When should I stop screaming? Why do they look at me as if they don't believe me?

Not so much a question or statement, more of an open invite to comment.

Ive suffered from chronic pain for years and in that time I have been through many doctors and many different pain medications. I often feel that I am being judged, that I am not being listened to and I also feel guilty for asking for more/different pain medications. The reason I feel guilty is that I have often asked myself the question..do I NEED painkillers? Am I masking the pain or am I overmedicating? Should I be taking less in order to feel the pain more? A comment that I often receive from medical professionals is that I dont 'look' like I am in pain. This is a really heartbreaking thing to hear, as a patient it totally removes all my control and power. I have effectively 2 options, I can take painkillers to a level which enables me to live a reasonably normal life, OR, I could take less, in which case I would suffer more and people would see that suffering. This is what makes me ask the question- when should I stop screaming? At what point is it 'enough' pain relief? Why should I feel guilty because I dont want to live my life being pitied by those around me, and because I have made that choice, I feel guilty when I discuss pain relief. In some ways I am lucky, I have a physical problem which can be seen on the outside ( under the bandages ) and if a doctor was to take the time, they could see the history of the problem and tell it wasnt imagined or exaggerated. However, none of this makes me feel any better about it. I feel guilty for making those around me feel sorry for me, for making them pity me and so I hide my problem as much as I can, but on the inside I want to scream, I want to cry, I want to break down and show everyone how it really feels. But then, I feel like I really would be exaggerating the problem. Because I have the ability to take painkillers and to mask some of the pain, I have that ability to conceal the problem. This is the problem, it is wrong to live in pain and yet if I mask the pain, I am judged as having no pain. Simply, people expect someone who is in chronic pain to be crying, screaming, begging for it to stop, but when do you stop screaming? You cant live life screaming and you also cant live life trying to hide a major physical problem, so what is the right thing to do? And why do I feel guilty for asking for better painkillers? I dont think there is an answer, but I just wanted to get it off my chest since maybe I am not the only one to think that way.

36 Replies

  • Hello BOB here

    When we are in chronic pain the that becomes part of you this type of pain is selective and personal to how you suffer it. We could put someone in the same room with you, they are suffering the same pain as you their condition is the same as yours yet both of you will associate that pain differently, so what would you say to that person, you are you not as bad as me, remember that person is exactly the same. How would you now associate this persons pain.

    All chronic pain is a non productive pain it is not associated with acute pain,say you have stumped your toe or have toothache, with this the body is telling you you have hurt me, look after me I will get better Chronic pain is opposite to that. It is personal. like a nagging child that keeps you awake all night screeching in your ear. It demands your attention.

    When we suffer chronic pain it will slumber in the background and flare like a fire next day,it will whisper in your ear , and wake you up to a condition that demands attention

    One thing you need to understand this, you will never cure it you will never fully control it all you will do is suppress it.

    Now you are beginning to understand it you realise that you at this time will never cure it.so you at this time will begin to want to control your condition. This is why the GP will send you possibly to a Pain Clinic,here you will understand how to use a Tens machine learn pacing and be shown how to relax and control your bodies non productive feelings. Also they will introduce you to different departments who will help you control this condition with exercise and injections etc.

    You will become well known in different departments as you proceed to try and control this bad mannered lodger.

    After a time you will eventually sort out the best drugs to use and the exercises that help release those stagnant problem areas, you at this time will never completely rid yourself of chronic Pain. It took five years to find medications in my case THAT WILL SUPPRESS, and not cure.

    Now you should be in a position to negotiate your pain, and that is a real art, where the medical profession trusts you to manage your medication on a daily basis, and in some instances negotiate your treatments, you are now managing your pain. It has become a part of your life, sometimes it will become very tiring, now you become needy to other people to help you reach that Holy Grail that sits just in the foreground that will possibly never be reached.

    So what should you do regarding this??

