How other people see us

Overheard two colleagues comment about people with chronic pain, "Well, they do tend to focus on the pain, don't they?"

I was busy (& guilty of eavesdropping) so I didn't say anything but it's made me think about why we are perceived in this way. If you have chronic pain it's easy to focus on it because it can be so all-consuming because you desperately wish for it all to go away. You will spend a fair proportion of your life hoping for the magic cure. Even if you know that isn't going to happen & you can tune out of the pain it still doesn't stop you from thinking like this sometimes. We are told the correct way to deal with the pain is to acknowledge it but not dwell on it in a negative way, yet this takes resilience and practice and the right kind of moral support, which can be thin on the ground.

If you are a patient confronted with a health professional asking about your pain you are going to have to talk about it. And it's not a very pleasant thing, so of course you're not going to brush it aside and pretend it's Ok if you have a sympathetic ear sitting in the room with you. I'm sure there's no point fibbing and saying you haven't really got any pain thank you very much because that's not going to make them help you. And how many of us have worried that they might not believe us so we emphasize the bad bits? (Come to think of it, are there any "good" bits?)

And if the health professional is trying to help you to ease the pain with some sort of intervention you will spend a lot of time wondering & hoping, "Is it better yet?" If that treatment flares the pain up you might be a bit anxious about trying it again, or stop altogether. It's human nature to avoid things that don't feel too good or are difficult.

I know all of this because I have gone through it, and still do.

I am also a health professional. I can see the frustrations of my colleagues who think their patients are being too negative & fixated on the problem of pain. Being fixated on a problem can stop patients from making progress and they might not realise this.

And I can see it from the side of the patient who just wants to feel better but is lost in the fog. It takes a long time to get used to the idea that pain is sticking around and although it can be managable it's a wild beast. Being fixated on the problem can be a distracting waste of time, but it's easier said than done to think about other things. Besides, we live in a culture & an age where if there is something wrong we expect it to be fixed just like that, and I don't think that it's always made clear that this idea is at odds with chronic pain. It also hurts when someone does make this clear, if they haven't explained it in the right way, quite often several times, over a period of time so that we can adjust our thoughts.

Spent the rest of the day crawling about with my wheatie pressed to my head / neck, and eventually swallowed my pride and some paracetamol, hoping no one assumed I was too pain-focused. The thing was, in order to deal with the immediate problem of pain interfering with my work I had to focus on it for a short while in order to force it back in its box.

I have written this as a way of making sense of my thoughts. Perhaps next time I hear comments like these I will be brave enough to make a sensible response & spread the word : be patient with your patients! We're only human.

26 Replies

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  • Hi ,sadly I think both parties are to 'blame' for this dilemma. Patients because some do have a tendancy to be fixated on their pain with a 'woe is me' and do little to help themselves,then there are many who do try to help themselves ,but do succumb to the being fixated when its bad and never ending and they are drained.and doctors/consultants etc ..because some tar all with the same brush and see us all as pity seekers,..some because they believe in black and white and their trainuing has told them that chronic pain is all in the brain signals only and then there are those who dont who do listen and understand,empathise,and seek to offer and adjust assistance.

    Me ..I'm a try and help myself who succumbs sometimes and yes sadly I do feel like I have been left to it by my medical people,but I also know it is for me to speak up and re contact them and say hey Im not getting any relief or its getting worse,can we try something else,see someone else..I just wish when I did this ,i would be referred and not as i feel whitewashed,even if they think it probably of no benefit,refer me for my own peace of mind ,so i can oh well thats ok ,at least we tried .

    Thankl you for posting this ..thought provoking and a chance to 'moan' lol.

    wishing you pain free or at least tolerant times :) jan

  • Its just a general lack of understanding on both sides. Those without chronic pain have only a headache, sinus or toothache to compare pain to. These although bad at the time are short lived. They take all sorts of pain killers, go lie down in a dark room for a few hours to recover. Then spring back into action when the pain stops. Rarely do they think, what would I do, how would I cope if this pain didn't stop? No-one can spend a lifetime in bed with pain.

