Interview CP15

Age at interview: 42

Brief Outline: Pins and needle, numbness and neck pain since 1996. Surgery: Neck surgery for cervical mylenopathy. Treatment: Physiotherapy before and after surgery. Pain Clinic given oral steroids. Pain management: NHS outpatient pain management programme. Current medication: gabapentin, amitriptyline.

Background: Scientist; single; 1 child.

Found it hard when she first went to the pain management programme because it felt like there was...

You've basically exhausted the medical profession. You've been to (a), (b) and (c). None of it's worked, and then when I went over to the Pain Management Clinic I felt almost like an old horse that was being farmed out to pastures, you know, we can't do anything with you so we'll put you into this, this programme because there's nothing else we can do.  

So I think the Pain Management Programme had an awful lot to live up to because everyone that was on the programme had had many years of pain and a lot of people had surgical intervention and they were pretty hacked off by the whole thing. So you go in and you're expecting these people to do something that none of the other professions had managed, professionals had managed to do to-date, so in many ways they got a really pretty hacked off bunch of individuals to work with and in hindsight you know again that's not very nice place for them to be because I think we were all very disillusioned and we were all at the end of our tether. 

But sometimes going back to the basics you know, made a difference. Just getting you to talk through things sensibly but it was time. You know, you had a full morning and you went for several weeks and it was almost like this was a time set aside that you could say 'Yes, I suffer pain' and you could actually say it without feeling embarrassed, without feeling you have to hide it, without feeling you have to put on a brave face. 

There were several times you know I had to go to the loo just to choke back the tears because it was almost like here are people accepting and believing that I've got pain and 'Oh look that person's saying something similar to me'. So you didn't feel this oddball and we were a real spectrum of personalities. You know some real characters all with this common theme and you knew they wanted to get on with their life but you know, it was being, it had been hard to find the time to talk, the time to share. It was quite important.

Learnt about flare up first aid plans at pain management and still uses them to manage her flare...

Yeah and then I think what, then we went through what do we do if we have bad pain. You know make up your first aid scenario and I use that now. I used it last night and on Saturday night. Which is the pain was bad couldn't sleep, it was going into my other side, and I thought why am I just sitting here? 

I know what I should do and know I should get up, take the medication, get my heat on, you know sit and watch something on the telly, relax, don't get uptight and react, just accept it and accept that just relaxing is as good as sleeping if that's all you can get. 

So yeah, I think the Pain Management Clinic for me was the right thing at the right, no not at the right time, I could have done this long before then but maybe with my personality, maybe I had to go that far before I would have accepted that I needed to go.

Feels frustrated that she cannot reduce her medication for nerve pain, but has found her GP very...

I hate the idea that I'm on medication. It's actually making things worse and I actually didn't think I needed this one particular medication and when I was at the pain clinic, you know, I made it very clear that I wanted to try and come off some of the medication, wean myself off and being very positive for that I perceived that I was going to be on medication for a limited period of time because it was necessary, but there would be a time when I no longer needed it. And when I started to try and come off, one medication that gives me the, I think gives me pain in my joints and has made me put on a lot of weight.

Which medication is that?

That is gabapentin (Neurontin). It's an antiepileptic drug but it's good for nerve based pain. And I'm on the highest dose of that, that your, the GPs are allowed to prescribe in this country and I tried and all I did was drop one tablet a day and by the end of three weeks just dropping one tablet a day and that was for 2 weeks and then third week I dropped down, I dropped two out of the six tablets a day and it was just so uncomfortable and so exhausting because you were dealing with the pain, you know, and the feelings so that was tough because that's the one I really want to try and come off of.

But my GP, the one that I moved to, has been very good and I went back and was fairly distressed because I then tried, when I couldn't come off gabapentin when I went back and we said 'Well let's try to take you off of amitriptyline, let's wean you down off that' and exactly the same thing happened. 

I went down, I went from 50 down to 40 and that was okay and then I went down to 30 it was just the jiggling, and the tingling, the numbness all down the left side, just all you know got to a level again it was so tiring coping with that and trying to maintain a normal momentum. 

But she was a bit more upbeat and she said 'Well look just get back up to 40. You were fine at 40. Positive fact is you've reduced it by 10, one fifth.' And I said 'I've already been there. I've done that. You know I've tried to do the 'Whoa I've came off of it' ' and I said 'But it's hard when you're on still such a high dose two years after surgery and you're thinking I don't want to be on this for the rest of my life. 

Finds that she gets a dry mouth from taking amitriptyline and has to use special toothpaste to...

You've got, with the amitriptyline you've got dry mouth sensation and that is absolutely horrible and because I present in a, you know when I go down for meetings I'm presenting and when you're talking for half an hour to forty minutes, it's, you can almost feel your lips, you know, sort of like sticking to, and it's just horrible and I'm sure people are not aware of it but I'm aware of it and that then has an effect. 

I mean for example the mouth dryness has then affected my teeth, which again I didn't even think of but I go for my regular check-ups and basically because the, I'm not having the same secretions, I'm not having the same anti-bacterial activity in my saliva because it's basically not there, and that is starting to affect my teeth and now I have to use special toothpaste and you know it, one thing leads onto another and at the end of it you just sometimes think you're a complete and absolute wreck.

Had researched what would happen in her operation but not what would happen after and how she...