    When you are talking to people or friends and they ask what the problem is, tell them, although do not become a boar your family, wife are going to be able to support you.when you need assistance.

    A good friend will be the occupational Therapist, prezzies will be offered to help you do those jobs in home and out, not forgetting bathing..

    Other departments will assist your employer if at work to make conditions beneficial so that you can do your job.

    So putting this on the shelf I would having forgotten something I suppose remember do not be a bore, Also do not feel sorry for yourself, you are what you are, live your life if some people do not like it so what ,you are stronger without them. Life your life. You have a disadvantage live with it. People who love you will stick by you and those who will use or have no patience is best left alone.

    Here is thirty years experience, should be well paid for this LOL




  • Bob, that has helped me more than you could know. Thank you.

  • Hi Bob, well written the above you, i would have said exactly the same as you have. I have to go to all the clinics, doctors, specialist, hospitals quite regular and as a long term patient they all get to know you, I have seen some of the desperation in some of the blogs on here and my heart goes out to them, sometimes you do feel as if nobody understands about pain because it is invisible. I have to say you do have to be a martyr to yourself, I woke up nearly four years ago in so much pain in my back I was struggling to breath I was rushed into hospital on a stretcher, I was house bound for eighteen months, eventually I started to walk again on two sticks couldn't walk to far so i also had to use a wheel chair. The doctors at the hospital told me I would not get any better than I already was and I must try to accept it, that was two and a half years ago, through a lot of tears, hard work, and determination to prove them wrong now I am back driving and walking with one stick. I still have some violent days at times but when I am at the hospital and see people who are where I was in the early days I feel obliged to speak to them and tell them not to give up. I hope my little story will give someone some hope. so good luck to jaycee .

  • Oh yes I agree so much that Pain is a great learner, it soon teaches you and eventually you (on some days) you'll manage better and plan better and therefor you will be in charge, at least some of the time, and you plan your life around these times, Oh and what you can't do without, is good pain meds, these are essential to manage and plan and of course your Independence depending what you are able to do, all the best, and I know it's a struggle best Alex

  • Hi jay

    I cou

  • Hi j frame here,

    I could have written the same post word for word. You are not the only one!

    You describe exactly how I feel and I struggle to get a balance on when to ask for help as I'm told by many I don't look as if I'm in pain but that's partly because I don't go out when it's really out of control. Trying to cut my meds so I can get back to work as I have been off for a few months now and worried will be told not fit for job (have been warned if off sick again) but need to work to get outside contact with people and try to live a normal life, with limitations. Need meds to reduce pain and improve mobility but they play havoc with memory and ability to think! Catch 22.

    Thanks for sharing so good to know Im not the only one.

  • The Catch 22 situation is a massive circle and I really hope you can find the right balance. Everything seems to be about balance, balancing ability to operate as a person against the considerations of pain. Balancing work and home is important to having a good quality of living but unfortunately some employers are not as considerate as others. Personally, my employer was not very considerate, I spent a lot of time in hospital and recovering and trying to be available to work but in the end, despite being one of the longest serving employees, they eventually decided to make 1 person redundant and the specification they used to decide who it should be could easily have come from my CV !!! Since then I have struggled with trying to cope with the pain and trying to cope without work. I want to work, I want to work, I want to work, but I cant find an employer who can cope with me having hospital appointments 2-3 times a week and others when required. Without work, there is little to keep my mind off of lack of money, pain, suffering and lack of ability to change things. I have tried to find things to fill my time but have NO idea where to find out about activities or things that I could join in with. Thats the circle, from struggling with the pain to struggling to deal with the physical, emotional and personal effects it has upon life.

  • It is a struggle but it's also a journey of self discovery. I chose the alternative route and havea huge amount of knowledge specific to my problems. I have a carefully planned routine (cp loves routine) where I do all my exercises, treatments, relaxation throughout the day, things each therapist has said will help either physically or mentally.