    Those who moan continually about the pain unfortunately tar us all with the same brush. Moaning is extremely counterproductive. It makes you feel worse, exacerbating the pain, it alienates those around you, it makes you apathetic, and guess what, when you stop moaning you still have pain.

    The way I see it, no amount of going to drs, or consultants will change my pain. There is no cure. My brain for whatever reason is firing off pain signals relating to an physical injury that has been manipulated back to normal. This pain signal is not going to go away. I have 2 choices, moan about it, let it consume me, turn me into an emotional wreck or tell myself this is me now, I've got pain, how can I make my life better to accommodate it? that means changing your lifestyle, environment, friends (unfortunately, chronic pain sorts the good from the bad, drop the bad, they are just adding to the negativity), attitudes to pain etc

    I will be honest, I had a hellish 3 months at the beginning of my treatment by alternative therapists, it was a very dark and lonely time. The treatment caused worse pain than the original pain and I was requested not to take pain killers because treatments at subsequent visits were based on where and how intense I felt the pain, whether it settled back to the original pain or if it was less. I was taught to read my pain. And I still do now, 11 years later.

    Once I found out drs couldn't help, I looked elsewhere. Afterall, if it takes an hour long massage to relax my body, then thats an hour I am pain free. If I get a couple of hours pain free from a meditation session, then thats another bonus. You can see, if you spread all these alternative therapies through the week, you can build up what I call painfree islands, an hour here, an hour there. I think of my work as distraction therapy, because I make things from textiles. I design as well, make for private and commercial clients. Creativity is the best therapy for anyone, even those in pain. Use it as a journey of self discovery. Get some paper and coloured pencils, just draw randomly, mixing colours in patterns, shapes. Proper pictures will come later. If you like it, go to a drawing class. If not, try something else.

    Yes, you have to accept its a short period of being pain free, but the more you do it and the more variety, there will come a point where the effect will last longer and longer, because you are not focusing on the pain anymore. You are looking forward to the next painfree session. And alot of these things you can do safely, frequently and by yourself, once you have learned the techniques.

    Yes, it will cost money in the beginning, but you ask, how could I do this myself at home. Most therapists will offer to show you some things to do. Think how much money you are wasting on prescription medication that doesn't work.

    I am very in tune with my body. This is something I was taught by 10 different alternative therapists. Foremost my body needs routine. The same things at the same time each day. This took a long time to accept because I was always impulsive. If I need to break the routine by going on holiday, I start changing my routine to match the holiday one, two weeks before going away. This reduces the chances of exacerbation. And when I return, I slowly change back to my normal routine.

    My day to day life is a rotation of strategies that help minimise the pain. These are at fixed times, every hour and a half. Around this I slot in my life. My life consists of a variety of activities too, housework, work, shopping, meeting friends, taxi-ing the children etc.

    It took me a long time to accept my life as a timetable, with little variety from day to day. But now, I've discovered I can design, sew and make things. I can achieve most things. I once decorated my children's room when they were staying with Granny. I wrote a list of what I needed to do. Eg move chest of drawers - take out drawers (sort through clothes). Chest too heavy to move - sit on floor with tight Pilates tummy and use legs to push away from wall. I continued the list for everything in the room. By varying activities, using strategies, and planning, not only did I redecorate the bedroom, I had sorted out old clothes, broken and forgotten toys and re-arranged the room. It took me 3 weeks. My husband was itching to help as he would have done it in a weekend, but I stood firm and said I needed to do it myself for my own satisfaction and sense of achievement. It didn't matter to me how long it took. What mattered was that I had planned it in enough detail with enough strategies to be able to do it myself without making the pain worse or injuring myself.

    Of course I wish I didn't have my pain, but my life would be very different. I would be working full time in a job that was just a job, no prospects of promotion, side stepping etc. I live rurally and jobs are scarce so people tend to stick with them even when they don't like them. I would have very little time to explore creativity - I sew design, do photography, draw, garden. Pain has given me the freedom to explore these things, on my own terms at my own pace and has given me a job.

    In a nutshell, I don't see the point of moaning and negativity, because you will still have the pain. Much better to work out how to live with it, make changes to accommodate it. And have some fun exploring alternative therapies. And even more fun finding hidden talents. Cut yourself loose and embrace the freedom.

