Pain and medication in osteoporosis

Osteoporosis is often referred to as a ‘silent condition’ and often a fracture is the first symptom that leads to investigation and diagnosis of the condition. Pain is not a symptom of osteoporosis in the absence of fractures.
Pain is not a universal feature amongst people diagnosed with osteoporosis. We found that amongst the people we talked to the impact of pain on their everyday life and ability to do things differed a lot. It ranged from those who reported having no pain to those who experienced it daily. However, most of the people we talked to do take some form of pain relief medication. Many take the occasional painkiller bought over the counter while several have specific pain relieving prescriptions and hospital treatments for pain relief.
Many people were able to manage pain by taking painkillers that did not need a prescription, such as low-strength co-codamol and paracetamol. While some said they take painkillers as and when needed, others thought that it was better to be ‘ahead’ or ‘on top’ of the pain by anticipating the possible impact that certain activities will have on their pain level. So people would take a painkiller before going out shopping, walking or for an evening out. Others prefer to take pain relief at night to try and get a good night sleep.

Pat prefers to keep on top of her pain relief so she takes painkillers twice a day in the…

Age at interview 68

Gender Female

Age at diagnosis 54

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And what happens when you have pain on your back? What makes it better?

Well, I try and keep on top of the pain relief. I take my two pain-relieving tablets before I go to bed on a night and I take two before I get up on a morning. And then that keeps on top of it. it’s better to do that than to wait until it’s absolutely horrendous and then take them. So I find it easier to keep on top of them.

But apart from the medication, what else do you think helps? Resting?

Resting does, definitely. But I mean if I stand ten minutes, then I know my backs bad. And once I go and sit down, make myself a drink and sit down, then that eases it a lot. But standing does make it bad, really bad. I can’t stand much.

Well, I’ve just had to literally realise that I can’t do things that I used to do.

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Elizabeth only takes painkillers when she is doing something more strenuous or when she feels she…

Age at interview 85

Gender Female

Age at diagnosis 66

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The doctor when he came, when I first came back, he gave me two hundred and twenty four paracetamol tablets. In other words just take these, anything up to eight a day, and keep going. And that was that. Obviously if he’s going to give you all those pills, he didn’t want to see you again. And there was nothing he could do. But that then in a funny sort of way, was a sort of challenge in as much to say to yourself, Well let’s see how much I can do with these things [laughs] And then and that was that.

So when do you take them? When do you take your paracetamols?

I have only taken them when I have been going to do something. I mean on an ordinary day, if I’m not going anywhere far, if I’m just going to walk say from here to the post office in [town], just down in [name] road and back, I wouldn’t take any. But if I was going up to the city and getting on a bus and going up there and doing a lot of shopping, I would take them because I know that my back would be too painful by the time I got home. And I would feel too worn out if I don’t. So that’s the difference.

And how many do you take in a day?

Oh just two.

Just the two?

Just two to see you through while you go to town, if you see what I mean. And that’s it.

And do you feel differently?

Well you certainly feel more capable of doing the things you want to do because you’ve taken the painkillers. At the same time, you are notyou’re feeling that you’re not upsetting anything else by taking too many. I mean the doctors say to you and if you take all those of course you’ll be terribly constipated and this, that and the other. So I mean that’s another thing you see, well I don’t want to have that bother. So I just take them when I need, I feel I need to.

But if you stay at home, you don’t take them?

No, no.

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Many people were unwilling to depend on painkillers because they didn’t want to be seen as ‘pill poppers’, and the thought of becoming dependent on pain medication concerned them. Some people were already taking several other medications and others were worried about side effects. Several people indicated that they preferred to use external medication in the form of gels to alleviate their pain.
Notably, it was elderly people who were most reticent to take medication for their pain. Beryl said that she only takes her prescribed medication if the pain is bad. By not taking or reducing the number of tablets they take in a day the elderly people we talked to felt more in control and felt they were keeping their independence. Of course, the level of pain varied and a few elderly people eventually consented to have pain relief treatment.

Elizabeth attributes her dislike of taking painkillers to a generational thing and a way of not…

Age at interview 85

Gender Female

Age at diagnosis 66

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Oh yes. I’m just taking paracetamol.

Paracetamol? You said that you have a problem with taking them on a

Well yes I do. I do because, I don’t why, what it is but there’s a I think an inbuilt reluctance. Of people of my generation about taking things like painkillers.

