Medication for fibromyalgia

There are a number of treatments and therapies to manage the symptoms of fibromyalgia, such as pain, sleep problems or depression. This may include drug treatments, although studies tell us that physical and talking therapies are often more effective. Whilst drugs can’t treat fibromyalgia alone, they can sometimes help reduce symptoms to a level that enable people to become more physically active and take part in physical and talking therapies.

Some of the drug treatments that can be helpful for treating fibromyalgia were originally used to treat other conditions such as depression and epilepsy. This includes antidepressants such as amitriptyline, or drugs targeting nerve pain, including pregabalin and gabapentin. They work by changing how the brain and central nervous system process pain. They can reduce pain and help sleep, but can have a number of side-effects.

Other drug treatments that can ease pain include paracetamol, or stronger medicines such as co-codamol and co-dydramol which contain paracetamol and a low dose of a stronger opioid painkiller. Other stronger opioid-based painkillers include tramadol and morphine. Opioid-based painkillers can cause a number of side effects and are generally not recommended for the treatment of fibromyalgia. Opioids tend to mask pain and do not resolve the problem causing it. There is also evidence that long-term use of opioids may actually increase pain because the body can build up a tolerance to them, and with long-term use there’s a risk people can become addicted to them.

The people we spoke to talked about taking various medicines for their fibromyalgia. These were mostly intended to help with their symptoms of pain, and ranged from over-the counter painkillers such as paracetamol and non-steroidal anti-inflammatories (e.g. ibuprofen) to prescription medicines. Although a few said that some of these did help to control their pain, a common experience was that they didn’t work that well and that dosages had to be increased over time.

Julie takes anti-depressants amitriptyline and duloxetine for pain, but is not sure if it’s helping or not.

Age at interview 48

Age at diagnosis 45

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I mean I’ve, I’m on duloxetine and amitriptyline and something else for pain, what else for pain? I can’t remember what it is, something else anyway.

That’s alright.

But they don’t really do anything. Well they might, I mean the thing with tablets is you don’t actually know because if you weren’t taking them you might be in more, you might, your pain’s, when pain can vary you cannot tell if, really if the medicine is effective because you’re still in a lot of pain, so you don’t know if you would be worse if you hadn’t taken the medicine or it would’ve made no difference, it’s weird, I don’t know.

How does it make you feel if you know, like it sounds like a trial and error kind of thing and you’re not really sure as you say, is it the medicine or not, how, how do you feel about this?

I just get really irritated with it all. I go and see the doctor and they say, Oh, you’ve had everything, you’ve tried everything, there’s nothing you can do, we don’t want to put you on opioid, and I don’t want to go on opioids, I’m quite happy about that. But it’s just, it’s just frustrating because it seems that no-one can do anything about it. And you know, it’s a very common condition, one in, I think was it one in 25 people get it, four in a hundred. So it’s quite a common condition and you think they would’ve worked something out by now that would help, but obviously not [laughs].

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Some people described experiencing negative side effects from prescription painkillers. They described having to balance the side effects with pain control, sometimes more medication could help with their pain, but make them less able to function. Mary said that to control her pain makes her ‘lose the ability to function.’ Aleysha feels that her medication does help with her pain but makes it hard for her to sleep.

Aleysha feels that her medication does help with her pain but makes it hard for her to sleep.

Age at interview 23

Age at diagnosis 22

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So I finished my year, I like kept going to school, still had pain, still didn’t know what was wrong, still didn’t really know how to fix it. I started taking some different painkillers. At that point I was like then basically just given opioids and they were, told me, Deal with it, don’t get addicte [laughs], but that was the only thing that would take my pain away even briefly.

So I have been able to control my sleep over time, but it has taken a long time, especially because my painkillers, the only painkillers that actually completely take my pain away, are opiates, so I take tramadol, at quite a high dose, and that’s the only thing the works, and I have the problem that one of the main side effects that I have is that it keeps me awake.

It makes me very drowsy, so I can’t really function, but I can’t sleep. So I was constantly having this battle of do I take my painkillers to take the pain away and then not be able to sleep, and then I would have the effects the next day of not properly sleeping, or do I not take the painkillers and try to sleep, and probably not sleep because I’m in too much pain, and then see what happens the next day? So it just kept going on and on and on.

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Mary said that to control her pain makes her lose the ability to function.

Age at interview 59

Age at diagnosis 43

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it’s just not the case, I just, take the medications that I’ve been given knowing that, hopefully I’m not going to react to the drugs that I could take years ago all of a sudden give me anaphylaxis. So it’s like, it’s like playing Russian roulette, they’re terrified to change my medication because just now what I’ve got I can take. But if I take all that I am prescribed daily it just wipes me out, I can do nothing other than lie in my bed or lie on the couch, because I can’t function. So to control the pain makes me lose the ability to function, and that’s horrible.