    People who have lost a leg don't sit at home moaning about it, they get an artificial one or a wheelchair and get on with their life. Someone who has had a heart attack doesn't sit around waiting for the next one, someone who has survived cancer doesn't focus on the next time it might happen, they get up and live life. So why should it be any different if you have pain?

    We hear "its only pain" frequently from those who don't suffer. And they are right. It is only pain and it can be only be pain if you take control and work hard to push it away. Nobody can help you but you. Who says drs are the best people to help? Very few are taught about chronic pain so don't understand it. They dish out medication that doesn't work, and continue to do so until they've gone through the list. Why make yourself worse by taking what amounts to poison? And then why take more medication to treat the side effects? The drug companies are the only ones benefiting, making millions from drugs that don't work.

    Athletes, ballet dancers, footballers, rugby players choose a profession that causes frequent acute and chronic pain. If pain were so bad then we would not have any sports people, dancers or athletes. They choose to have pain and do they mention it? Do they continually focus on it? Even when they break a leg or tear a tendon, they are focusing on recovery, getting back to normal.

    People are surprised when they meet me that I have chronic pain and don't use pain killers. Its not something I tend to mention unless necessary, like at a course for h & s reasons. Sometimes I tell my story as there is genuine interest or it is relevant to the course. (I go to lots of free business related courses to socialise and network - I'm too tired in the evenings to go out). Most times I make it clear its a no go area because I don't like focusing on it. People think they are being kind by asking about it, but do you generally enquire after someones elbow, eyelash, nostril? thought not. Pain is a part of me just like my nostril, elbow, eyelash and does not need commenting on.

  • I simply cannot relate even 1% to what you say, it's as if you were talking in another language...I will give you the benefit of the doubt for now, but I have to state that your post is so alien to me, I am suspicious that there is an element of trolling here... sorry if that causes offence, but I would be dishonest if I didn't' say what it makes me suspect, I would rather understand it than dismiss it as such without reasonable consideration though.

    The best I can constructively relate to is either you are wired very different to me, and the vast majority of others (which of course is possible) or you simply do not relate to the level of pain that many suffer from. So we know where we are coming from, I don't consider myself to be in the very worst of pain that it is possible to suffer, although I have had pain as long as I can remember, at an increasing level, without any real hope of an actual "cure" of the conditions causing it.

    OK, one man's pain is another's trivial discomfort, we are all different, but clearly we are each having different sorts of pain, either that, or we have very different response to it.

    We all know what the pain your referred to is about... we all have those reference levels to judge by: sports injuries, broken legs, that sort of thing... Chronic pain for me is NOTHING like that, yes, I still suffer acute pain of that sort when say for example I stumble or fall, and set things off, for me the level of that pain hasn't really changed over the years, so I can relate to that the way I always did... Yes, that is more directly "severe" than my day to day pain, but it's not the same feeling at all... it is a different sort of pain - like a burn is different to a sprained ankle - but it settles and I get over it, unfortunately nothing gets rid of my underlying chronic pain (it goes up and it goes down too), and as daft as it sounds, at times is even more self-occupying than those forms of acute pain!

    When you say it doesn't work, I am ever further from understanding you - for me it DOES... I am fortunately VERY responsive to Opiates (with the side effect that I seem to "burn it up" somewhat quicker than most.

    I consider myself to be extremely pain tolerant, and take analgesic dosages that are at an absolute sub-minimal level, (to the point that I have found Doctors haven't taken me as seriously as I would want them to, they thin it is more trivial than it is!)

    I have rarely if ever been "free" of pain, going to that level of analgesia is unrealistic, and would soon require an increasing dosage to maintain, but it has taken me over 15 years before I have increased dosage - I would be long dead by now if not for pain relief - if not suicide (and I have thought long and often on that too, even with analgesia, and have always kept the MEANS to do it, even now) - but sleep for me is barely possible at all WITH such relief, I don't have a choice there,without I get ZERO sleep, and on that alone I would be dead, as serious sleep deprivation is a killer, and it very soon becomes serious - as it is, lack of sleep alone has made me more ill on several occasions, it becomes very scary surprisingly quickly. I have very rarely had to take additional pain relief during the day, it has almost always been overnight, and it is surprising that however tired you become, even after a few days of deprivation, sleep longer than a few minutes at a time is simply impossible when the pain is bad enough.