    People say - why do all that stuff when it only takes the pain away for an hour or so? well that's more than I got with pain meds, and more importantly, if you can't treat yourself to an aromatherapy massage when you are in pain, when can you?

    I love the freedom I have now. Yes, there are many things I can't do like bungy jumping, potholing etc but they were never on my to do list anyway. I take my time and work out new ways to do old things, in a way that mybody doesn't scream out. I work when I want, have no worries about appts - they just need a bit of planning into the week. Pain has enriched my life, I've learnt new skills, new ways of living, created a job, and am generally happier than I was in a 9 - 5 job with little time for myself. I am important to me and I need to look after me in all my dimensions, nobody else can do that.

    I became self employed making things from textiles which I sell and provide a sewing service to the community. This journey started with 5 min sessions sitting at the sewing machine working the pedal. Now I can sit for 50 mins. Did I know I was going to suceed? No, but I was sure going to try.

    I concentrated on my own fitness and stamina so much so that I have not lost any of the muscle mass I gained from ballet and cycling in my younger years. Everyone professional I meet is astonished that someone with my condition is so fit and toned. But this didn't happen overnight either. I started walking in 20 min sessions and now manage a comfortable hour and a bit.

    Yes its sometimes a chore to walk everyday, or do my wall press ups, but that's what my body needs and is used to. If I don't do these things now, it complains with a huge amount of pain.

    I found meditation very helpful. It calmed me down, cleared out unhelpful thoughts, made me concentrate on the now. All we have is now. I do 2 types, one for the pain where I imagine the pain as a colour and change the colour to switch the pain off, and a general body scan relaxation.

    I also pushed my body to its outer limits just because I needed to know what would happen. I walked right on past my 3 mile limit, up to 6 miles. It was strange in that my stride got smaller and smaller (my body slowing me down) and my shoulder started locking (my body sending an urgent pain message) and finally both my hips locked. Some may say it was a stupid thing to do, but the way I see it, there may be a time when I will have to walk further than my comfort, I need to know what will happen and how long it will take to recover. It took me 2 weeks to recover.

    I do lots of things that make me happy in the day, sort of topping up on all the alt therapies and home strategies. Simple things like watching the birds fight over the fat balls, taking photos and editing them.

    Jobs are tricky to get and keep, thats why I became self employed. Local councils run all sorts of business courses, and you can get funding towards private courses. They are good for networking and finding out what's going on in your community. I don't know what your background is but people need book keepers, you can do this at home in 5 min sessions if you want, at 3 am if you can't sleep. As long as you over estimate the time it takes so you deliver on time people will hire you.

    CAB can help with lots of things. There are plenty social enterprises springing up that employ disadvantaged people in a way that suits the person an hour a week to full time. Even joining something like the wrvs will give you something to do, they have people in talking and demonstrating and you may come across something you can do yourself. It's not all jam making these days. I would advise that if doing a craft, steer clear of card and component jewellery making, its too flooded these days.

    Wanting to scream is good. Its the anger coming out. When you have cp you go through the mourning phases disbelief, denial, anger, acceptance (maybe one missing) for the person you were and the life you thought you were going to have. Remember family and friends are doing this too, and misunderstanding and lack of compassion comes about because everyone is at different stages in the process. Let it happen, its part of the healing process.

    If you want changes in your pain perception (mine slumbers in the background) then you have to make it happen. Its not all plain sailing some therapies may not work as you hoped, but you got valuable info and may ve a strategy or 2 that do help. Move on to the next one, then the next one. Some may as part of the process make you worse - tight muscles that are persueded to relax tend to panic and tighten up again, this can take a while for the muscle to accept thst its ok to relax. But its part of the healing process.

    I delegate a lot to my family and thankfully they co-operate. We have housework parties with hot choc, donuts and music, and we are all working together for an hour or so every week. You put the right spin on things then people want to help. We have very little time as a family but by all sharing the housework we can catch up with each other and nobody feels they are helping me because I can't do something, by dividing it up, I'm doing my fair share. We do garden parties too, and cupboard tidying ones, infact any mundane job is turned into a party with music and treats to help it along.

