Living with dystonia Coping with dystonia Experience of attending pain management Is pain manageable? MY EXPERIENCE OF A PAIN MANAGEMENT PROGRAMME This article tells the experience of someone with long term pain who attended an 8-week pain management course. Everyone’s experience of pain differs so the views described here or the description of the course may not necessarily match your own experience. Over time I was finding that I was less able to do things without causing my pain to get worse. I would regularly push through the pain for as long as possible and then have to stop. Realising that the pain was beginning to affect many areas of my life and was bringing up many and diverse feelings about past (blame) present (realisation) and future (fear of what was to come) I decided to do something about my chronic pain. I was basically just getting on with things and grinning and bearing it (well not too much grinning actually). Through my work I then became aware of pain management programmes and was actually encouraging people to get on one of these, whilst still not even thinking – why don’t I try this? So, with the whole process from that realisation through talking to my GP and attending an introductory session, and a one to one with three separate professions, taking more than three months, I ended up being invited to join an 8 week pain management course run at my local cottage hospital. This is my story to date. I say to date because you get on-going support after the first 8 intensive weeks, even if that merely means leaving a tortured message on their answerphone and waiting for a response! DAY ONE They certainly know how to make a woman feel better – the very first words that emerged from the professionals lips were ‘there is no cure for chronic pain !’ However, this is just them being honest and realistic and explaining that this course will not cure pain but will help me to recognise the triggers and to also realise that we are often our own worse enemy where pain is concerned. I got up this morning full of all the ions – anticipation, trepidation, reservation, desperation, stepping into the unknown of actually admitting to myself (let alone others) that I even have pain, because if I talked about it, it made it real. I walk into the room and there are already about ten people sitting down in an awkward silence – I resist the urge to turn on my heels (even though that may prove to be quite painful) and take the only seat that remains unused. The team then walk into the room and introduce themselves – it has to be said – a very impressive lot – a pain nurse specialist, a clinical psychologist and a physiotherapist. Then it’s our turn – in turn we each tell our sorry tale about why we are here and our journey to this point. Our stories as to what caused the pain vary widely – accidents at work, damaged nerves, post-operative pain. My experience at first didn’t seem to fit in because in my view, my pain was far less ‘logical’. I simply do too much which exacerbates the pain, but, on day one, it seemed very difficult for me to accept that I could cut any activities out of my very busy life – I work full-time, I am a parent, and a grand-parent and a dog owner with very little spare time for r & r. That, by the way was the professionals assessment of me – not mine ! DAY TWO Well, here we are again, no drop outs and its already week two – oh joy ! The physio talks us through what is pain and the difference between acute pain – usually sudden in nature and caused by damage of some sort – and chronic pain – which continues even though healing is complete. We then look at the gate control theory of pain, which is fairly recent and argues that your spinal cord is the main messaging service linking body and brain and that we feel pain when pain messages get through to our brain. Basically, it all seems quite logical – we have a series of gates in our spinal cord which can be fully open (all the pain messages get through) or closed (all pain messages are blocked) or, ajar (some pain messages get through). Lightbulb moment – we actually have some control over our pain. Emotions that open pain gates include anxiety, worry, anger, fear, stress, tension, being physically uncomfortable, focusing on pain, low mood leading to unhelpful thoughts, being unhappy with medication or using it erratically, lack of exercise or (as in my case) overdoing activities. In opposition – things that will keep the pain gates closed include – understanding pain which leads to feeling in control, confidence, relaxation and feeling calm, helpful posture, distraction techniques, helpful thinking, skilled or nil use of medication, planned exercise with a gradual build up and pacing activities. We start our structured exercise programme which obviously needs to be tailored to every individual and works on three stages –MOBILITY, STRETCH AND STRENGTH. The physio then takes us through some tentative and very gentle exercises with the remaining two professionals looking over us like over protective parents. It is emphasised that the most important thing is that you find your initial tolerance. This is the amount of exercise which is comfortable on a good or bad day – testing out tolerance levels. We are issued with a chart and a list of exercises and are asked to keep a note of the repetitions and regularity on good and bad pain days. GOAL to start at a comfortable level of exercise and gradually progress these exercises to include a variety of exercises for the whole body. DAY THREE We are all still here on week three (who said it would never last !) and already we are bonding (probably together with our backs against the wall in adversity) and getting to know more about each other. This is a bit of an exercise in how people deal with the