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Chronic Pain

Support groups for chronic pain

There are a number of local and national support groups and organisations which provide support for people living with chronic pain. Some are for specific conditions while others are for all types of chronic pain. For more information about organisations see the 'Resources' section of this site.

Many of the people that we talked to had joined a support group. Some people's GPs or consultants had advised them about a local group or one specific to their condition. Others found out about groups from the local radio, an NHS Pain Management Programme or clinic, or by looking online or in a local telephone directory.

A woman with Fibromyalgia described how her consultant gave her a website address and through that she found the Fibromyalgia Association, which had been a good source of information and support. One man recalls how he had heard about a new pain support group in his area on the radio. Initially he was unsure whether it was for him but when he went along he was relieved to find that he was not the only person with pain.

 

Her consultant gave her an internet address and through that she found the Fibromyalgia Association.

Her consultant gave her an internet address and through that she found the Fibromyalgia Association.

Age at interview: 47
Sex: Female
Age at diagnosis: 46
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You said that, when you finally got your diagnosis, was that from the consultant at the hospital?

Yeah.

And, and did he give you some information then?

Very little. Gave me a bit of information about it and told me where, well he asked me if I was on the Internet and he gave me an Internet site where I could find some which was quite useful and from that, that was where I found the Fibromyalgia Association and I wrote to them and became a member and started getting the monthly magazine. 

So... but I wouldn't say he bombarded me with information. The main thing sticks in my head was there is no cure. That's what he told me. There's nothing much the NHS can do for it and there is no cure. So in itself I'd got a diagnosis but it wasn't really all that helpful. So... but I've found most of the information really I have found out myself through talking to other people and through that magazine and various things like that. 

It's through the magazine actually, they asked at the end of last year the people would write in with their own particular story and they publish one every month and so I, it was one of the days I was feeling sort of sorry for myself so I wrote a couple of pages and I attached a digital photograph, sent it off and they published it in the magazine in April and through that I've had well I got tons of emails. 

I got 30 or something from different people all over the country but since then I actually keep in touch with 4 different women from Bristol and various places like that and we've kind of kept up the email chat. You know it's got to sort of general chit chat now as well as the Fibromyalgia symptoms as well but it's quite good that you know that somebody else knows what you're talking about. Because there isn't actually, there are various support groups round the country, but I think my nearest one here is actually Dundee which isn't much good for me really.

 

Went along to a support group after hearing about it on the radio. Was relieved to discover other...

Went along to a support group after hearing about it on the radio. Was relieved to discover other...

Age at interview: 56
Sex: Male
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It was basically just by chance I was driving my car one day and I heard on the radio that there was a pain meeting at [name of home town] central that for some reason I said I think I'll just go and see what this pain meeting is all about because I'm, I didn't know what to expect on it and I didn't think it was for me you know, but again it can't be doing me any harm, it's a voluntary thing you don't need to go back. 

I came home had my tea that day and went to tell my family that I was going to this pain meeting, 'What's the pain meeting'. I said 'Well I don't know' I said 'but its people that suffer chronic pain and I said I might as well give it a try' so hence I went along, I was quite surprised there was about 22 people there, which was a big surprise to me because at that particular time I thought I was the only person in pain, I suppose its quite nice to see that other people were suffering pain and I mean that in the sort of nicest way.

The internet was a popular source of support as well as information (see also 'Finding information'). It also brought support to people in their own homes through e-mail, chat lines and forums. Although this type of support was generally seen as good, some people warned against getting dragged into other people's problems or receiving incorrect advice.

 

She mainly accessed support groups on internet for information and did not want to dwell on the...

She mainly accessed support groups on internet for information and did not want to dwell on the...

Age at interview: 24
Sex: Male
Age at diagnosis: 18
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I think the biggest reason I've had to access support groups is to actually get more information. It's not something that I've found particularly relevant to the way that I manage my illness, but it's something I did look to, particularly when I was first diagnosed, for strategies and for actually some physical contact with other people that have been through the same thing as me. 

I actually found, after a month or so of being in contact with a couple of different support groups to get a few ideas, that it wasn't something that was going to work for me as a person. 

Because I am quite proactive and positive, I don't want to really dwell on the bad things and I found, in some cases, certainly not in all, but in some cases, the support group seems to be about sharing the bad things rather than sharing strategies and good aspects of management of the pain. 

So it's something I then decided I would use, take what I wanted in terms of information, but not really give too much of myself to them, because that wasn't the kind of solution that I was looking for.

Most of the support that I've accessed is through the Internet, purely because physical reasons, because when I was actually accessing the support groups I wasn't physically able to leave the house, so I had to use the Internet and I think maybe that did affect the opinion that I've formed of them.
 

Finds internet support networks good but stresses that you have to be careful what advice you...

