Interview CP02

Age at interview: 29

Age at diagnosis: 23

Brief Outline: Multiple tests all negative. Diagnosed with Fibromyalgia, 1996. Pain management: In-patient NHS pain management programme. Current medication: tramadol, amitriptyline, sertraline. Past medication: ibuprofen, paracetamol, diazepam

Background: Not working/voluntary work for Fibromyalgia Association; single.

Paces herself by prioritising when she is going to walk and when she is sitting uses a buzzer to...

Yes, say if I pace my walking, if I can walk round the house reasonably, but if I'm going to go out I know I can probably only go out and walk once during the day, I can either walk down to our local shops and back or I can go into town and walk once round a shop there or I can go out in the evening and go to a few pubs in town, so I can only do one of them, so you've got to pace yourself by choosing which one you want to fit your energy into and accept that once you've done one you probably won't be able to do the other. 

So that's one way of pacing, its like choosing what you're going to be doing throughout the day, and also if for example I'm working on my computer, I'm supposed to have a break whenever I start feeling really stiff and sore and you often keep working until you're in so much pain you can't move, so its good to have a sort of buzzer just to buzz you every half hour so you actually stop and get up and stretch and move around so that you can pace yourself to keep going at bit longer by stopping at regular intervals to actually relax and take a break, because I know I get so absorbed in what I'm doing that you don't notice then pain until its so bad and then you're stuffed for the rest of the day which doesn't help.

Regularly takes a combination of pain medication and antidepressant drugs and can vary other...

Yes, I have had to take medication, I was started on painkillers quite soon at the beginning, mainly just paracetamol or Ibuprofen at the beginning in quite large quantities, and then I was on anti-depressant medication actually for depression, what they actually do with fibromyalgia now is use a good painkiller is called tramadol, which works as a pain killer and also it works to increase levels of Serotonin, which dampens the pain down, messages from the brain to help, so it works on a sort of dual action sort of system. 

And then they also use neurotransmitter drugs, like anti-depressants so you take tricyclic medication like amitriptyline, you take them in very, very low doses so they don't actually treat depression they just treat the pain and help you to sleep much more deeply. 

Because people, as soon as you mention anti-depressants, people react, "I'm not depressed", you know "I don't need those, they need those", but they need to understand that at a low dose they work in a completely different way and also to increase levels of serotonin you can take drugs that stop it being reabsorbed as quickly by the nervous system called serotonin reuptake inhibitors. 

So I take one of those in the morning to also act as a pain relief and also the serotonin can stimulate you and make you more awake, so that helps, I sort of take go to sleep pill in the evening, a wake me up pill in the morning and then I distribute my painkillers as I wish them during the day and that can completely vary on how you're feeling that day, depending on how you've slept or what you've done the day before and what you're planning to do that day. 

So some days I'll take quite a lot, some days I might not take any, and in some ways that's good if you can control it yourself so, yes.

Experiences mild side effects and advises people to persevere as side-effects are often worse in...

Did you experience any side effects from any of the medication that you take?

I think I'm quite lucky because I don't think I do, I mean obviously you get constipated quite often, from the amount of painkillers you're taking, a lot of people can get side effects from tramadol, which is the painkiller I take. 

You can get dizziness and nauseous and slight tremors and things, but I get absolutely none whatsoever, and with the tricyclics you take in the evening you can get a dry mouth, which I do have but I don't particularly find that very bothersome, you can get weight gain, it can make you really, really sleepy, so you can feel quite fatigued through the day if you take too much. 

So its important to mess around and get the right dose, in conjunction like with your GP. But a lot of the time when you start taking new medication you'll get side-effects for the first month or so anyway, while its beginning to work and then they'll actually fade away so it can be worth persisting with a specific type of drug before you think, 'Oh no I can't take this', because you might actually be throwing away an effective drug which might help you in the long term.

Advises people to communicate with other people.

I suppose a important thing to advise people is to keep communicating with other people, to never assume that people know how much pain you're in and people can't see your pain and people don't know where you hurt and where you don't, and if someone comes up and gives you a hug and they hug you too tightly you need to say you're hurting me now, to warn them. 