    I always try to turn things into a positive, its good for everyone, not just me.

  • Zanna your a darling, and so much writing and great advice, if anyone knows it's you, keep up the good advice, best Alex

  • You're brilliant !

    Thank you !

  • Zanna, that is wonderful. It is great that you are able to push through your pain in this way and find alternative ways of coping.

    You are right that there was a morning phase missing and I would suggest that it is maybe grief. It is grief for the things we wanted but now cannot have, for the things we planned but are unable to do. I do indeed try to find alternative ways to do things and try to push myself to acomplish things that I am able to do myself, I have done a lot of things that people do not believe and it amuses me when I show them the proof. It is great that you have found a version of self employment which works for you. From what you are saying, your point is that it is very important to push yourself but also to have the help and assistance from those around you. Unfortunately this is where I am unluckier, it sounds like you have family and friends who are there for you, understand your needs and help you a lot. I wish we were all so lucky. My own pain stems from a condition that does not enable me to exercise, that doesnt mean I havent tried, I exercised as much as I could manage for a long time and it did indeed make things worse. I know there must be something I can do, I WANT to do it, I WANT to be a productive member of society and get back in control of my life. I also feel as if I should be able to do this on my own, I have tried, I really have but with little success. Now I need help, I am finally asking for help, begging for someone who could maybe help me get back on the right track. I do not expect a miracle, I just know that I need help but I have no idea where to turn. I have tried everything I can think of but to no avail.

  • hi JayCee73

    There are ways of doing exercise. Blind faith and ignorance is not one of them.

    Often chronic pain comes with muscle knots. A muscle is made of hundreds of muscle fibres which work together when a muscle moves. Sometimes what happens is some of the muscle fibres become over contracted (muscle knot). This prevents the muscle from working without experiencing pain. The pain experienced came be large. You have to work to remove the muscle knots.

    This is where it becomes difficult. An NHS physiotherapist knows very little about them. A masseur knows a lot about them. Some Yoga teachers know alot about them. Alexander Teachers teach you ways of not over contracting muscles.

    My chiropractor which I get on the NHS once every six weeks as part of her treatment stretches my tense leg muscles.

    When a muscle is over contracted it prevents nutrients going to tissues and prevents waste products from being removed from tissues. So trying to do endurance exercise with a muscle knot is going to lead to more pain and is not productive.

    Working on a muscle which has gone into spasm is painful. I have had someone work on my muscles several times to remove spasm. It is painful but the freedom of movement afterwards when the pain has quietened down is worth it.

    Look up Alexander Technique. Find a Buddhist group who can teach you meditation and mindfulness. Try a local yoga class which is beeing run by someone who understands pain. The resources are out there on the Internet. You just have to look and try and build up a database of what works and what does not.

  • As with Zanna, John my friend, your advice is as ever spot on, as I myself have been fighting this very thing around muscle and relaxation and learning to manage it in a way that brings relief .

    If I have learnt anything about living and coping with pain and that is "relaxation" and allowing so many muscles to work in tandem and how mental concentration on the muscles can help you over-come even nerve pressure as the muscle can take pressure of the nerve and if you can do that then you will know what muscles to concentrate on in helping to keep the pain manageable and maybe stop it getting worse.

    But I know we are all different and that is the problem ,for the professionals in pain management must scratch their heads, even on different days the willpower you can use differs, and it is frustrating , because the mental process must act in sync with the body to get the best from your efforts at managing your symptoms and pain.

  • Thanks for the reply.

    Have you looked at the proprioceptors and how they function?

    The proprioceptors feed into the spinal reflexes. The spinal reflexes modify muscle behaviour all below the ability of the subconcious to pick up until after the muscle has made its movement.