Why?

I don’t know exactly why [laughs]. Whether it’s because we, it makes us feel inadequate that we’ve got to take them to keep going I’m not sure. But there is a sort of inbuilt. I think younger generations don’t have that. They don’t feel the same Oh why am taking painkillers I can live through this’ like we do. I’ve talked to other people here of similar age and they’re, they all feel the same thing, way. I know it’s silly. But it’s just something that happens.

I think it’s partly age. And partly that you feel that if you can cope without taking them, you feel better in yourself, in as much that you’ve. I suppose it’s this question of whether you feel absolutely in control.

And I do think that it isyou know I have talked to people about this here. And they feel like I do.
But when I talk to the younger generations like my daughter or my grandsons, they have a different attitude altogether, which is good. it’s better for them than it is for us because we’re silly.

it’s a question of it, I don’t know. In a way well I’ve lived until this age and I’ve managed. And oh I’ve done this and I’ve done that. And I’m going to go on doing it attitude. Instead of saying, Oh gosh it’s wonderful to take these painkillers and you feel on cloud 9 And it’s a stupid attitude. I know it’s a stupid attitude. But can’t help it.

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Cressida was told by her consultant that the day would come when she would need pain relief…

Age at interview 81

Gender Female

Age at diagnosis 62

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I did everything before that I do now. But I must say pain is very warying.

So were you?

I’ll tell you, I’ll tell you something that will just answer all your questions I think. The word can’t doesn’t exist in my vocabulary

So you were doing things despite being in pain?

Oh yes. And but that’s the thing. When I was in the hospital, not last September, but the time before, which was about eighteen months or two years previous, and it was an outpatient appointment. And I said to [consultant name], he started writing, you know we had the conversation whatever it was. And then he started writing out the form, that one takes to the desk to make the next appointment. And he stopped writing and he said, This is a ridiculous Cressida because I leave it to you when you feel you can’t cope, to ring up my secretary and we’ll have you in and see what we can to do help And I said, [consultants name] you know that I am never going to say I can’t cope [laughs]. He said, I know quite well that but I also know that I’m sad to say but the time will come when you can’t And last summer I really did think the time had come.

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Some medications do interact with one another making it impossible for doctors to prescribe stronger pain relief that could be more effective at alleviating pain. Several people were also restricted because of other illnesses. Ann has coeliac disease and has to limit the dose of codeine she takes and Rose cannot take Ibuprofen because of her Mastocytosis.

Dennis is unable to take stronger painkillers because he is taking anti-depressants.

Age at interview 59

Gender Male

Age at diagnosis 55

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And what gets you down regarding osteoporosis?

The pain.

The pain?

Yeah. You know, when I first was diagnosed with it there was no real pain. I had a slight backache because I thought I’d fallen down the stairs, but that went and as I say I just woke up one morning with this horrendous. I went to get up and the pain was excruciating from the top of my spine down to the back of my knees and my knees. I couldn’t stand. But with bed rest and Co-Codamol it eased it off a bitand there are many drugs that other people can take but I can’t because of my depression tablets. And so all I can take is Co-Codamol because they interact and one fights the other. So I probably have to bear more pain than most people would do. Well the consultant said that to me as well because of the (depression) drugs. I mean there is no way I can give them up. No way.

I can’t take other painkillers because of the Phenelzine for depression. I take Co-Codamol, Phenelzine, Lanzopine, Calcichew, and cod liver oil capsules. And that’s it. It’s enough [laugh].

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People who took prescribed pain relief medication commented that it can take time to find the medication that could effectively deal with their pain. Robert commented that in his experience it was a question of ‘trial and error to get the drug cocktail right’. In several cases people indicated that their level of pain has worsened and they had to be prescribed a stronger medication to help them deal with it. A few people commented that their doctors were reluctant to prescribe pain medication.

After seeing a different GP in her practice, Marylin now takes stronger painkillers, which has…

Age at interview 59

Gender Female

Age at diagnosis 56

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And how is your back ache now? Has it improved?

It’s still there but yeah, it’s still there, but I’ve been put on these painkillers now, and they are quite good. It’s made me a bit more mobile. But the ache is still there, but it is not as bad.

I did have an, just a normal x-ray on my back again. And she put me on these painkillers and it said to take two four times a day which I did, and I was so ill. I was so ill. But I found taking one a day helps [laughs]. But not eight [laughs].

