Managing Medications for Pain Relief
Since I started this blog I have had a bit of an on-going internal debate with myself as to if and how I wanted to discuss medication. It is such a personal thing and I am going to preface what I’m about to say with this caveat: medication is a serious business and in no way can what I am about to say be considered qualified advice. It is purely my experience, thoughts and feelings as of this moment in time.
Okay, now that’s out the way! My personal experience with medication is long and varying: there have been periods of time where I have been completely meds free, some where I’ve used it on an as needed basis during flares, and others such as since my last surgery in 2016, where I have had a full-on regime of daily meds.
In terms of pain relief (I also take anti-depressants and something to help with the incontinence caused by that surgery) I am not going to go into exactly what my regime is because as I’ve said, it’s so specific to my needs. I have friends who are on similar regimes, completely different ones, and one friend who has been allergic to basically everything out there and has to manage with no medication at all. We also all react differently to the same meds – my Auntie had horrendous side-effects from something I take that has been absolutely perfect for me. There really is no point comparing.
What I do want to address are the conversations we have around medication. For people living with chronic pain it is essential to have as much information as possible about the medications they are on. There’s something called the Analgesic Ladder, which I would urge everyone to look at – it sets out really clearly the different classifications of medications and can help map out which work for different types of pain, which may complement others or, if you’re on something that isn’t working, what other options might be available. It is at least a way of arming yourself with some basic information that you can take into any appointments with GPs or consultants.
Which leads me to my next point: If I could overhaul the medical care chronic pain patients receive, one of the very first things I would do would be to establish an early relationship between the patient and a pain management medication specialist. These specialists are so-called because they focus on medication for pain in a way a GP doesn’t. Towards the end of my pain management programme one of these medication specialists came in to talk to us. It was the first time any of us, numbering ten in total, had ever seen or heard of the Analgesic Ladder. It was the first time I learned that morphine usage may increase the risk of later developing osteoporosis. It was the first time we were able to critically assess, in depth, our medication options with the appropriate support. How crazy is that?! How is it possible, or acceptable, that in the four years I have been taking morphine this side-effect has only been mentioned once? The only major side effect of morphine my GP has ever raised with me is its addictive nature, which thankfully has not been an issue for me.
Another thing that was emphasised during that session was the continued monitoring of our pain medication. What actually prompted this post is the fact that a few weekends ago, I ran out of two of my pain meds. I messed up and so did my GP in changing the quantities I was prescribed, which unfortunately I didn’t catch in time. I had 3-4 days of withdrawal effects as I was essentially going cold turkey – never, ever, ever recommended. It took the better part of a week to get back to ‘normal’; however one thing I did note was that I had absolutely no increase in pain levels. Now admittedly I was mostly lying down in a mass of shivering chills or a pool of sweat, which wasn’t up to my usual activity levels. When this has happened previously though (rarely I hasten to add but it has done) I have always noticed a pain increase. What this says to me is that actually, I am now probably at a stage where I can review the medications I am taking and my doses of them. This idea of monitoring the effectiveness of medication was something the specialist advocated (admittedly not by going cold turkey but using a proper decrease over time), because why would we want to continue taking medications with side effects if we don’t have to?!
In my ideal world I will reach a point where I can manage without them – I’ve done it before and I am positive that I will get there again. If I don’t though, I am not going to beat myself up about it (which believe me, once upon a time I would have). As with many posts I see about mental health these days which, quite rightly, point out that you wouldn’t refuse insulin for diabetes so why should you refuse something for depression or anxiety, I am now firmly of the point of view that if pain medication helps your quality of life – flipping well go for it. Would I rather be in searing agony every time I attempt to leave the house or would I rather swallow my pride and some tablets to ensure that actually, I can do things. It really does boil down to that for me. If anyone ever makes you feel weak for feeling like you need medication – ditch them. Seriously. If medication helps you find a balance in your life, whatever that might look like to you, then use it. Also, as a physiotherapist kindly pointed out to me once, taking some medication that allows you to be more active is, in the long-run, potentially going to help you be medication free. Taking something now that helps you go out once a week for a short walk and some light stretches at home, may well turn into a twice weekly walk for 30 minutes and half an hour of pilates or yoga once a week, which could turn into an hours hike, an hour of yoga and some strength training with weights. Activity helps you build muscle strength, bone strength and cardiovascular strength. Maintaining a level of physical activity is so important in the long-term and medication can help achieve it. In time, you might even find that you can lessen the dose of medication whilst maintaining the activity levels, which has definitely been the case for me.
My hope is always that these posts are helpful for those of you reading, however I’m also really interested to hear what your experiences have been of pain relief medications and/or other treatments? I’m about to have a second qutenza patch treatment and would love to hear from others who have tried it.