Interview CP04

Age at interview: 50

Age at diagnosis: 45

Brief Outline: Multiple tests all negative. Diagnosed with Fibromyalgia. Treatment: Physiotherapy Pain management: Pain Association Scotland Living with Pain course. Current medication: amitriptyline, quinine sulphate, diclofenac sodium (Arthrotec), co-codamol (Kapake), omeprazole (Losec).

Background: Medically retired care officer; married; 3 children.

A Dosett box, refilled weekly, helps her remember her medication.

I'm on two anti-inflamatories a day, I'm on one capsule for my stomach, I'm on one tablet for, I've got a jumpy leg that seems to go for a wee holiday itself, it doesn't want to take the rest of you with it. So you go to end up I had to buy a weekly box so that I could sit on a Sunday or a Saturday and fill this box up with tablets I was supposed to take every day. 

So it means, I do it on a Saturday, so I start on the Sunday, in 4 compartments, so you can actually, when you walk in you say 'I've took my tablets its alright'. 

Because pain does tend to do something with your memory as well, and its not only the pain, I think its everything else that goes with it, so a weekly box was ideal for me because I've done it once on a Saturday and I don't have to worry about taking my tablets all week, because I knew where they were, I went I got them, if I hadn't taken them I would look in the box and say 'I've forgot my tablets', but its very seldom you forget your tablets because sometimes you're sitting there going, 'I've got another 2 hours to go before I can take my painkillers', do you know what I mean?

And sometimes that can be hard, or you can take an extra two, an extra two painkillers but even at that it doesn't help very much either, so when you're in a bad flare-up you can have a mope about the house and stay out everybody's road and cry your heart out and you get over it, its as simple as that, you do, you eventually say to yourself it's a bad day, it'll not kill me so I'm alright.

Had been frightened of exercise and even movement but had been told by professionals and support...

When I first had the pain I did, I drew back from everything, I wasn't going for walks, I wasn't doing anything, I was feared to lift a teapot, feared to do anything because it was hurting my pain. But when I went to the Pain Association and things like that and doctors appointments and hospital appointments, everybody's said the same thing, 'You should try and do some gentle exercise'. 

Now gentle exercise means like, you could even do the Mexican wave, that's a gentle exercise, you can do it with one hand, as long as you're moving, its an exercise. 

So when, when you've been in chronic pain for so long and you do tend to, you don't try and do it all in the one day, that would kill you. So yes, you might be apprehensive about doing exercising, but its not the exercising that you think its going to be. Its... You're not going to row down the Clyde, you're not going to run a marathon, all you're going to do is gentle exercise that won't aggravate your pain, but it could help and yes I did.  

I still don't do an awful lot of exercising but I do exercises. It's what we call a gentle movement, because it really is just gentle movement, and it's a case of the better you can be at you're gentle movement the better it gets. But you don't rush into it, you can't rush in to it.

Attends intensive physiotherapy where she is given manipulation in combination with exercise...

At the moment I'm attending hospital for intensive physiotherapy for fibromyalgia, and the gentleman's an absolute gem that does it. Normally when you go to physiotherapist they only deal with one part of your body that your doctor actually says is wrong. Lets say you go for a bad knee or an elbow or something that physiotherapist can only work on that part of your body that the doctor has asked them to do, but the one I'm visiting as far as I know he's the only one in Scotland and he does the whole body. 

And they were actually treating me for golfers and tennis elbow and when I went to see this physiotherapist he manipulated something in my neck and miracles happened, I could bend my elbow, it was something... Whatever it was it was coming off my neck, so he manipulated my neck he went right down my spine. I go twice a week, I'm now in the gym. Whereas a year ago I wouldn't be able to walk into a gym never mind get on a bike. I can do 5 minutes, a minute on and a minute off the bike. 