    Have you any thoughts on this matter?

  • Not at the moment, but will look it up, but it makes sense, but I would have thought that the subconscious is only a monitor of the conscious , but I do not know enough to give an answer fully, as I'm only a novice in these matters, but will do some research into what you say and get back to you

  • subconscious and conscious can be very confusing. I certainly find it so.

    My understanding is that the propioceptors feed into the spine. The input creates a spinal reflex. The input effects may or may not travel up the spine to the cerebellum. So it is quite possible that the cerebellum is totally unaware of some of the spinal reflexes effect on movement.

    I may be right on this hypothesis or I may be wrong.

  • Did you get the help?? I hope so. I'm fortunate really I have good friends and family that understand that when I'm walking after a little while I need to sit down. I do try to push thru the pain BUT it can cause a spasm which then I'm tied to the house for a few days... So I don't push it, as I'm relied on to fetch grandchildren from school etc. so I carry on doing what I can. I think I've never gift past the grieving of my loss of what I used to be able to do.. I am under pain management but they've left me linger than the 6 months for my epidural pain relief and i could cry... But there are people a lot worse off than me. At least I can still go out and I adapt my day to how I feel. I still keep thinking there will be a miracle one day and I'll be completely pain free but that's not gonna happen is it. You take care... Xxx

  • Jaycee

    Few people know when I am in pain because I don't talk about it or "look like it" - in other words I don't look like or behave like what most of the population assume someone in pain would look like or behave. So I think this is a real problem for lots of us suffering from chronic pain.

    Sometimes it helps to hide the pain because it means I am not treated any differently and it makes me get on with life. But sometimes you need to tell people how it is otherwise you won't get the help or support you deserve. You shouldn't feel guilty for wanting better painkillers and for wanting the pain to be less. I was once told that there was nothing more that could be done done for me and it took a lot of courage to go back to my GP and ask for more help - and more things were tried, with success!

    I read a book a few years ago - again, it took a lot of courage to read it because I didn't believe it would help - called "Overcoming Chronic Pain" (I have seen it advertised on Amazon) It gives step-by-step advice on setting yourself little goals and how to break things down so that you can achieve them easily without burning yourself out and adding to your pain. It also has some suggestions for managing set-backs. There are examples in there including people who aren't able to work and people who feel really stuck. I'm not saying it sorted out all of my problems but it gave me some ideas.

    Remember what you are dealing with - chronic pain is a slippery beast, you are not going to tame it all at once, and even when you do get it under control it often turns round to bite back. So don't feel guilty, and keep chipping away at it.

  • Such great comments from everyone to this post. So many truths. I'm only a year in now but I got better control of my pain when I stopped screaming and crying and started listening, relaxing, experimenting, and being strong and demanding. I take my meds how and when I need too. Some docs help but even the good ones aren't in your body with you so I learned to trust the signals my body sends me, rest when I need to if possible, stop trying to be my old self and discover what my new self is capable of. No one can see my pain but if you don't carry on like a maniac, though its tempting, the docs at least will take you more seriously. And though I never give up on the idea of being pain free because I believe its possible I accept my condition and spend a lot of time thanking god for the things I can do and for what I've learned from my condition like empathy and gratitude. Good luck

  • Hi Jaycee, Coincidentally, if you look at the PainSupport site, this month's newsletter is featuring 'being believed' and how to cope with not being believed! Good luck with everything. x