Like I can't shake hands with people because my hands are quite painful, and if they grab it and squeeze my hand it really hurts, so I'll sort of keep my hands behind my back or something and just like nod and smile instead. Not be afraid to up front to say I can't do this, or I'm sorry I can't help you put all those chairs out in the room, I can't actually lift them and just sort of state it as a fact not as an apology, because you know, you don't need to feel sorry that you can't do it, its just a fact and once they know that people just accept it. So communication is very important and not apologising for yourself.  

Her powered wheelchair allows her to achieve daily activities such as shopping so she can save...

Yeah, people have a funny attitude about being in a wheel chair, they think it is like their last resort, like my friend who has rheumatoid arthritis would never get in a wheelchair because she might never get out of it and what would people think, the way people treat you when they see you in a wheelchair and people can feel patronised, people talk over you to the person behind you as though you're not even there. 

Whereas to me the wheelchair is an extension of my car, so it means I can drive into town and park and then get out and carry on driving around the shops, which seems very sensible to me, it means I can spend the whole day going shopping by myself because I've got a power wheel chair, so I can whiz around, do all my own shopping, be completely independent, pile it all back in the car and come home again with no help whatsoever, which is much, much better than trying to park walking round one shop, which is all I could manage and then having to go home and sleep for the rest of the afternoon and maybe do one other shop the next day, whereas there's no fun in that particularly. 

So yes, I think a wheel chair is a brilliant idea as long as you use it in the way that you're supposed to, because obviously a physiotherapist will tell you not to spend your whole life in a wheelchair, which is obviously important if you're in chronic pain, you need to get out and exercise, but if you use it sensibly to combine it to pace your life, so I can go in, do my shopping, go into town and then I can use my walking energy in the evening to like go to the pub or go to the cinema or go and see a friend, so I can use my legs then, then you've done twice as much as what you would be able to do in a day. 

So I think that's really sensible, and it works really well, and it means now I can go for long walks outside, my wheelchair will go to between 6-8 miles, much to my boyfriend's displeasure, so we can go for 6 miles walk which is just fantastic.

Feels that communication is vital in relationships where one person has pain and that having...

Relationship in general.... Yes I think the worst time was when I very first became ill, I was actually going out with someone at the time, so we'd been together 2 years before, both teenagers, so we were very sort of much in love at the time and then for this to suddenly happen, when you're that young is something that's so hard to get your head round, and for him it was very, very difficult, to see me suddenly fall to pieces and to be so physically sort of unable, but what I think he found was how emotionally I was affected and how I found it so hard to get on with things at the beginning. 

In the end that relationship had to dissolve because we were just destroying each other through wanting to get back to where we were. Whereas relationships I've had since I've been ill, the guys have only ever known me in this situation, so again its that they accept you the way you are and you've got nothing to compare it with, and yes there can be difficulties, there can be a lot of frustration. 

And the fact that one time I booked holiday, we booked a holiday to Spain, and I really flared up a week before and we couldn't go, so we had to just cancel it, and that makes me feel guilty because like he had taken time off work and it was all planned and some people react to that better than others, I mean he was absolutely fine, it was we'll just book it for another time, we can get the money back its not a problem. 

But that can put strain on a relationship, the fact that you can't really make many plans when you're in chronic pain, because you don't know how you're going to feel the next day, you can book to go to the theatre in 3 months time, and then when 3 months comes you might not be able to go, so you've got to be incredibly flexible. 

So you need to be with someone who is flexible and understands how your condition works, its very important to be very open, very honest, to communicate all the time, to say 'Look I can't do that can you help?' , but also not to abuse somebody by sort of letting them run round after you all the time, because obviously you mustn't let any resentment build up what so ever between you because that can block communication. 

And one really good bit of advice I was always given is to make sure that both of you have someone outside the relationship to talk to, because its so unrealistic to think that you can handle it completely on your own, its going to get to one of you at sometime and its very important that the person who's healthy in the relationship has got someone they can go to scream to say 'I can't cope with this at the moment, you know she needs so much help, you know she's really depressed' or you know just to take it out on somebody else and then you're not taking it out on each other, because that's when all the guilt comes in and one of you might shut down, that is really, really important, that would be the best bit of advice I've ever been given. And if you put that into practice it works very well.

Feels that communication is important in planning the best time of day for sexual relationships.