Can you remember their name? Of the painkillers?

Co-Dydramol or something [laughs]. So I take them now. They didn’t do my knee any good at the time, but they sort of have made my back a bit more nimble, although the pain is still there. So there again that wasn’t my own doctor that prescribed those pills, because my own doctor isn’t very good at prescribing pills. It was another doctor, but I did, I had, and this doctor that prescribed them, also sent me for knee x-rays again. And I had my back done again and she said the knees aren’t too bad. There’s fluid in there of course. But she said the back is bad. So the back shows bad on the bone density scan and a normal x-ray. So I don’t know what’s going on in my back.

Did she explain it to you more, in more detail?

No because it was a telephone interview. She just, you know, she just says the x-ray show your knees aren’t too bad, but your back is.

And what about
And I said to her, Oh well, you know, I have got these painkillers and they are quite good I said, Can I have a repeat prescription when I’ve finished them So she did say, yes. Because as I said it wasn’t her that had prescribed them. She just told me when I went about my osteoporosis first of all to ask for the bone density scan. She had just told me to take paracetamol. So she’s never prescribed strong painkillers. But now I’ve started taking them, and they are quite good.

How often do you take them?

One a day now. Yes. One a day and that is quite good.

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Sheila needed to start taking morphine when other painkillers stopped being effective.

Age at interview 71

Gender Female

Age at diagnosis 66

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Which medication did he put you on at that point?

Yeah the risedronate tablet once a week. I was taking that plus co-codamol they were quite a strong tablet. Yeah, I was taking maybe two every 8 hours, every, you know, two for 8 hours. And nothing, you know the pain was still there. Nothing seemed to take the pain away. It was just terrible. And he did prescribe other, other tablets as well you know but I’m not. I can’t quite remember the names of the other tablets but nothing seemed to work with me anyway.

They were giving me co-codamol and then they were doing no good so they gave me morphine. I had the morphine injection. And I’m still taking the morphine tablet once a day for my spine because I still get pain in my spine because the vertebraes have deteriorated through wear and tear. So this is why I’m taking the morphine. It does help. And they’re, you know, they’re like a slow-releasing painkiller.

How do you take that, in the morning or the evening?

In the morning, yeah in the morning.

On an empty stomach or?

I take it on an empty stomach yeah before I have my breakfast, yeah.

What happens to you in terms of pain if you don’t take it? Can you tell me a little bit?

Well if I don’t take it I start getting terrible back ache, you know. And I mean sometimes I, if I walk quite a distance I’ve got to take other painkillers as well because it’s not. You know, I know the drug did me good, the Forsteo drug was marvellous. It works on me. it’s just that my spine has deteriorated through wear and tear. And if I’d had got this drug maybe sooner, years ago my spine might not have been like this. You know it. But it is a wonderful thing.

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People on strong pain relief medication commented that one of the downsides of it was the effect it had on their everyday life. They said that they felt dizzy and tired which made them more susceptible to falls. Moreover, Robert indicated that in his experience the effect of the pain relief started to wear off and doctors needed to prescribe even stronger drugs.
So with the advice and support from their consultants people tried to find a treatment that allowed them to strike a balance between a level of pain they could live with in return for a better quality of life. David said that he doesn’t want to be drugged ‘up to his eyeballs’.

Although morphine patches give more continuous pain relief they only take the edge off Roberts…

Age at interview 49

Gender Male

Age at diagnosis 43

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I mean in the beginning the pain management. After the operation within a couple of months the pain was unbearable. I was having nerve-block injections. That was the first thing to try and stop the nerves from literally jangling through pain. So that would work for about a couple of hours at most. And then you realise that nothing was controlling the pain. So I went from all sorts of different pain reliefs from, I don’t know, names like Tramadols and all the different ones. It seemed to be going up the levels like Oxycondin. And the pain treatments I was given were getting stronger and stronger. But what that was doing was making me more and more tired. So you, you have to find the level of me not feeling so tired but having some sort of pain relief. And it went on and on and on. And I went from the Oxycondin onto the actual morphine patches which gave me a more even level of pain relief if you like. What I used to find with the Oxycondin was it was peaks and troughs where I’d be, one minute I’d be sort of completely out of pain, next minute I’d be back to handling pain again, really bad pain. So we had to find a pain relief that would sort of give me constant pain relief. And this was where the, sorry the patches came in. I take Gavapenden for my nerve pain.