So what do you do, it’s catch 22, do you take all the medication and just spend the day spaced out, or do you take some of the medication, you’re in excruciating pain, but because you live by yourself you’ve got to, you’ve got things to do, you’ve got to function as a human being.

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Martin said that for him, the side effects were worse than what help it did do. He describes suffering a bad reaction a painkiller.

Age at interview 46

Age at diagnosis 28

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So I was going back then, then I just couldn’t work anymore, and then for the next six months I was just totally sort of bedridden, and it was this much, not much more they could do apart from painkillers. I think that was about the start of it. What else?

That’s alright. So, what happened afterwards? So you received the diagnosis?

Yes.

What happened afterwards?

To start with they put me on antidepressive tablets, amitriptyline, just a low dose, that’s the sort of standard treatment they put people on to start with, but it didn’t help. The side effects was worse than what help it did do and I was just getting just paracetamols, then, so it was just a case of left me alone to get on with it. I was seeing my GP maybe every month, then I was still on the books for my, where I worked, but eventually after my time run out, six months, or, I had to leave my work.

it’s difficult to say what, what more they can do because it’s difficult to treat chronic pain. And I think they maybe did try some different painkillers, which the side effects. There was one painkiller I got, which I ended up in hospital because I took an allergic reaction to it for my liver, and it was quite bad and I spent about a week in hospital and I got jaundice. So that, so I kind of limited to what painkillers, and I took me a long time to recover from that.

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Melanie has been prescribed medication for pain relief and depression. Although she feels that these medications don’t really work and is concerned about their long-term impact, she’s worried about how much pain she would be in without them and how she would cope. Lisa doesn’t feel that the medication she was prescribed helps her, she wishes there was something more that could help her.

Although Melanie feels her medications don’t really work, she’s worried about how she would cope without it.

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And, it’s very hard to tell the doctors exactly how you feel because there’s no support, there’s no mental support at all. I was advised to be on cognitive behaviour therapy, but I never got given that. Instead I am on, an antidepressant called fluoxetine, and I’m also on another one that is combined for pain relief, which is amitriptyline.

None of these really work, so you are left with how much pain would I be in if I didn’t take these things, and how would my quality of life be affected? I just don’t know and I’m scared to find out. So I take the pills and I hope that I’m doing the right thing and I’m, I hope it doesn’t shorten my life too much because I want to be there for [my son]. I want to walk into school and see him graduate of course. He’s just my little miracle, so he keeps me going.

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Lisa wishes there was something more that could help her in this day and age.

Age at interview 40

Age at diagnosis 35

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I mean I think GPs’ knowledge, every GP’s different obviously, but I’m yet to meet one that you know, can provide me with any kind of help that, well that would help me. My auntie feels the same, she just, she just doesn’t bother even going about it either anymore because, she’s on different medication and things than I am, but she feels the same.

Can you think about something what they could offer to make that difference to your life?

[Laughs] If they could even just offer a medication that works, except amitriptyline, because they all seem to give, maybe I’m wrong, I’m not a GP, but they all offer that, so that must be in GP school If somebody comes with fibromyalgia, offer them amitri, I tried it you know, it didn’t work for me, but there’s got to be something more than that, got to be [laughs], in this day and age, you know what I mean, all this research and universities, there’s got to be something else.

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Many people expressed a reluctance to become too reliant on taking lots of pills. Chris feels like he takes too many tablets and Lyn said that she doesn’t want to depend on medication and become ‘zombiefied.’

Lyn said that she doesn’t want to depend on medication and become zombiefied.

Age at interview 68

Age at diagnosis 50

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They want, as I, they wanted to put me on various, tablets that would’ve zombiefied me, which, I mean amitriptyline, who wants amitriptyline? That’s a wicked heavy duty drug. Gabapentin was the same, and I just didn’t take them, I wouldn’t, I wouldn’t accept them, so I have to get on with it with the milder drugs, and hope [laughs] good luck [laughs].

So for the fibromyalgia I have got fluoxetine, vitamin D and Rescue Remedy that’s all I, and paracetamol as I need it, when I need it. They wanted me to take paracetamol every day three times a day and I wouldn’t do it, and I, I’ll take it when I need it and I try not to.

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Chris sometimes feels like he’s taking too many tablets.

Age at interview 58

Age at diagnosis 43

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At the moment, I’m on all sorts of medication both for my mental health and for my pain for my body’s health, you know, in respect of what I take. I feel I take a tablet to do this and a tablet to do that, tablet to rise [smiles] and a tablet to sleep [smiles], a tablet to eat [smiles] and a tablet to stop eating [smiles], you know? So I just feel that lost, you know? I feel pretty hopeless that things won’t get better on a dark day. But I’ve got to accept that it is what it is, and make best of what I’ve got. And most importantly, I know in my own mind that if I don’t move then I’ll lose my mobility and that, in turn, will cause a lot more problems for me.

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