You get leg exercises, because I've got a bad hip and they give you arm exercises in the gym. But when you're sore all you have to say is 'Look this bits sore' and he'll take you back through to the physio bit, and work on your back so it means that you're getting a lot of relief and you're also building up the muscles that you haven't been using for a while. Its working slowly but surely, but I think, I don't know if he would do for everybody, I know he's worked wonders for me.

Has tried numerous different complementary therapies, with limited success. Considers that what...

Complementary medicine does work for some people, but the reason that I went to an osteopath was mainly for my back, it didn't work. I went to a chiropractor, it didn't work. Now you're talking about so much money every time and they expect, sometimes they expect you to go twice a week or once a week. 

Now you think about it, if you can't work you've not got the finances and they're asking you for a certain amount of money every week or twice a week for as long as they tell you, you can still go. Because I mean you tend to go week after week for the simple reason, this week will be different, this week will make the difference, I'll feel different this week, as I say it does work for some people it just didn't work for me, unfortunately.

Staying with the alternative health vitamins and things like that, I do take vitamin C for the simple reason I don't eat a lot of fruit I don't eat a lot of vegetables, I don't eat any vegetables actually, where I should, I don't eat a lot of fruit but to keep the vitamin C in my body because that I had a lack of something and they said it was vitamin C so I take that. I had another one that for me it didn't work either. 

Where else did I go? I went to see some other health thing and they gave me something, I can't remember the name it was, but it didn't work anyway, and then I went to the shop up at [road] and it was like a mixture they gave you, it was disgusting, I don't know if I didn't take it long enough, see as I say I've got a funny body, for any kind of medication at all. What works on everybody else will not work on me, right, so it's a case of finding the right thing, and alternative therapy was not for me. I know somebody that does do it and she looks wonderful, it agrees with her, it's the way she survives that's fine, but if you don't try it, you'll never know. 

But the alternative therapies I have tried, I've tried acupuncture, I've tried chiropractor, I've tried osteopath. I did, a friend of mine gave me some reflexology, and that worked I enjoyed that, I don't like anybody touching my feet but I had a good nights sleep after he did that. So there might be the odd thing that yes it will work but I can't honestly say alternative therapies are for me. I mean as I say they might work for everybody else.  

I mean but if you don't try them, anybody should try, if its going to help you in the long run no matter what it is. Even if somebody says to you go and pick a pomegranate of that tree and that will help you, I would go and do it just to see if it did help, so if somebody suggests something, yes you sit with an open mind, you've got to. 

If you've got chronic pain you must have a mind that can accept other things, you're not just stuck in where what the doctor tells you to take. Same with the Pain Association we all did the same thing. They'll tell you about their own, or if something new comes up, 'I tried that it was wonderful', so the next week you go back in and 'That was rubbish it didn't work for me'.  

So what works for one doesn't work for anybody else so, find your own, but experiment, that's the one thing you should do you should try, no matter how, if its going to be costly that you prerogative you don't have to pay for it, but if you want to try something and it does work, what the hell, go for it, anything that makes your quality of life better, go for it.

Describes how she prepares for a special occasion.

Well as I say I made a boob at the weekend, last weekend, because I didn't pace myself for the special occasion, and I was ill, I mean, it was painful all the way through it, and it should've been a lovely occasion, and it was a case of I missed a lot because I was in so much pain. 

But normally when you think about it, if you go on a night out and its 7 o'clock at night you're leaving, you might've had a good nights sleep, fine, but you got up, you do what you want to do, not a lot, you don't work hard that day, you do very little, maybe the afternoon you go and lie down and go for a wee sleep, if you can, if you can't just pop some music on and relax lying on your bed, its amazing what it does to you, because you're not sleeping, but your body's relaxing, which means that if your muscles relaxed you're not in that much pain. 

So then you get up, then you can go for a leisurely shower or a bath whatever. You're not rushing into the shower and getting scrubbed in two minutes and run back out and start getting dressed five minutes before you're going out, you're actually doing it over maybe three hours, that you're talking about if you're going out a seven start getting your stuff ready at four. 