pain with a diverse group, including one man who deals with his pain with drink, medication and very negative self deprocating humour. This week we are looking at The Stress Response – fight or flight to you and me. The clinical psychologist takes us through how to deal with the stress response when neither fight nor flight are appropriate responses. She tells us that, although the stress response is an automatic one, we can learn to control the unwanted physical symptoms it causes, and stop it when it is not needed. This obviously will have a very real effect on whether or not we open the pain gates (I feel like we need some jaws like music when they are mentioned !). We are told that there are three important ways we can attempt to control this – DIAPHRAGMATIC BREATHING – DEEP MUSCLE RELAXATION – VISUALISATION TECHNIQUES – i.e. The Relaxation Response. Our homework for this week is to keep a chart (to be handed in next week) of the following – MEDICATION, ACTIVITY, FEELING, STRESS, PAIN and – wait for it – we do this for a week 24 hours day (unless we are asleep – which with chronic pain is very unlikely !). We then move on with the pain nurse specialist to look at managing activity – ACTIVITY CYCLING . Apparantly people with chronic pain tend to do two common things – base what (or how much) they do on how they feel – or – avoid doing things that they think will make their pain worse. So, to put this in a pictorial way – if your activity is a mountain – on a good day you try to go up it in one go which then leads to your being out of action and in extra pain for days afterwards. And, quite understandably, as a result of this experience, people decide they will stay at the bottom of the mountain and avoid going up. So, the theory goes that, if you find that by using the following tools – PACING, PLANNING, PRIORITISING AND GOAL SETTING, you can achieve more by managing your activity levels differently. So, instead of peaking then struggling and peaking and struggling repetitions, you learn that a middle ground which is not overdoing things but is also allowing a reasonable level of activity is the preferred option and achievable. The other side of this is that we can start prioritising out of necessity which means that we will definitely do the things we absolutely have to do, i.e. work, etc. and then drop out of socialising and other pleasurable activities which can lead to isolation with pain – not being a happy puppy ! More exercises to finish off this session with people full of trepidation at doing the floor ones, but actually managing it and feeling elated. We really have formed quite a tight team now – albeit a very mixed bunch. One of the best things about being part of this group is that, when you are in pain or need to move due to stiffness there are no awkward explanations necessary – you simply get up and either lie down or stand up or move around – the freedom this gives you is immense – not having to explain yourself because everyone in the group either understands or has studied chronic pain. LIGHT BULB MESSAGE FROM THIS SESSION – stop and think – little and often – do not do 5 minutes more ! DAY FOUR Today we are looking at Setting goals and Succeeding. Decide which valued area you would like to change in your life, then work out where to start, break your goal down into manageable steps (the first step being the most important). It is vital that you are 80% that you can achieve each step, even on a bad pain day so you don’t exacerbate the pain. We then need to try this for a week and review it to see how it is going and what, if any effect it is having on your pain. Then, slowly but surely, plan the next step and go through the above. Setting goals can help you achieve but it also takes patience, perseverance and practice and I am definitely not a patient person where activity comes into play – I would definitely in the past do something and see it through to the end and then suffer for days afterwards as a result of overdoing it. Will I get control over the urge to please at any cost – hopefully with time and practice but I have taken on board the golden rules which I should be putting into place ! Careful planning is the key; stick to the plan – nothing more, people who rush themselves don’t make quick progress, don’t be put off by negative thoughts, remember if a goal is worth reaching, it will be worth it, even if it takes you weeks, months or, years ! and, most important, give yourself a pat on the back for each step forward. Homework – to fill in a chart of goals and which part of your life these goals will affect, i.e. partner relationship, parenting, family relationships, social relationships, work, leisure, community, personal growth, health and spirituality. The second half of the session is dealing with medication. Now, where medication is concerned, let us say I am a sceptic, and this is probably down to the job I do as well. I am the person who reads the instructions and sees all the side effects. Once again, I am very different from the others on the course in that I under medicate if anything whereas they are all for the most part overmedicating. This is due to several factors, the main one being that I am the only one who is working so I cannot medicate when it will either affect my performance or have a hangover type side effect which drifts into the next day. A trip round the group discloses all kinds of misdemeanours and dangerous practices like alcohol and medication mix, sleeping for up to 18 hours a day on sleeping pills, etc. etc. We all had to enter our medication on the form previously and we then met individually with the pain nurse specialist who went through it with us and offered support to anyone who was misusing medication or mixing it with alcohol, etc. Another