  • My heart really goes out to you JayCee. There is nothing worse than pain (I have had chronic back pain for 39 years (where I had twins & they were bearing down more in my sides than my stomach, so the bottom vertabrae of my spine is crused) & fibromyalgia (as well as long term stress, anxiety and panic disorder). Dr's will never understand (nor other people who don't suffer). All Drs do is dole out med's. Unfortunately long term pain killers can be very addictive so that is probably why they are reluctant to keep prescribing them. I went to pain management therapy where they teach you to do things a bit at a time. I was given a manual & the most helpful thing was a pain/relaxation CD which I play at bedtime. I have also done stretches as soon as I get out of bed, and last thing at night for many years, so it helps to try and keep supple. I also bought a yantra mat (like a bed of (plastic)! nails, so I use that for 10 minutes at night. Other suggestions above may also help,. yoga & other gentle forms of exercise. I also had a few sessions at an Osteopath which also helped somewhat.. I think, because I have had chronic back pain for 39 years I just tend to get on with it! (& I do tend to overdo it, though sometimes it is unavoidable)! I got a script from my Dr yesterday for a pain cream (I have crippled knee pain as well)! Unfortunately, constant pain killers cannot be the answer because they are so addictive. Sending hugs your way x

  • There is a lot of mythology around addiction. If you take opiates for pain, one in three thousand patients becomes addicted. Definition of addiction=behaving badly to get more opiates. Most patients will be dependent, but rather dependency, at a safe level not damaging the body, than being in pain. All this means is that when the dose can be reduced it must be done gradually, as with many other meds, including nearly all antidepressants. Nurofen is far more dangerous, you have a 1 in 1400 chance of dying from a stomach bleed. Source Consultant Orthopaedic Physician of renown. Do not be puritan about pain killers. If you don't take enough new pain pathways can develop. Not good. You are lucky that you have painkillers that work for you. JayCee, it sounds like you are in mourning for your work and the life you thought you would have. This is normal. Let yourself mourn. It took me three years. I did come out the other side at peace with myself. The prejudice I get is usually from Drs who know less than I do, because I have been very well taught by my specialists. Do not push your self, physically or mentally. Stress makes pain worse. They have shown that if one is depressed one cannot exercise. When you feel able, exercise is important, even at a very low level, not even cardio vascular, but ask to see a specialist physio or just walk what you can manage, no more than every other day, so the muscles recover, and for no more than half an hour. This improves the functioning of your neuro matrix, which is faulty in pain patients. Five minutes, if that is what you can manage, and put it up 1 minute or 5 minutes every three weeks if no ill effects. This is what I was taught in rehab by top pain consultants. Gentle stretching or very gentle Pilates is good too. Get a private teacher who does not push you. Working gently on your core stability really helps. By the way, I know people think I'm odd because I look fine but don't work.. Yes, It's painful but one has to bear with it. I just say "I have chronic pain, car accident, it's invisible because I was born hyper mobile". Remember, they can think what they like but it doesn't make it true. Some people are very sympathetic, and quite frankly when I was in a neck collar I was that collar, no one, including complete strangers who approached me in the street, talked of anything else. I know which I prefer! Good luck.

  • Hope you don't mind me saying it but your in pain' you know it, and some people know it , and some people don't, and don't care, even if they would believe, for society today is more and more £'s and pence and now it seems so is your pain.

    But with pain you know you must work to fight it and no amount of painkillers can kill the pain enough, so you have to do it yourself and what the painkillers don't kill you have to find a way to , for the poor doctors are up against the wall no matter what they do, mine today reminded me about the side effects and it was her caring and believing me that done more for me than any pills,and yes I'm very worried about loosing my benefits but either way the pain comes first and the damage from the side effects on your mind and body must also, It's bloody annoying knowing people think what they do and sadly nothing will change them even if the pain was visible on your body, so all I can say is try not to look for disbelief on their faces and try and move as much as you can even if it's just a wee bit, sitting too still only makes you ponder too much, and the best of luck.

  • Yes they can kill the pain enough if you get the right Doctor and are taught and employ the right techniques. Fighting is counterproductive because it is stressful. Stress makes pain worse. You wont lose your benefits if your Doctor believes it would be dangerous for you to work and puts that in writing to them. Also if they want to interview you ask to see a risk assessment for your visit first. They are lawfully compelled to do these but don't, so will probably exempt you. Good luck.

