Tuesday, 19 April 2016

Pain vs Pills: The Difficulty in Finding a Balance

After last week's in defence of painkillers post, I've been thinking a lot about the balancing act that is having chronic pain and taking painkillers. Pain is something I've never lived without, and being in the same type of pain, at the same level, I learnt to sort of tune it out. It was there, I knew it was there, but I could ignore it enough to get on with my day. Before my condition worsened, managing my pain was so intuitive that most of the time I barely even noticed I was doing it.

But then my Joint Hypermobility Syndrome did get worse and I was hit with a whole host of worsened pain, of new pain, of pain in new places. I felt like I had developed a condition for the first time, with a beginner's knowledge of how to manage it. I used to be good at knowing what would make my pain worse, and avoiding those things if I could, and if not having the strategies, and the medication, in place to deal with those times, but now I had no idea what to do.

While pain management involves a whole host of things beyond medication, the thing I have struggled with the most is finding a painkiller balance that works for me, having never needed to take regular pain relief before. While I know I will never not be in pain, my base level of pain is a lot higher than it used to be and that makes it hard to deal with the way I am used to dealing with it. That, along with increased pain from regular activities and even worse pain from irregular ones, means finding a pain vs painkiller balance strongly resembles a quest for the holy grail. 

When I first started taking the main prescription painkiller I currently take, I was prescribed one, twice a day. At first this worked wonders and I felt so much better, which was a relief because the first pills I was prescribed didn't help much and also gave me the worst acid reflux in history and eventually caused a painful and worrying acute burning sensation in my stomach. Bad times. I am, unfortunately, a person who becomes tolerant to medication very quickly, and so that one tablet, twice a day, soon became not enough. At this point I was still working full-time and really struggling. Sometimes I would have to stop typing for a bit because of the pain in my hands and arms. The short walk from the station to my office was a daily torture.

My mum kept telling me I could take more, 2 tablets a day was not the maximum dose. But I was worried about how fast my tolerance to them would progress, and how quickly I'd run out when I actually only had enough for 2 a day (also the *rules*. I couldn't take more than prescribed, that was *bad*).  I then moved, and it took nearly 2 months to sort out an appointment with a GP: "Yeah, you can actually take 2 of these up to 4 times a day" she said. Well. Okay then. Now I had less pain, which was nice, but also I was taking up to 8 strong painkillers a day, and that does not come without a cost. If I have to take a lot of painkillers in a day I always have an undercurrent of nausea, I lose my appetite, and I just feel a bit...strange. Not entirely natural. It's a trade off, and sometimes it's one I don't want to make.

One of the things I struggle with most is when to take painkillers at night. It's not until I settle down to sleep that sometimes I realise just how much pain I've actually been in that day. And instead of just taking painkillers then, I think I can sleep through it and I spend 3 hours tossing and turning before giving in and taking painkillers in the early hours, which leaves me feeling really icky and out of it the next day. And I always fall into that trap, no matter how many times I think I won't.

I try to rate my pain daily, or several times a day if needed, on a scale of 1 - 10. It's relative to my own pain, as in a 1 is the least amount of pain I, personally, could be in with my joints and 10 is the most. If I tried to go off a universal scale there just wouldn't be enough leeway for it to suit my needs. To give this a bit of context, in the old days pre-worsened condition, most days would be a 2 or a 3, with a 4 being a bad day an a 5 being 'wow I really pushed myself here, this is bad times'. Even then that would be fixed with over the counter stuff. Now, most days are a 6. Quite a few days are a 7. If I have a 4 day, that's a good day. The scale helps me keep things in perspective, and helps me decide when to take painkillers. I usually put up with the pain until it hits a 7. But some days I can cope with a 7, and some days I can't cope with a 5. It also depends on where the pain is, if it's in my hands and arms, and I'm trying to work, it's more likely that I'll take painkillers.

Once I've made the decision to take something, what do I take? Start with Paracetamol and Ibuprofen and see how I go? Hit it straight with the strong stuff because it's pretty bad? Take *everything*? Sometimes I feel like my method is a bit scattergun, because it's based heavily on how I feel (emotionally, not physically). Once I've rationally rated the pain, it's my emotional state that usually decides what I do medication-wise. Can I cope for long enough to see if an over-the-counter-combo will do the trick? Or do I just need to be in as little pain as possible as soon as possible? It's like a little flowchart in my head that tries to apply logic to what is actually a very feelings-based decision. Unfortunately, I'm also quite stubborn. So while at the beginning, when the pain was new and scary I was in a 'give me ALL the drugs' frame of mind, now I'm a bit like 'I'm bigger than this pain, I'm stronger than this pain, I can outlast this pain', when to an extent that's maybe true, but mostly I'm just making myself miserable (and usually people who have to interact with me miserable too) and stopping myself from doing things I want to do. Like now, for example. At the time of writing this, I had an exercise class a few hours ago, I'm in a lot of pain and I've typed this entire blog post out all the while refusing to do anything about the worsening pain. Which I'll pay for in an hour when I try to sleep through it.

Do you have a good pain vs pills balance? How long did it take you to get there and do you have any tips to help people like me who struggle with it?


  1. This is something I really struggle with as well. Paracetamol doesn't touch my pain at all, and I'm not allowed to use Ibuprofen with my Crohn's. I have stronger painkillers where I find just taking one will work for most of a day (it makes me feel a little fuzzy but isn't enough to cause nausea). You're technically allowed to take 2 of them 4 times a day but I don't think I'd even function if I did that, plus even if I take more than one in a week I can feel it getting less effective. So mostly I try to manage with other methods (heat, rest etc) but when I have a flare-up it's really, really hard. I wish someone would invent a painkiller that works constantly with no negative effects!

    1. I find Paracetamol + Codeine and Ibuprofen can sometimes help enough, what a shame you can't take Ibuprofen! It's good that 1 painkiller can help you, but I hate that feeling of them getting less effective. Other methods make me feel happier, but also they take so much energy to manage, I find. I think I just need more time for it to feel more natural! I've been taking Gabapentin which helps with my pain longterm so I take a lot less painkillers now, and I haven't had any side effects...yet

  2. Until my pregnancy, I had figured out a pain medication routine that worked for me. There were times I was still in pain, but I relied a lot on Kinesio Tape, bracing, heat, and ice to help take the edge off. Now with the war on painkillers I'm worried about trying to rediscover a regimen that works for me!