Interview CP12

Age at interview: 47

Age at diagnosis: 46

Brief Outline: Multiple tests all negative. Diagnosed with Fibromyalgia, 2002. Pain management: Pain Association Scotland Living with Pain course. Current Medication: Occasionally uses co-codamol.

Background: Secretary; married.

Learnt to manage her pain by going on a self-management programme run by the support group Pain...

You mentioned that you'd joined the Pain Association and was that through your GP?

It was my lady GP mentioned it to me I think she was looking for the leaflet but she couldn't find any. So what she did was to give me the phone number and said that the Pain Association had actually been to the surgery and delivered you know what the actual Pain Association was about and what they do. 

So it was her that suggested a try-out. I said 'Is it not for things like cancer pain and that, you know, real'. 'No, no, no' she says 'It's for all sorts of types of pain.' So I got in touch with them just before Christmas it was last year and I joined and I got offered a place on the course and that was February or March, April because it ran for 7, one day a week for 7 weeks and I did learn quite a lot from it. I must admit. There was a lot of things said in it that I'd never really given much thought because sometimes simple things that'

Tell me about what you learnt?

Things like pacing, things like, well the relaxation tapes I was aware of anyway but making affirmations. 

Can you explain a bit more?

Well, just sort of thinking about you know if you are feeling very hot, if the pain feels really hot, sort of closing your eyes and thinking about something nice and you know like a nice cool blue veil just sort of slipping over you to kind of help to ease the pain or sort of seeing yourself in a room, in a nice comfy chair and just sort of floating there and this lovely veil of relaxation and comfort just kind of slipping over you. 

Just things like that really. It's quite difficult to explain. Well I'm not very good at explaining it but things like that, that I never really thought of before, but the pacing was a good thing, you know about how you can pace your day. And something else that we've spoken about like a cup being half full and half empty, you know if you're feeling pain and what not, you know that's taking things out your cup, what can you do to help put things back in your cup to fill it up again, things that relax you, that comfort you, that may make you happy, just things like that really. 

Just small things that you maybe never give a thought to but can make a difference and that's obviously the social thing about, meeting other people with different kinds of pain and just seeing what they go through and how they cope with it as well, it's quite amazing really. 

Just as I say how things like that can help not take it away but they do help but it's like everything else you know you have to kind of practice using the relaxation tapes and you've just got to kind of practice the pacing. You've got to know when to stop when you're doing too much. When to rest and the affirmations it's sometimes difficult to concentrate but it can happen, you know. 

Feels it is important to prioritise important jobs and accept that it is not the end of the world...

Well, I think one of the main aspects of pacing is realising to stop doing something that you're doing before your pain really kicks in, you know maybe if you've got, say, four or five things that have to be done. Put them into sort of order of importance, you know. Really have to do that, that doesn't matter so much, you know at the very end and then maybe spend 10/15 minutes on doing something, have a break for about 5 minutes or something by either doing something else, especially if something you're doing was repetitive and you maybe just moving your hand all the time or something like that, like cleaning windows or ironing, you know the woman said at the course that I went on. 

So before you feel it really kicking in, stop and you know, have a rest, do your like deep breathing exercises or stretches, you know exercise, just stretches, even sitting in a chair can help and then maybe move on and you know, try and get it into your mind that the world's not going to come to an end if X, Y, Z doesn't get done and move onto something else and just kind of take it from there. 

It's getting to recognise before the actual pain kicks in and gets worse. It's difficult to recognise it if you have been so used to going about just doing things you know and then you go onto something else. Some people don't realise just how exhausted they actually are and if you're in any kind of pain obviously it makes it a lot worse. It's just recognising it and stopping it before you make it worse you know, because that can make the rest of your day worse and the following day as well. 

Whereas if you learn to pace yourself you're maybe not so as exhausted and sore at the end of the day and the next day you're kind of starting from the same level rather than 'Oh I feel even worse than yesterday'. It takes, it takes a while to kind of get your head around it though but it can be helpful. I don't always remember, I must admit but I do sort of, I'm more aware of it now than I was before I went to the Pain Association thing because I just wasn't aware of anything like that before.

Feels nutritional supplements are expensive and probably unnecessary if your diet is balanced

I've tried various complementary therapies over the last few years, I've tried the, well I read up, I got a book written by a nutritionist and I read up on all the various vitamins, minerals, amino acids, and everything a body should be taking, you know I've tried out various vitamins, changed my diet, not 100% but I've changed a good 75% of my diet in that I don't really drink tea, coffee, don't eat white bread, tend to eat more brown bread. 

I eat my five portions of fruit and veg every day. I eat oily fish, don't like it but I eat it, I eat, I try to sort of eat all the things that are good for you that are healthy. I've tried various different kinds of vitamins, minerals, amino acids, and usually for a period of two or three months at a time, but to be perfectly honest with you I don't really feel an awful lot of difference with the vitamins and things like that. I think that if you're eating relatively well the things you should be eating it more or less balances things out for you. 

