP) input can vary considerable with some having no HCP input at all. Most of the apps for pain management do no more than prompt the user for reports of pain, medication, mood, activity, etc. and then provide a graph of the information. Which some people may or may not find helpful, but experts worry that:
“In a population often desperate for a solution to distressing and debilitating pain conditions, there is considerable risk of individuals being misled.”*
None of the people we interviewed had used smartphone apps for pain management.
* Rosser BA, Eccleston C. Smartphone applications for pain management. J Telemed Telecare 2011;17:308–12.
Last reviewed May 2015.
Last updated May 2015.