    Yes, Opiates have SERIOUS side effects, some of which I measurably suffer from, and need treatment for, but I am at least 10 years older now than I would have ever got to because of them.

    Life is good to have, but QUALITY of life is more important to me than sheer longevity, I haven't always got the balance perfectly right, but long term extreme suffering is not a positive life experience.

    You also assume far too much about how our heads work... mine is clearly NOT the same as yours, and never will be, that doesn't mean I can't adapt my thinking of course, but because I cant' get inside yours, and you can't get inside mine means that your method of dealing with the situation might not help with mine.

    You are definitely totally off the mark on one issue... people who become wheelchair bound or lose legs do not sit around moaning... dead right they don't! They suffer hell often. People in this sort of situation have an incredible rate of depression, even suicide.... my own father who was already not in a good state was facing amputation just 6 years ago and ultimately refused all treatment facing certain death... he died of organ failure as a result, and I know how he felt! When he felt his quality of life was untenable, he took the route out - he wasn't mad, just fed up. I can remember other vivid illustrations of this too, such as a PC who was shot and made paraplegic who dramatically blew his brains out with a gun... you are seeing too many young fit amputees that won gold medals in the Olympics... that's NOT the typical existence of such people I have met personally, and not the situation of older otherwise unfit people.

    I am definitely NOT anti "alternative" therapy, I have used it to moderate benefit for over 20 years, but my life's priority is making my life as liveable as possible, and using up what little "good" time I have on drawing pictures is rather like this... I have already over-used my "sitting upright" time writing this, and need to sit elsewhere to get some degree of comfort back, I don't have enough comfortable time to waste on something that will not bring me back some direct benefit.

    What works for you works for you, it certainly doesn't work for me, and I see little reasonable evidence that it would work for most others either, but I do see dangerous precedent in making the suggestion that your experience is some sort of everyday experience of people who are in chronic pain, people need to KNOW that our chronic pain is a BIG problem, hiding that is not going to help people get the help to cope in the long term.

  • Hi,

    I just wanted to say that yes I agree different people have different levels of pain. Different people have different ways of dealing with it.

    The mind is just affected by the pain as the body is affected by the pain. I think it's really important to look after emotional health as well as physical with chronic pain. I have spoken to a lot of professionals about this because sometimes I get really down.

    Personally I really want to achieve something with my life, I want to create something so that when I'm gone I will know that I have left something that has helped other's and has changed something. I don't think I would be fair to myself if I just stop because of my pain, even though it can be hell.

    For this reason, I really believe that despite the repercussions, the difficulty and the struggle it is important for people to try their best to manage it successful and oddly it starts in the mind. Accepting pain is the most difficult thing that a human can do. Living with it is extremely difficult but it makes a person stronger so why waste that strength?

    It isn't a case of mind of matter. It's not a fight. It's acceptance. To accept pain and carry on.

  • sorry I meant mind over matter.

  • Nice reply, and I agree with you completely, having the tools in your toolbox means you can plan better, and I believe that pain control is in the mind as well (to a degree) but if you've fought pain as long as I have had it surely makes you an expert and you are the one that knows what is best for you' your mind, and your pain, but sadly you have to live in the world where there are so many hills to climb, the metaphorical ones, can be as bad as the real hill's.

    But if you have to live with pain and to do it so you can cope better, people have to trust that it is you that knows what is best and allow you to manage your pain and give you the tools to do it better. but as it is never that simple living in the real world, for there is always people that think they know what's best and that your motives are not just what you say they are, for if your poor and that makes planning harder, but it also raises so many heads, so many heads full of bile, as inevitably money plays a part, so there are decisions to be made around true physical pains and be they real or not, which clouds the already dirty, dirty water.

    But it's worse there are more decision makers and assessors, and then there is the prescribers and the doctors all making your life bloody hell.

    and that's before the bilious lot poke their nose in, and then there is the looker outer of the windowers with their bile, that makes you tenser and angrier and then you loose control of your pain and it's now unbearable.