Has tried numerous complementary approaches, with varying success, but is still open to ideas....

Aromatherapy massage, yes, I love it and I'd love to go every week, twice a week but I just can't do it. It's too pricey. It's '30 to '35 for an hour's full massage. There's no point in just going for a leg massage or a neck and shoulder massage when you've got Fibromyalgia because it affects more or less all your body. 

So yes I'd love to see something like that, that you can go to your GP's surgery and get at least once a week but it's pricey. If you can afford it, do it, because it is wonderful. It's something I would do on a regular basis if I could afford it but it's just not affordable and I go as and when I can. 

I've tried chi-hatsui which made my muscles even more painful. I've tried Reiki, 3 sessions of that and I didn't feel I was getting anywhere. At '40 a session it's a lot of money, I think. Some of the alternative therapies, while I think they could be quite good, some of them can take a wee while to work and you really need to have a fair amount of money that you want to spend because they are not cheap. 

I consulted a herbalist who made up a potion for me. '35 consultation fee for an hour. Very good, took all my medical history and various things like that. Made up a potion for me which cost about '18 I think which lasts for 3 weeks. After 3 weeks you go back for a follow up consultation that was '20 and then you had your potion again which was changed slightly I think the second and third time, again you had that to pay for so it works out quite pricey and to be honest I didn't, well I probably slightly alleviated my symptoms, it didn't feel worth what I was paying for.

I also tried Chinese herbal medicine. Spent about '300 on that and again I don't feel, I really, slight, very, very slight improvement but not what I would say was really worth paying for. A couple of things that I haven't tried. I've tried things that you can buy out of homeopathic chemists, but I haven't actually spoken to a registered qualified homeopathic person to get any of their remedies. I have heard they can be helpful and then I've heard from other people they're not. I suppose it maybe something to think about for the future. 

And then I've also heard as well you can actually get a referral to a homeopathic doctor on the NHS. I haven't actually queried that with my own GP yet but I've heard it can be done. And I think the other thing which can be quite helpful and that's another thing I'm going to ask my GP about, acupuncture I believe can. But it has to be not something you go for just once or twice like you maybe would with sciatica and things like that. It's something you've got to sort of get on a regular basis so again unless you could afford to pay privately you'd hope you'd maybe get something on the NHS. 

What other alternative therapies have I tried? I think that probably rounds it up but there's quite a few there that I have had tried. If you find something and it works and you can find the money to pay for it then you know, stick with it, but anybody can set themselves up as doing alternative therapies so be careful about who you consult. Take recommendations and etc. etc., I think from other people is probably the key because there's so many of them about now. 

But I would be quite happy to pay for, I'd be quite happy to find the money and pay for some kind of alternative therapy if I knew I was going to get more out of it than anything else but so far, no, I haven't actually found that. Me, personally, I haven't whether other people have I don't know, but I certainly haven't to any degree which is unfortunate but at least I have tried. I'm open to ideas.

The more she read about her condition the more she realised that it wasn't the worst thing in the...

But no, it took me... I was quite, I wouldn't say depressed but I was quite despairing I think for a while, thinking I don't know if I can face this for the rest of my life feeling like this, day after day after day, week after week, month after month. And the more I read about it and the more information I got about it, I just, something just finally realised in my brain 'Well, it's not the worst thing in the world'. It's bad but it's not the worst thing in the world. 

I can manage it to a degree, once you get all the information about it. There are days where it is pretty hard to handle but there are other days where you can manage. I mean the pain's still there but it's manageable and I try now not to really think about how I'll feel tomorrow or I won't go there next week just in case I've got too much pain. I just try and kind of manage every day as it comes. It's the only thing you can really do or you would go mad.  

Changed to a lower grade but less stressful job but feels it is important to keep working because...

I'm quite lucky really because I've got a rela', well I did have another job a few years ago which well I work with the Council so it's the same organisation but it was a higher grade and more money but I was just feeling so lousy I thought well I'll either have to change my job and do something else or give up work altogether. So this other job came up, it's a lower grade less money, but there's not really much in the way of hassle with it. 

What keeps you working?

Well I think the main thing is I feel myself I'd probably get a bit, I've worked since I was, left college when I was 17. I've worked full-time all the years, never been out of work it's a way of life. I wouldn't know, I don't know anything else. There's that. 

There's the thing I'm finding when at home all weekends or holidays because I've got things to catch up with and things that I do that I don't have the time to do during the week when I'm working, so that kind of fills my time. But I think if I wasn't to work at all. I'd probably get quite lethargic and probably end up lazing about not really doing very much because I'd have no motivation to do anything and of course the financial aspect as well. 

As I've said, I've always worked. I've always had a wage or a salary coming in and I think that gives you your independence as well as anything else. But I think the main thing for me is, well I like, I like to have some kind of routine in my life and I think that, I think working, whether it be this job or maybe doing another job, if that sort of takes care of that aspect for myself.

Her initial internet searches were unsuccessful but once she knew what to look for she was amazed...

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. 

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

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.