  • I can so relate to what you have said and think the replies have all been very helpful in their own way. A specialist once told me that easing the pain was more important than worrying about the drugs I take and that I deserved to have a life.

    You have to do what ever you have to do to make life bearable so never give up and never feel guilty.


  • These are all wonderful comments thankyou.

    A lot of what has been said revolves around physical activity and exercise, I should maybe explain my reasons for being unable. The condition from which I suffer causes unhealing ulcers on my skin, which vary from a few inches to as they are at the moment where I have no skin on most of my lower leg. It is caused by an autoimmune condition which affects my skin and for which I take a lot of medications, painkillers, steroids, immunosuppressants, and a whole load more. I also (big surprise) have the areas bandaged, 4 layer compression bandage. Of course, the bandages rub against the raw flesh and that in itself causes pain but also exercising causes sweat and sweat causes infections which cause more pain. Its not that I am physically incapable of doing the exercises, but the act of doing them actually makes the condition worse. I have tried doing just upper body exercises but of course sweating isnt controllable or limited to what you are currently exercising!! The reason I say this is that I do understand when people suggest 'using; the pain or pushing through the pain or learning to live with it, but you must understand that the exercise is not just painful, it is actually making things worse. This, along with trying to use painkillers to cover the pain is why I was eventually banned from going to my local gym.

    This is not the only type of pain however, due to the nature of the problem and the length of time that its been going on for, there has been a lot of nerve damage which in itself causes chronic but pointless pain.

    This is one example of how there are 2 major different types of pain, there is the 'useful' informative type which our bodies supply in order to warn us that we are damaging ourselves or being damaged and there is the useless. nagging, relentless pointless type which goes on way beyond being useful and is what causes most of our problems. Sometimes its not so easy to differentiate between one and the other and sometimes there is no difference at all between them. Differentiation is so important, for those of us that suffer from both pains, we must manage the pointless pain and learn how to put it aside and live with it and accept it, but also must try to cope with the newer pain which is trying to be useful. Despite trying to cope with both, it is extremely difficult to cope due to difficulty with differentiation on a personal level and yet somehow it is expected that we can communicate things like this to doctors who frankly seem to have little interest in helping with the situation. I have found it SO difficult to try and ask for help with anything and so when it comes to asking for help with something that is so difficult to put into words I am even more lost. So, thankyou for your kind words of advice on here and thankyou to those people who suggest exercise and pushing through pain, maybe you now see a little bit better why despite having tried to do this in the past, I find myself now begging for help. For suggestions, for advice, for support.

  • Hallo, Jaycee,

    Your last post was really helpful as it tells everyone the real problem with your pain, and especially the reason for being unable to exercise. The answers above, especially Zanna's, are so helpful in many areas and really encouraging for those of us who need that little push to do more to help ourselves, but as Bob often asks - What are your actual problems/diagnosis so that he can give an informed answer. Now he, and we, know, and so we are here for you to scream at if you need to, and just to tell you that we do care, even if we cannot be of any practical help.

    I wonder which part of the country you live in? I am in Suffolk, would try to visit you if it were possible, but have only just started driving again after 25 months of being unable to. Thankfully my 88 year old husband has been brilliant, chauffering and shopping etc for me, but is now very tired and enjoying a much deserved rest.

    I am aware that my back pain is only "on hold" but feel encouraged by Zanna's very practical advice to do more to help myself, what a wonderfully positive person you are, Zanna!

    Lots of love to you, Jaycee, and please do make use of this site, the folks are all so helpful.

    My prayers are with you,

    Chrissy xx

  • What a kind thoughtful post Chrissy, if common sense were in a bottle then you'd be full.