clear message which came out of this session is that people who are on the pain management programme are encouraged to review their use of pain-related medication because habitual use of pain killing medications means the body gets used to them and they stop being so effective. All medications have side effects which continue even if the tablets are no longer very effective in giving pain relief. Sometimes medication use has just become a habit. Although some people realise that their pain killers are no longer helpful, they find it difficult to stop taking them because they feel they have no other way to cope with the pain. Therefore one of the main focuses of the pain management programme is to learn new skills and strategies that can reduce the need for pain medication. DAY FIVE Family and friends session – this was always going to be a tricky one. This looks at the effects of someone with chronic pain on their partners, children, family and friends. As someone who hides the majority of her pain from her family this is always going to be a challenging session, as my daughter and grandson are going to be there. The group split into people with chronic pain and their family, etc. and we looked very honestly at the effect this has on both groups and especially to ask the people with pain to look at maybe how much of a pain they are to live with – excuse the pun! People needed to be very honest and my daughter had already warned me that she was going to tell tales – fortunately my grandson is only 6 months so not talking yet. Lots of tears and emotions in this session and lots of realisations on both sides I think. One very important message from this session was communication and I have certainly started to talk to my children about the pain and have started fessing up if I am in too much to say yes – but, to date, I still tend to say yes so there is more work to be undertaken on this one I feel. DAY SIX Looking at negative thinking versus positive thinking. Imagine the mind as a clear blue sky and then some dark clouds start to drift across that sky. It is about stopping those negative thought clouds from spoiling what was otherwise a lovely blue happy sky. These thoughts can be – I can’t cope, There’s nothing that will help me, I’m never going to get any better, I can’t do anything I used to do. They can be very destructive and put a lot of extra pressure on you, i.e. I ought to be able to cope may push you to overdo things which in turn can make your pain worse. Negative thinking also stops you from taking control and often ends up making you feel worse and can stop you using practical things to help your pain, like relaxation, exercise and pacing. What to do ? Recognise negative thoughts. Challenge the thoughts. Develop positive statements. Negative thoughts create a negative or vicious cycle which in turn feeds negative feelings or emotions which in turn leads back to negative thoughts. LIGHT BULB MOMENT – positive thinking leads to positive action. The homework for this one was fun – NOT! We had to list all negative thoughts as they came across our blue sky thinking. After each week we would finish with a relaxation exercise which was very powerful. The week when my grandson came along the silence was only broken by the slurping of him feeding from his Mum which was actually quite relaxing ! Second half of this week is understanding diagnosis and the body and briefly looked at age changes happening so gradually that the brain does not see them as a threat and does not need to produce pain response and that age related changes on xrays and scans are not normally pain provoking. Joint movement encourages production of joint fluid and keeps it nourishing the joint. Most structures have a nerve supply and so can be a source of pain and many structures can refer pain to different areas. Finding a structural diagnosis can be like looking for a needle in a haystack. I like this week’s homework – we had to identify a way of spoiling ourselves and then report back next week that we had undertaken this. I work full time so, between this and various grandparent duties I do not have time for long luxurious baths. My pledge was to have at least two Lush baths with relaxation tapes playing in the background. I achieved this goal and felt very positive that I had actually taken time over something for ME. DAY SEVEN This was the session where we had our individual assessments and reviews which would in turn go towards the report the staff will send through to my GP. I felt strangely nervous like when you have to take an exam at school or college. This was also mixed with more exercise sessions and introducing the strengthening group of exercises. We also finished with a mindfulness session which was extremely lovely and relaxing and were given a tape to take home to practice with. DAY EIGHT A sad day because I would not be seeing my compadres for a month and I will miss them and the rather selfish weekly ability to talk about pain with people who understand because they are there as well. So, what have I learned – the answer is loads, but one of the biggest lessons is that it is not something to be ashamed of – to be in pain – and that, it is ok to say no (although I must admit this is work in progress). If someone can tell me how to say no I can’t pick you up to two gorgeous little grandchildren when they need their nana then I will expect them to also explain the meaning of life in detail ! For me, one of the most valuable lessons has been to admit to myself that, Houston, we have a problem, but that it is not insurmountable and that I am not alone. I thank you. If you would like to discuss any aspect of this article, you can always call the Dystonia Society helpline on 020 7793 3650 or email [email protected].