But when I talk about pain relief my GP because I’ve got, I go to a practise for GPs. Every now and again one GP will pick up about the amount of pain relief I’m on and question it. And so you know, and I think they are, probably concerned you know because I have gradually increased and changed. I used to be on Oxycondin which were good in the beginning but they started to wear off. I noticed that the pain relief started to wear off. And I think it’s trying to find that balance of almost like palliative care where you’re drugged, you know, I could be drugged up to the eyeballs but not able to function. But I know these patches now they don’t give as much relief as they used to. So you know you get to a point where it just takes the edge off the pain and this nagging pain is always there you know. it’s different to a sharp pain where you, where you have a pain where you move something catches you. This is just a nagging pain that’s there all the time. it’s a funny, it’s like having toothache or you know, but it’s all over your body.

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Pain clinics

Pain clinics aim to give patients relief when pain is particularly bad and help people to become more mobile. Pain clinics vary in the treatments offered and not all hospitals have a specific pain clinic. Some are run by a consultant with a special interest in pain, others also have a physiotherapist, a nurse or a psychologist. Very few of the people we talked to attended a pain clinic for assessment and medical treatments or, for prescription of specific pain relieving medication.
The experiences of those who attended a pain clinic varied, mainly because their medical problems were different. In 2007 Cressida was admitted to hospital for rehabilitation and pain relief treatment. She complained of generalised pain, especially in the pelvis, hip, thoracic and lumbar spine. She had physiotherapy and hydrotherapy and was started on a buprenorphine patch. She says that the morphine patches have ‘changed my life’. After her kyphoplasty, Noreen continued experiencing back pain which she attributes to ‘wear and tear’ and also to her own attitude of not pacing herself. There wasn’t much the pain clinic could do for her because many of the treatments had side effects that she couldn’t cope with. Her only option was a nerve block injection but it contained steroids, so it had to be ruled out. So she was offered acupuncture treatment but it had minimal impact in alleviating her pain. She was then invited to attend a six week pain management programme but it was a distance to drive to, so she has postponed attending the programme for the time being.

Morphine patches have made a tremendous difference to the pain Cressida experiences.

Age at interview 81

Gender Female

Age at diagnosis 62

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This, the interesting thing is that this, this patch, did you see about that patch? Do you know about patches?

Well patches have changed my life in a way that I didn’t they could. I started on the patches last September. And I think I must’ve had the first ones, more or less when I first went in which was the 6th of September. And I was discharged on the 28th. And I was quiteI felt quite sick. I never was sick. And I used to heave a lot.

And that’s why I was there for the three weeks to, to get the dose right. And they did experiment quite a lot, in getting the dose right. And then they came and they, it seemed I was more tolerant to it. And so I came home.

And I felt relief because I don’t have anything like the pain.

Well it’s not just the walking because it’s the carrying too. I mean the walk, if you want to go for a walksince the patches I can walk a little bit. But it’s you always have to think about the getting back. And if you walk to shop, there’s no way I could carry all that stuff.

So it had improved your
Oh it’s improved it absolutely unbelievably. I think I’ll make the end of the year all right [laughs]. I absolutelyit’s a miracle as far as I’m concerned.

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Noreen talks about her experiences of being referred by her GP to the pain clinic.

Age at interview 77

Gender Female

Age at diagnosis 75

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Okay so if you take me through after the operation how you felt and why they send you to the pain clinic?

Yes, well after the operation, although I did, my pain was less than it was before the operation I was still having a tremendous lot of pain. And although I was putting up with it, my GP was just trying to help and she said, Why don’t you try the pain clinic, just to give you rdquo; Because pain is exhausting. I didn’t realise how exhausting pain could be. I realise how my husband would have suffered all those years really. So, she said you can’t lose by it, you know, and they may give you a nerve ending block. So I agreed. So she was just thinking of something to relief the pain other than tablets because she knows that I just can’t cope with them.

Yes. So you went to the pain clinic?

Yes.

And what happened?