Put your clothes out, have your bath run, put your candles on, put some music on, but make sure you're relaxed, the more you relax the better it is for your body, because if you're in pain every where in your body it tenses up and the more tense you become the greater the pain. 

So if you're going out at 7 o'clock you start at maybe 4 o'clock, do very little all day. Start at 4 o'clock and say right I'll make something to eat first, so you'll maybe have a couple of sandwiches, then you go and lay all your clothes out, if you've got a bath, put bubble bath in your bath, put some candles on, light some candles, have a lovely relaxing bath. 

I don't mean anything like a five minute scrub, I mean you can lie, half an hour, as long as you're relaxed, you get up, you dry yourself off, you can walk about in your housecoat for a wee while. Maybe for ten minutes, say ten minutes before you're going away, then you just get yourself dressed, so that when you walk out that door going to where ever you're going at 7 o'clock you are the happiest most relaxed person you'll meet. 

It is completely different from what you used to do, you're in and out the bath, hair blow dried, everything all ready in 15 minutes and you're out the door. You can't do that anymore, and I mean it would be stupid to try. So yes, pacing for social events, even pacing for doing anything in your life, it should be that you are comfortable, its not a case of 'I can't do that because I'll get sore'.

Advises people to tell their GP about side effects and emphasises that side effects can vary from...

So it was like a continuation of everything. So you've got to be very careful, you've got to know your doctor, you've got to be very frank with your doctor and say to him look this is what's happening with this tablet. They've heard it all before, they're not going to hear anything that's going to shock them, so it's a case of if you're honest with your doctor and say 'Look this is nae, this really this isn't working, is there anything else you can suggest'. 

As long as you've got a good rapport with your doctor you can sit and talk about any tablet you're going to be put on, he will give you the most major side effects that goes with it, and you can discuss it with him, if its going to be beneficial to you and is there another tablet that doesn't give you so many side effects, if there is would it be because you're on some other tablet, would it be counteractive to that tablet.

So as I say a good relationship with your doctor you need to have, you need to discuss it with him or her, and say 'Look what is the best thing for me'. You've got to be willing to try different tablets. I mean even if the doctor says to you these tablets side effects are horrific, it might not be the side effects that you get, because every person is different. 

So it means that you're not getting the same side effects as somebody else is getting on the same tablet, so as I say its your body, it's the chemicals or whatever the make up of your body, its how that deals with any foreign substances that you put in it. And you have to actually be aware and be able to turn round and say to the doctor ok I'll try it but if it doesn't work I'll come back.

Explained to her family that she will ask for help but wants to try to do as much as she can.

Yes well, normally I don't like anybody in my kitchen, I prefer to do my own cooking. But there is times I have got to give up and it's a case of if I know that I'm going to be any sorer than I am when I walk into the kitchen somebody else needs to do it for me. 

There is a time when well meaning relatives and your husband or your wife you're glad of them, they are there. They over compensate for your pain and they think they're being wonderful for you because they're doing it for you, and it's a hard thing to try and sit your family down and say to them look alright 'I'm in chronic pain but I've still got to live. I've still got to do things on my own and I'll do as much as I can without hurting myself, and then I'll ask. If I need your help I will ask for it'. 

And believe you me, its harder for them to sit and watch you doing it than actually asking them for help. And it's a case of they think you're going to be, you're going to do so much you're going to be really sore. But when you get to the stage that you've done your relaxation and your pacing and your things that you do with the Pain Association it means that you know your limitations. 

So therefore there is sometimes, yes definitely there is sometimes that somebody else has to do something for you and you've got to be gracious enough to ask. But you have to ask you don't want everybody doing everything for you because if they, if you start that you're down a slippery slope, you end up sitting in a wee corner, feeling sorry for yourself, you can't do anything and the less you do the less you can do. You know, so it's a vicious circle, you do what you can and what you can't do you ask for help. And that's another hard lesson to learn as well, is asking for help.