    So how do you get rid of the lot of them Hmmm'

    So sorry about that !

  • Hi Zanna,

    Thank you so much for talking about how you manage your condition. I am going to do my best to learn from you because you have so much wisdom about how you manage it. I am up and down like a yo-yo at the moment and I really think I need to find a better way, so some changes are on the way.

    It's human nature to not want pain and we are only human. The best way is to share our ways of overcoming it.

  • Lewitt, thank you. I hope you do take a journey of self discovery. Its hardwork, emotionally draining but so rewarding when your first thought in the morning as you wake is something other than pain. When you discover hidden talents, or learn new skills just for the fun of it.

    Don't get me wrong, I've ricocheted from wallowing in self pity, to despairing over being useless, to hating my body, my brain for creating the pain, to acceptance. I still get emotional, irrtitable but its ok, I allow it to happen. Its short lived nowadays.

    It does start with acceptance. I don't have any advice on how to do it. I just woke up one day with the realisation that its not going away. That fighting it will not make things better. That I should try building my life around it, and slowly push it to the background. It still needs respect when it's in the background.

    The pain has given me freedom. I choose when I work, I decide whether to take the camera on my compulsory daily walk, I decide where to walk. I have created a life that non-pain people are envious of. They don't have time to go for a massage every fortnight, they can't settle down to relaxing with aromatherapy oils. There's always a barrier. And I used to be like that, wishing I had time to treat myself. Now, I've got all the time in the world.

    We've started adapting the house as its always better to choose to do something than have it forced on you. I had a lovely new kitchen 3 yrs ago which has been specially designed to prevent any back damage. We've just taken the bath out and put in a walk-in shower, so I can remain Independent much longer. I have balance problems so only felt safe if someone was in the house. Its got a massage head and the shower is big enough for when I need a stool. I don't know if I'll need a stool to shower on, but there's no harm planning for it.

    I can't take any credit for the wisdom. Anything I've learned has been from exceptionally switched on alternative therapists who have taken the time to explain what is happening in my body when I have pain, and their solutions. Not all of them have worked, but I have stuck with the ones that do. Again, there is no fast tracking. Its just a case of doing each one for a few weeks, finding out as much as you can from the therapist, including what you can do at home for yourself.

    One thing I was told and it has stuck with me, the opposite of pain is relaxation. In chronic pain, the new default setting is pain. If you can get your body into full relaxation enough times, the brain does recognise it and over time it will set it as a new default. How many sessions, over how long, I don't know.

    Another alternative therapist said that the only way to truly combat my pain and switch the pain messages off completely would be to have a therapist working with me 24/7 treating each pain as it arose. And this is where my self management comes in. I have a mix of planned therapies and some I jump in and out of as needed. Its as close to 24/7 as I can get.

    Just chuckling at a feisty robin. 2 fat balls have fallen and he is chasing birds away from both.

  • Wow.

    I am impressed. I have not quite reached where you are. I do not take pain killers either. I still very dependant on my Alexander teacher and Chiropractor because they help. I know exactly what you mean because I attempt what you are doing not always successfully.

    I did tell an NHS physiotherapist that I was not going to discuss my pain or even look at it just recently. His reply at the end of his examination was what ever it was I was doing keep doing it.

    I certainly know about the tiredness.

    Keep up the good work.

  • Hello

    When in pain for a long period of time attitudes of those who do not suffer pain, i will say not always become bored with our complaints, they cannot understand the premis that chronic pain is an all emcompasing problem that many of us have to go through on a regular basis. They see pain as a transient condition that they can get over in a matter of days or weeks.

    Normally I know myself it is not only the pain but the tiredness that some see as laziness, they become less than sympathetic after a time and try and push their ideas of what they think you suffer, the phrase. If I do not suffer it in your way it fails to exist, so they think we do not want fully intergrate into the healthy society so the feelings that we are pulling the wool over their eyes is transmitted throughout the healthy society.