    As for Jaycee73, me Darling, you really are suffering and only you know your pain fully, and only you know what you can do and when you are able, as you sound like you've been through it all, so a big X and Hug, (hope your not a man) if so just the Hug ha ha best Alex

  • Hi JayCee73- your original post is almost an exact copy of things i have written in my own personal pain diary several times. You are not alone, i feel exactly the same way and have had the same thoughts many times. I am actually very knowledgeable about medications and one of the things that annoys me most is how medications, in particular pain medications are demonised to such an extent that people with a genuine need are made to feel guilty about taking them. It's wrong. Nobody should have to feel guilty about choosing to take a medication that will improve their quality of life.

  • JayCee I know so much where you're coming from. I am in a v v similar situation. I fractured my spine a decade ago so to most people, including docs, I look "normal". I was on every painkiller known to (wom) mankind ! From methadone to fentanyl. I have a young daughter and it is so hard not to scream obscenities. Unless u have chronic, and I mean chronic, pain, then people just don't understand. They mean well but they have absolutely no idea. Sometimes I feel like an alien beamed down to a strange planet called Earth. I can honestly say that if it wasn't for my daughter then I would have departed this planet long ago. When she was a baby I watched in awe as her grandad ( et al) carried young kids on their shoulders and looked on in astonishment ! How could they hold that weight ? It is still incredible when I see it now ! I have just found out that Botox is back on the NHS so I hope I can get it in my back because it is the only thing that stopped the agony of spasms. Do not feel guilty about pain relief. To us it is not a crutch but a necessity. I have to drop my daughter off at school now but will comment further cos I truly truly understand. (Rant to be cont'd)

  • I'd say try alternative therapies and find out. Drs are not very good with pain, they are led by the drug companies to sell x amount of drugs for payments. None work effectively because they are designed for short term use.

    I rarely go to the gp - can't help my condition or my pain.

    Alternative therapies are very good, they relax the body and mind. None have made me pain free but some have got close. I feel better in myself as I have control, can choose the best therapy for the pain I have on a particular day. They also have a wealth of knowledge because they work with very ill people.

    Meditation works wonders. Changes the brainwaves to a different frequency and blocks out negative thoughts. Excellent to do if you can't sleep.

    Even Chinese drs are better with pain than gps. Get one of their massages is certainly an experience.

    I don't look like I'm in pain most of the time, though people who know me well can read it in my face. Anyway, not sure I'd like to look like I'm in pain. I certainly don't want sympathy, empathy at a push, but that only comes from the insightful and theres not many of them around.

    Take charge and do your own thing. You are unlikely to cause any more damage and who knows, you might like an aromatherapy massage with lovely oils, darkened room, soft music and soft fingers working on your back. An hour of relaxation may last a few hours. Go out and have some fun then there's no need to scream for anything let alone pain killers.

  • I have spinal cord injury, but not paralyzed. I am in constant, excruciating pain all the time!

    This book has helped me, you might want to try it. "Full Catastrophe Living."

    Good Luck! Pat

  • hi i have also been in constant pain for 25years following a R.T.A. i had over 100 hundred fractures was in hospital on an off for about 7years and went through 33 operations witch not all were sucsessful and still suffer from chronic pain which is getting worse because of arthritus and of course there is no cure so sometimes i am bed bound and can not do anything for my self so i know how you feel and where you are comming from.

  • Hi Bomber56, sorry to hear your terrible situation, you really are very brave and your an inspiration to us all on here, so my best wishes to you Alex

  • Dear Jay,

    Sorry for your troubles. I looked through my medical notes some years ago and came across this sentence....."pain seems to be her reason for existing". Help!


  • I feel that you need to learn to forgive yourself. I notice so much shame

    in your post. The best way to live would be to forget about what everybody

    else may or may not be thinking, and focus on just doing what you need to

    in order to live the life you wish. Comparing this to that and trying to guess

    what's others think is never helpful. You have come this far and I can see

    real strength in you. Be your own best friend and try to stop thinking about

    how the world around you is operating. Your journey here is unique and all

    the answers you will ever need will be found inside. Wishing you well.

You may also like...