Says that some people who claim benefits worry about being thought of as a 'malingerer' but she...

I know an awful lot of people that are quite private and they say I know quite a few of them that says that I'm not looking for charity, but its not charity they're going to be getting. 

Its like if you're entitled to income support or if you're entitled to DLA if you're entitled to it you should claim it, but there is an awful lot of people will sit back and say 'Well I'm not claiming that'. I mean they seem to think it's a stigma, that because you can't work you've got to claim income support 'Oh you're a malingerer and all the rest of it'. 

Its just your life you have at the moment, it might change, it might not, but then again you've got to have the best of what you've got and to have that you've got to have all the benefits that you can actually claim, because if you don't claim they're going to sit in a wee pot somewhere and they're not going to do anybody any good.

Had a home assessment for Disability Living Allowance which she said was quite personal but not...

It was actually somebody else that was on DLA and they says to me they thought I should apply, 'I said don't be so silly, I don't qualify for anything, never have', and she went 'I think you should'. So, that's when they told me to go and see the... 

So I explained to the welfare rights officer, the position and how things were and how things were in the house and how my husband had to help me with certain things and it was quite embarrassing to actually have to sit down and talk to somebody about it and then having to write it down and then having a doctor coming to the house and have a look at you, and go through all your... 'Can you bath yourself can you do this', its quite, its really quite personal questions they ask. 

It's a hard thing to do, but you should resolve yourself and say 'Right if they say no that's fine', but I'm going to have a good shot at it. And it was a case of this doctor came out and he couldn't have been nicer. I was expecting this big dragon coming in the door and saying 'You're a malingerer get back to work' or whatever. 

But this doctor was very, very nice and he explained every thing before he done it and he asked me to do certain things and I did do some of them but then on other ones I went 'There's no way', because if I had done what he asked me to do, they would have to get paramedics to get me back up off the floor, because there was no way I could get up myself, so it was just a case of you do what you have to do. 

I mean you do what you can but you don't, you don't do things you know you can't do, because at the end of it you're not going to, your not doing anybody any good. But this gentleman was very nice and he explain..., as I say he explained everything. And lucky enough first time I tried I got the DLA which made a big difference. 

So it means that I can go and get like vitamin tablets, I can go to homeopathy, I can do this and I can pay, you know it's a case of if you've got the money you can also try alternative therapies.

Thinks that doctors forget that people might not understand what they are saying and sometimes...

Well as I say communication is one of the main things that you've got to do. But if you don't know what's wrong with you, and the doctors don't know what's wrong with you, and the professors don't know what's wrong with you, and this one doesn't know what's wrong with you, it can be very hard to communicate. 

Because the simple thing is doctors aren't too bad but surgeons and professors and all the rest of it in the hospitals and all that, they've got a language all of their own and they forget, they went to school for what 6 years to learn all these fancy words but we don't know what they are. 

So communicating with somebody, like a professional, like a professor or a doctor or whatever, they know the medical names for them, we don't. So you've actually got to say 'Excuse me, go on and say that in plain English', because you would need to have one of these medical dictionaries and you would be there all week trying to figure out what the one word was that he said, so you've actually got to say to them look 'I don't understand what you're saying'. 

He might understand what he's saying but you don't so you've got to say to him 'Look you have to explain it to me, in my language not yours', and that can be quite, because an awful lot of surgeons and professors can be quite look down their noses at you kind of thing. 'You're supposed to do as I tell you, what it used to be years ago', you didn't answer the doctor back, you didn't do this and you didn't do that, you did what you're were told. 

Whereas now you seem to be more open, you can actually say to them 'No I don't agree with you', without being a very bad person, do you know what I mean?. Whereas years ago you don't answer the doctor back, what ever he says is wrong with you that's it, you've got to live with it. But you don't now, it's a case of you have to ask them to tell you what's wrong with you in your own, in your language not theirs.