    One of our problems is when we have too go to reviews at hospital we normally have someone who knows, need I say professionally, so we fail to to reiteratrate what the problem is we become blazey and less than forthcoming about our conditions because we have said what is wrong with us so many times before, we worry after this appointment if we have said enough to the doctor how we are feeling at that time, because we get concerned that wrongly that we are niggling about our conditions, even though we are not.

    One problem we have is if the specialist is new to to you they do not really know you and you have too start, or so you feel all over again what is wrong and what stage at that time you are suffering, you become a trainer in your illness. This has happened to me after having three doctors that are unknown to me, especially when they cannot find your main notes that have gone missing. You become gagged, because there is so much too say and so little time to say it, the doctor then wants to start a series of tests that have been done before. so many times

    Now we in public try and hide our problems, we say nothing, we are boring and do not want to rock the boat, this is wrong we are what we are we will not change that as the able are also they are what they are so acceptance by both groups has to be entailed, we are all the same just with different life paths

    All the best Bob

  • I tend to suffer the opposite... it's making me wonder if I should whinge a bit, deliberately - despite walking with crutches as an obvious visible reminder (instead they must think they are some sort of fashion statement), they think I am 100% OK and when I do have to severely limit my activities (actually activity, singular! I only have ONE remaining, and I struggle with that, even with help!) I get odd looks, or more, and get made to feel as if I am just copping out!

    In some ways, I am not complaining: I am 55, but despite feeling much older than my Mother at 84, when I look at the state of schoolmates and even though I am bald and grey as a badger I don't think I "quite" look THEIR age either. I put it down to being a bit fat, it means less wrinkles, and despite having lousy genetics, most of the family seem to live donkey's years, but are ill from 50's, whereas I have been clapped out from mid 30's. (My Grandmother's Doctor described her as having "Creaking Gate Syndrome"... I think I need a touch of oil too) ;-)

    Even my GP seems to think I am doing wonderfully: when I mentioned the problems I was having just doing basic domestic things he said "What do you mean?" Seeing as he is the one prescribing me the strong Opiates, and a bucket-load of other stuff for a long list of other conditions that never go away, just sit in the background I would have thought he would realise they don't restore anyone to normal function, just take the edge off the pain. I despair sometimes :-(

    Maybe we should all SPECIFICALLY moan more, if only for effect, or treat it like when trying to desensitise an allergy! Even if it doesn't bring much direct benefit perhaps it will stop us being ignored - as you say, people don't take even the slightest comment very well, it's as if they record every comment you make and save them up for later; but maybe it's better than suffering in silence.

  • Hello Picton

    The squeeking gate strikes again, we all need the penetrating oil

    BOB

  • Oh... I do have a response for someone who REALLY can't see what the problem is....and you do get them now and again - so to illustrate it, I challenge them to a race!..... tell them I'll fill their socks with a broken up bottle and first one to the end of the street is the winner - It wouldn't be a very quick race, but it illustrates the level of pain I suffer every day in a way they might understand - and it's one race I know I could win as I can handle that level of pain better than they could, after all, I've had a LOT of practice! :-(

  • They don't see us at all. They see a snap shot and if they treat a lot of chronic pain, I dare say the snap shot is particularly fragmented. I struggle with health care providers because we all come to realise the limits in which they operate and the little they can they do after all to help even with the full picture in their sights? Of course we focus on the pain in their eyes - isn't that what comes to define us? Even with friends, family, strangers what a narrow view they take. The pain aside, what I hate most is the cold heart I've acquired to shield me from the pain of others insensitivity.

  • Picton, no offence taken, this is a forum for discussion, all views should be equally accepted and respected. If not understood then clarification should be sought. Because we are not face to face, its sometimes best to push the boundaries a bit to get people thinking and talking. Nothing I say is a personal attack and it is usually based on my own findings through my journey with my pain in the life I have chosen to live now.

    I can only talk about my pain. Its the only pain I experience, its very real and very present and evident in the subtleties of how I sit, walk etc. And I am going to focus just on it right now. As I sit here, my left leg has pins and needles and a sharp pain shooting down to my ankle. My right leg is numb. (I call this pain Selena and it required pain killets for ablout 3 werks before it setyled to a level I could manage without pain killers). My sacrum is firing what I call electric shocks accross my buttocks. My coccyx is swollen and the pressure feels like I've been beaten up with a tenderness and bruising sensation, made worse by the back of the chair . Both shoulders are aching and are worse when I move. My neck has a sharp pain shooting down my spine. In all I would give these pains 8/10.