Well then, you know, we had a chat and he went through all the tablets that he could give me. But he realised that, you know, and they tend to give, I mean people with a lot of pain tend to get, tend to get depressed. Well I knew I wasn’t depressed and I didn’t want any of those drugs that, because they have all got such side effects and I know that I just can’t cope with them. So, so then he went on to and I said, oh and he said, What did you expect when you came here And I said, Well my GP thought that I may be able to have a nerve block to relieve me some pain So he said, he said, he would be, quite happy to do it for me, he said, And some patients it lasts for six months, some patients it only lasts a fortnight the pain relief. And he said, he wouldn’t like to be doing it on me every fortnight and then he started telling me what he put in it. And when he said steroids, I sort of said, Huh steroids He said, Yes and you can’t have them I said, No So he said, That’s ruled that out. So that was the tablets ruled out. That’s that ruled out He was ticking the boxes and then acupuncture. So I said, Yes, whatever you say So that was when I tried it.

And
And, and it just didn’t work for me. It did say in the leaflet. They always give you leaflets which are brilliant. Which surprised me, that I didn’t really know that there was side effects with acupuncture. But, as the nurse said, There’s side effects with everything And I suppose now they have got to tell you everything, what with people taking them to court and everything.

So I went weekly for five weeks. But it didn’t do any good at all. In fact it seemed to aggravate it. So I came to end that. And she saw me again, and she did offer me, she did offer me another course of pain management. It was two weeks, two days a week for six weeks, two hours, so that’s like four hours a week. Going, travelling to the hospital, and parking, and all the things she was tell me that they were doing, and really I didn’t it was, you know, I said, No I said, Can I think about it And she said, Certainly And gave me a number and I wanted to she’d give me an open appointment

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Pain management programmes

These programmes have been designed to assist people whose lives have been negatively affected by persistent pain. Unlike pain clinics it does not aim to relieve pain through the use of medication, but it is a psychologically-based treatment that aims to reduce disability and pain by teaching physical, psychological and practical techniques to improve a person’s quality of life. These types of programmes are usually delivered in a group setting by an interdisciplinary team of healthcare professionals. People are usually referred to a pain management programme by their local pain clinic.
Robert’s consultant at the pain clinic suggested he attended a chronic pain management programme to help him deal with his everyday life, persistent pain and his depression. He said that the pain management programme taught him three things’ to manage his pain, his lifestyle and the image of his pain.
Several people we talked to said that symptoms like pain, tiredness, immobility and fatigue had led to depression (see also Feelings and thoughts about osteoporosis).

Robert talks about what he learned at the pain management programme and the impact it has had on…

Age at interview 49

Gender Male

Age at diagnosis 43

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But all those pain reliefs there comes a point where they don’t, they don’t do anything. After a while you, your body fights it. So your body sort of, you know, well it’s a useless pain. it’s not a useful pain. So I went to a pain management clinic. And it, unfortunately there’s a massive waiting list to get to see these people. And what. When I went in my first interview with them and they said, What do you miss most about your life. And I to say my job, I miss my job the most and I just burst into tears. And I was so depressed I didn’t realise but I was clinically depressed because I, by that time I’d probably gone through probably two and a half years of constant pain.

And you know, I haven’t slept a full night’s sleep probably since June 2002. It sounds dramatic but it’s true. You know I don’t. You sleep for two hours at a time and then you wake up and then you sort of move around a bit, you shuffle. So you’re constantly tired and that’s the biggest thing, is the fatigue, the pain. You’re fatigued all the time that you re constantly tired and under pressure.

I get stressed at the very little, the slightest thing that knocked my lifestyle out of balance would upset me greatly. So I went to a chronic pain management clinic and was given advice of how to a) manage the pain. Manage my lifestyle. Manage my image of the pain if you like. Because at the end of the day sort of like an image and reality you can change your image to something but you can’t change reality. So you have to sort of learn to deal with it yourself. And it’s almost like saying yes to something. Rather than trying to fight things and getting ill through fighting them you just say yes to it and go with the flow. And just try and be a little more relaxed.

They taught me relaxation techniques to tense every part of my body in sequence and then relax and release them. And I found that really good and it probably takes me about twenty minutes to go through the routine but then it sort of stretches my bones out to actually let me have a nap and have a sleep and have a catch up, recharge my batteries. So I taught myself through the pain clinic is to, is not to be, get to burn out stage where I work, go like a fool and then be worn out. Now I do little bits and have a rest, a little bit and a rest and just learning to manage my life and then it manages my pain as well. And also it’s taught me like sleeping methods. You know I’ve learnt how to sort of. If you can’t lay. I can’t lie down to go to sleep really. I have to sleep sort of like sitting up and reclining because as soon as I lay down it opens all my fractures up so it causes pain I think.

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