Sex life. Yes it does it definitely does, with fibromyalgia, its all the soft muscle, all the soft all the smooth muscle in your body that's affected and that can include like your cervix and things like that, so it can make sexual intercourse quite painful, which obviously both of you need to appreciate and work with. 

You're going to get tired, you're going to be in pain, you need to choose the best part of the day to be intimate, where I'm most awake my pain killers are working properly and I'm in the mood basically, where obviously if you're very tired, in lots of pain, nobody particularly wants to make love in those sort of circumstances.

So again its this honest open communication, it does reduce your spontaneity you can't necessarily always think right lets go off into a wood and make passionate love, because you're not going to be in a situation to be able to, so you might have to plan a bit more, say like we'll have this evening together and make it really romantic and we'll make sure that I've rested in the afternoon and I've got all my energy to give to you then, so it comes down to pacing, it comes down to being organised.

Obviously you can be impulsive from time to time, but you've got to take it the way it comes, and the person you're with has to understand what situation you are in, has to understand the reality of it, but if they love you, they just accept it and its absolutely fine, so that is how I deal with that.

Has not worked so is not entitled to incapacity benefits but claims a top up disability benefit...

No, because I've never worked, because I became ill when I was 19, I don't qualify for incapacity benefit, because I've never paid any NI contributions, so I receive income support and they top that up with a '20 disability bonus per week because I've been ill for a long period of time. 

Then the income support qualifies you for the housing benefit which pays a percentage of your rent, it doesn't pay all of it, then you pay the rest of it through the income support you get, and then I also qualify for low level care in DLA, the disability living allowance, which just means that I can't prepare a meal in the first principles, I can't do all the chopping of vegetables, I can't stir an amount of food, I can't lift saucepans and all things like that, but I'm able to like dress myself and look after myself on that level. 

And I get high mobility allowance which is an exchange for a mobility car, which is absolutely fantastic because the independence it gives you is just unrivalled, I mean to be able to go into town when I want to and not have to rely on everybody for lifts all the time, and to know that the car is, you don't have to pay anything extra for the car its all looked after within the scheme, its an absolutely fantastic scheme, it gives you the independence that you need. 

But it is a very small amount of money to be honest and it takes a lot of planning and being very careful to live on it, especially when you're surrounded by all your friends who are also very highly qualified as you but are earning between 25 and 30 grand you know its hard to keep up with them, you can't go out an socialise in the way they do, but there again all my friends are so supportive I've never bought a drink in the pub ever, so you know they understand the situation and they don't expect me to be able to afford what they can, so I'm subsidised on a few levels there I suppose.

Her GP is willing to discuss new treatments and she thinks it is important to keep him informed...

I've got a very good GP now, I have got a GP who actually knows what fibromyalgia is, he's prepared just to sit and listen, he listens a lot, he'll let me try new medications, obviously because of my science background I probably know more about fibromyalgia than he does because I read so much in research papers, but he's very willing to let me be a guinea pig and to work with me, which I think is important with a doctor/patient relationship, you've got to work on this path of chronic pain together. 

But you've also got to be very honest with your doctor, you can't just go out and start trying a new treatment without telling him, because then he can't monitor what's going on. My doctor likes to monitor what my drugs are doing, and if I want to start a new therapy I will go and tell him, I am going to start this now, and then we'll discuss it and decide is this actually working, is it actually making any difference, so we can see if I'm wasting my money or not, but also I think you have to appreciate with your doctor what he can do and what he can't do. 

Like he cannot take your pain away, so there's no point in keep going to him and say 'Oh I'm still in this pain', there's nothing that he can specifically do, you have to accept his limits. Like he can refer you to a physiotherapist, he can refer you to occupational therapy, he can help you with... 

So if I want a specific referral, I'll go and say I need to see a physiotherapist at the moment and he'll just do the referral or I think I need a bit more of this drug, can we just try it, rather than just experimenting on your own, which actually might be dangerous, because the interactions with the different drugs, he's there to point me in the right direction so we work together and it works really well. But I don't bother him all the time with things I know he can't solve, because that is where the frustration gets in, yes it works well.

Recommends using the Citizen's Advice Bureau for information about benefits and has also searched...

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.