So I went down for surgery. I had my pre-med, went down and I was still wide awake and talking to the surgeon when he was scrubbing up and he is quite a character, and very, very pleasant man but very, very busy obviously and lots of demands on his time. 

And so that was obviously, you're put out and I remember coming round and right away I knew that this, before I went in I had started to limp. It really was starting to badly affect my left leg and I was starting to limp and I'd not long had got a new car because my old car didn't have power steering and the actual, oh it was nightmarish, so at that point I got a new car and I wasn't sure I hadn't got the seat right and always looking for things other than yes there is something wrong but it was, I was walking with a limp and people were commenting on it. 

And when I woke up after surgery that sensation was gone. All of a sudden, and then and that moment I knew, I absolutely knew that I had been experiencing a lot of pain and a lot of very, really uncomfortable to the point of feeling sick sensations and they were gone and I remember through my garble to the surgeon saying 'My left side's okay' and he said 'That's great. Wiggle your fingers. Wiggle your toes' and I'm saying 'But my left side is fine' so I was really buoyant and after it wasn't nice because I was sick and I had to get catheterised and I didn't, although I'd researched what the operation would involve, even the surgeon didn't explain to me what I would experience afterwards. 

So I lost my voice. I couldn't swallow. So I was limited to what I could eat and I hadn't expected that and I had a big row of staples across my neck and I hadn't expected that either.

Found it hard to admit that she was depressed and was annoyed that her GP suggested...

But by the time it came to I would say, oh a year after surgery it just, things were getting worse. The pain was worse. The sensation was worse. I was depressed, but I went quite a far way down the line before I would admit. 

But when I went to my GP, because he would like to see me about my medication when it changed etc., and he was quite abrupt with me, you know, it was almost as if, 'But you have got depression. Do you admit you've got depression?' And I was trying to say well you know 'I've got a reason for that so it's not as if it's, it's', I was trying to say 'Well okay if maybe I'm a bit down but you're not listening to me I've got pain. I'm in pain. How can I best cope with this pain?' 

All he wanted to do was to give me Prozac and I was like 'Well I just don't want Prozac. I want, I want to get to the bottom of this. I want to get the appropriate medication that helps me cope. You take away my pain, you will take away my depression. You will help me, you know, don't cure the symptom, cure the cause.' 

I was completely low, really low, and at that point I realised that I was off work and I thought no, this is not good. You know, I could do myself an injury. I really feel that bad. I was bouncing off the walls and just by pure chance I actually got an appointment with a new female doctor at our practice and I went to see her and we sat down and she talked to me. 

And it was the first person that seemed to understand what I was juggling, my career, my home, my child, in isolation but with this chronic pain and symptoms that never got any better, they just got worse. 

And she understood that all the other symptoms I was experiencing they were acute on chronic pain and then we agreed a strategy that would address the acute issues and then move on to the chronic issues. And she actually gave me my medication. We talked about Prozac and we, I agreed because I realised by that time, you know, I was very low, but she was so kind and she understood me and you know, the relief that someone understood, that all I was trying to do was to have a normal life.

Her company has a good sick pay policy and she has a good salary but chronic pain still affects...

I've been very, very lucky, when I was off on sick leave I get full pay for six months and then I go onto half pay for another, indefinitely actually. It's changed within our company so I have very good healthcare. Also because working for a company we get private healthcare but sadly I didn't, that wasn't recognised for my condition until after surgery so... but before then it was financially draining because I was paying privately to go to a chiropractor. 

After surgery it was very expensive because I was going for acupuncture and I was going for therapeutic massage and it did drain my finances and basically you have to choose literally between doing one thing or another so I find that while I was paying to have a personal trainer to help me with my exercise so I didn't do any further damage or make my pain worse and then I was paying for a session that was like '60 a week you multiply that by 4, there's not very many people who could afford to have that amount of money of their income on a regular basis. 

But basically when I did that I did nothing else. The personal training when I was off work that was different. I didn't do that because I was in the gym at very quiet times so the trainers that were there worked one-to-one with me but they, the therapeutic massage and acupuncture did drain me financially particularly because I am on my own with, with my son and whilst I get maintenance from, from my son's dad it doesn't compensate that's [son's name]'s childcare or my son's childcare costs so I think in one way I've been very fortunate. 

I've not lost any pay because of my illness and when I went back, I went back I worked I think I worked up until 3 o'clock. We, we had a staggered regime that I talked through with Personnel that when I went back to work I didn't keep to it and I ended up making myself very ill with pain so I had to almost reset the clock again because I didn't do the hours I was meant to do I did double. 

So I've been lucky I think because I have a profession. I think again my salary was maybe in the ball mark that makes it easier for me to cope but I did have to give up to have those things but I felt it was worthwhile because pain was so big in my life at that time that it was important to address it but for example now I would like to but I've committed myself to other things which financially means I can't afford to go and have the therapeutic massage and to be honest for, for someone I think with chronic pain it would have to be on a weekly basis. 

Because normally they would only have to do like very small not manipulation but be very gentle with you and gradually built up because if they go too far then you end up exacerbating the pain and making it much worse. So you basically have to build up and it takes many weeks before you get the relief but when I did do it I did it for a long time and on some occasions it was twice a week, I did find it helpful eventually. I didn't think it was doing anything at the time but it did. So it's something I think was really worthwhile but expensive. 

When she was deciding whether to have surgery she used the internet and asked her consultant lots...

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.