    I am going go and meditate for 15 minutes (change my brainwaves and focus on my breathing only, shutting everything out sounds, thoughts, smells, vision).

    Right, am back in the same chair, all pains are still there but less. Just now I'd give it a 5/10. This will last an hour or so. Not pain free but bearable and it has been moved into the back ground. Longer meditations cause longer reductions, and increased frequency causes more reduction. Its just a case of topping up the changed brainwaves at a frequency that suits your pain.

    I consider a score of 3/10 to be pain free as that's about as close as I get to being pain free.

    Its taken me 11 years to learn how to read my body and work out the best combination of strategies that suit me. I am going to get worse as I get older and I will need heavy duty medication then. I don't see any point in building up a resistance to pain killers now which will mean when I am older I will need stronger than expected. Especially as I am so in tune with my brain and body.

    It might well be that opiates are the best thing for you, and you are happy with the results, then go for it. Only you can decide whats good for you and you are in control. Your drs sound like they know what they are doing. Mine told me there was nothing they could do. So then its up to me to find a way to live with pain.

    I am really pleased I have been given a chance to learn how to control my brain with meditation, diversion, anything that fills the synapses with happy hormones than be a slave to a pill box. It has enriched my life despite the pain. The best thing I did was accept the pain and stop looking for cures that don't exist. Only then could I move on and live my life, not in the way I had planned many years ago, but in a way that my body can toletrate now.

    This pain is the worst thing that has happened to me. I am stuck with it, but I'm going to live my life the best I can within its confines. That for me means seeking out happiness, being positive and using my brain to control the pain. As long as these work, then I will continue. I do get depressed, emotional, fed up but it is short lived and I accept it when it happens.

    As Rbell says, non pain people have no concept of the all encompassing effect pain has on you.They have no concept of the fine line between being ok and not, and how easily we can cross it without thinking. Nor do they appreciate how we can do something one day and not the next just because energy levels are not the same.

    Perhaps educating the public and health professionals is the way forward rather than moaning. (I can't help turning things into a positive, I do it automatically without thinking and I know its annoying - I have been told ;) ) afterall we all know the effects of moaning do not get the desired results.

    Respect to teadrinker for opening up the discussion. I used to work in the NHS and have gained insightful knowledge about my condition and pain while there, and have followed many patients through various treatments who were experiencing all sorts of pain for whatever reason. I have made an informed opinion that medication generally does not work as expected, that further medication is often required to calm side effects. I have noted whether people are better after a course of physio or not, how many people found counselling helpful etc. I maintained the database, so although I did not have direct contact with them, or knew who they were, I had all the info at my fingertips. The results helped me to decide to go down the alternative route.

  • Hello Zanna

    We seem to be the same regarding non productive chronic pain it has taken a long time to get where I am now, would be a basket case, if I had not taken all the courses that I was given, I have now been able to use both Alexander techniques and Maxwell techniques in relaxation and have learned to slow pulse rate due to relaxation. many think I am sleeping

    Thank you

    BOB .

  • Smiles :)

  • Phew, I didn't think there'd be this much debate on the topic. We all have different pain experiences and different ways of looking at it, no one is right or wrong. Whenever I post anything on here I am mindful of the fact that I am at a certain point in accepting / dealing with my pain and that my views aren't going to be the same as everyone else's. If it raises a debate then fine, I don't intend to cause upset.

    In theory there are things that should work on pain but in reality the whole thing is so complex it's never going to be simple.

    It shouldn't matter at the end of the day, we all do what we have to do.

  • Great response to your post - really enjoyed reading all the responses with a cup of tea in bed this morning and doing my utmost to ignore the constant pain in my face and head x

  • You can't win, nobody but nobody that lives with chronic pain, know's what it's like, and believe me I know pain and I take a strong pain type medicine that gives me a 4 hour reprieve each day, and now after living so long with my pain , my battle is now to put to the back of my mind what people think , OH and do they think, and do they think, and always the nudge nudge wink wink, ah yes you have pain in your, ? what does it feel like where is it ? knowing full well that skeletal pains are very different and depending on your movements that day or the day before, so any answers sound like you make them up.