Finds internet support networks good but stresses that you have to be careful what advice you...

Age at interview: 49
Sex: Female
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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... 

People who had joined a support group often felt that the greatest benefit was the mutual understanding of what it is like to live with chronic pain.

 

Talks about how other people in support groups know what you are going through because they also...

Talks about how other people in support groups know what you are going through because they also...

Age at interview: 56
Sex: Female
Age at diagnosis: 36
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What's so helpful about meeting other people through a support group?

When you meet people through a support group you know that they're going through a lot of pain, I can't feel their pain and they can't feel my pain, but even being able to talk to like-minded people is good because at least you know they've got an idea of what you're going through. 

Whereas pain can never really be described, its either unbearable or its bearable, but to actually describe the pain is a very hard thing to do and if I had a penny for every time that I've ever said, 'If somebody could just crawl into my skin for 2 minutes.' I wouldn't need to explain pain, and basically that's what it is, and when you meet other people that are going through a lot of pain, the fact that you do know what they're going through because you've been going through more or less the same. 

Maybe not joint pains, it maybe different pain from you, but the fact that you have in common is pain, and its doesn't need to be depressing about 'oh how sore I've been this week', you know, it can be actually quite uplifting, because sometimes you always see somebody that's been worse than yourself and it makes you say to yourself, 'Right come on give yourself a shake, get on with it, just go an extra swim this week and you'll not feel so bad at the end of the week.'

Despite this, people were keen to emphasise that it was not all about complaining and groups often involved a lot of laughter. A woman emphasised the importance for people's' partners of meeting and sharing experiences of living with somebody with pain. Others appreciated being able to pick up the phone and talk to somebody who understood what it is like to have a bad day with pain.

 

Advises people and their partners to join a support group to meet other people with pain.

Advises people and their partners to join a support group to meet other people with pain.

Age at interview: 47
Sex: Female
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Join a support group so that you are with people in the same situation as you. People that don't have to ask if you're all right, people know that you're not all right. And none of us want sympathy, sympathy's the worse thing. Sympathy makes, if anything's going to make you cry, someone being sympathetic will make you cry, it's better if they're a bit harder. 

But to try and be with people in the same situation as you helps and to also, I think, let partners, husbands, wives, partners, whatever try and mix with other husbands, wives, partners at support groups, social evenings, whatever so that they know they're not on their own, because they feel very, very isolated as well and that's another thing.  

I mean I don't think we think enough about our carers, because it's as bad for them as it is for us and I really believe that, you know. They obviously haven't got the pain but they've got the consequences of everyday life and not enough is given to them really.

Support groups and organisations were also good for learning about different ways of coping with pain. Some had regular speakers, features on coping with pain or information about online resources. A few also had special courses on living with chronic pain.

Several people we talked to had become involved with pain related organisations as group facilitators, local telephone contacts or in setting up support groups or national charities, and a few people were in paid employment for pain charities.

This type of work was often seen as therapeutic and helped people to make something positive out of their experiences. One woman described how her involvement as a local contact for the charity Back Care has been a good thing that has come out of her pain problem.

 

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

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

Age at interview: 32
Sex: Female
Age at diagnosis: 26
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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.

Some people thought that they weren't a 'support group type of person', but were happy and surprised to find out that other members had had similar experiences to them.

 

Recalls finding mainly women at the support group but eventually talked to others and found that...

Recalls finding mainly women at the support group but eventually talked to others and found that...

Age at interview: 57
Sex: Male
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I went to the Pain Association, when I first walked into the meeting it was just all women and it was a shock to my system, 'I'm not sitting here with all these women'. But no, once the meeting started and they started speaking about their pain because they spend one hour on different topics, like how to relax, just relaxation techniques, they have got different things about how to move on after your pain and after your accident. 

And I was just sitting taking things on board. And then it was that night that this other gentleman came in, and once he came in I began to relax a little bit more. But I didn't speak that night at the meeting, in fact I don't think I spoke in the meeting for about 3 or 4 meetings. And it was after that, I begun to pick up confidence and actually talk to different people about my symptoms and they were saying 'Well that is what I had, I had this, I had that'. 

And the thing about it is each person helps you through all these different parts and its good to have somebody that can actually, that's went through it all and knows just what they're talking about and also the beauty of it is that you could just sort of relate to that and it helped you it helped you to know that it just wasn't all in your head, it just wasn't you imagining it.

Others do not want to join a support group either because they felt they had a supportive network of friends and family or because they didn't want to dwell on their problems. Some felt that at this time they didn't need support but might do in the future.

Getting to a support group was a problem for a few people either because they did not have transport or because they were working and the times were not convenient. One woman suggested that support group meeting at lunchtime might be better.

Last reviewed August 2018.

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