    So to all people with pain in your body,deal with it in your own way ,and do not worry what people say or think, for they will say or think whatever you say, and like my doctor said, you have your san's to prove, and the xrays, and I get so angry when I hear people having to defend themselves for having chronic pain.

  • No one would have to defend themselves for having a broken leg or cancer. Alright, so chronic pain probably isn't life threatening for most people and some might say I can't compare it with cancer. But what I'm saying is that chronic pain is not a high-profile condition, it's not, for want of a better expression "sexy". There aren't going to be TV programmes about pain clinics when they can make programmes about brain surgeons or hospital emergency departments.

    We do have to get on with doing what we have to do to live with it, and ignore misguided comments. Or begin to talk about it in a way that may be helps other people to understand a bit better.

  • Yes teadrinker, you can go on all day about the problems arising from pain, and I always have a problem when someone offers advice, and anyone living with severe pains, (has done everything and twisted and turned their body into all sort's of Yoga like positions), especially if your avoiding these very strong and side effect madening drug's that I've managed to use as moderately as posssible, I expect your the same, and have day's where it's up and about day's , and when it flares up you move as little as possible.

    So when good people offer their advice ,I always feel bad because I don't want them to think I don't appreciate their advice, I'll end this by adding, thaat what help's me sometimes psychologically, is to think that there are people worse than me, and I'm lucky to have some really good people believing and supporting me, people that have went with only a thank you, but work tirelessly in our corner on our behalf (at least in mine) and I must use the very important input I've had from them ,and to say that most of the time I waffle on and on ,as a means to cope, as I expect other people living with chronic pains have, and it's nice to show those people helping us that we are not just moaning minnies , we do rely on all they do on our behalf and are thanfull for it, best wishes to all

  • Someone else has the precious time slot like me! It's so good to hear all of these discussions, and each person has to find their own path.I like your sentiment "You can't win"... the war but you can try to break it down into manageable skirmishes! Personally, I have a blend of both Zanna and Pictons ideas. I can bring my BP and pulse down to abnormally low levels with relaxation techniques for the acute times, but generally still need to maintain a drug regime to have any active daily life. I've gone from being a very active teacher into wheelchairs and sticks existence and still feel embarrassed to admit that I'm now disabled because of other peoples lack of understanding.

    I did have a recent experience that proved my pain threshold, when during a podiatric operation (one is conscious throughout) the pressure machine that numbs the foot was failing and although I mentioned it, it was better just to let the surgeon finish. Only afterwards did they realise that I had felt the whole thing! Apparently the GP heard and immediately offered to review and increase my meds etc. I would not recommend anyone should have to prove their pain like that but there are pregnancy vests and obesity suits that each and every med student should be made to wear - why not a pain suit, preferably for at least a week, 24/7?

  • Normaly I do not talk about the pain I get as I know unless the person you are talking to has been there then they have no idea how bad it can be, if it is a doctor asking about how I am I now explain it with reference to my pain diary I have accepted that the pain will never go away for good but if I can get a few more days when the pain is low I am happy with that, trying to explain to people how bad it can be is very hard as it makes you think about the bad times which I try not to do and can make me extremely upset I have always said it is better to remember the odd good days than the weeks of bad days, at least i am still alive which is better than a lot of people.

  • A fascinating article. I find that (often fit and healthy) people who speculate about our particular chronic pain and have never suffered it themselves, might just change their minds if they spent a day in our bodies! I wear BuTrans patches; I'm constantly being asked if I'm trying to stop smoking. When I tell people I've never smoked, they give the patch a funny look and walk away bemused!

  • Really enjoyed reading everyone's comments regarding pain. For me , it is encouraging to see that I am on the right track in dealing with things. I love the fact that we have a forum like this where we can offload. We all know exactly what is being spoken about. Good luck everyone, looking forward to lots more discussions like this. Ann

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