You may have started reading this article thinking that I must be mad, or you may be reading this article because you feel the same way. The endless list of side effects, the chance they may not work and that constant word “addiction” that floats around. Yep, I’m talking about pain relief.
Pain relief, pain killers, tablets, medication, analgesics, they all mean the same thing – things that we take or use to help ease pain we experience. I’ve spoke in a bit more detail about pain and pain relief in this article, but I wanted to talk about my personal relationship with the pain I experience and the pain relief I take.
Out of all my chronic health conditions (4 to be exact), each one is the symptoms is pain. It presents itself differently for each condition. My Endometriosis pain is like period pain times a thousand, accompanied with extreme tenderness, cramps and an inflammed-type of pain. My Adenomyosis is similar, but has a unique sensation of my uterus falling out between my legs and cramps that stop you in your tracks. My bladder pain is only in a specific location and tends to be more sharp, and the pain that is associated with my M.E. is an intense ache and heavy sensation throughout my limbs.
The fact that the pain differs is a helpful thing, as it allows me to know which specific pain medication to take to help it. My only problem comes when things overlap, or when I am on my period for example, and most of my diseases are irritated.
I never really took much pain relief until I became diagnosed. Even when I was younger and in the midst of my illnesses (even though I didn’t realise I had any illnesses), over-the-counter stuff was the only thing I used, and even then I was never taking it regularly as it didn’t seem to work. But over the years, my prescription has elongated and the amount of tablets I now take is possibly quite worrying for some people who don’t know me.
I am currently taking upto 4 different tablets for pain relief, a mixture of simple or more basic ones, opoid-based ones and neuropathic ones. At the moment, I am being forced into taking them regularly due to the severe flare that seems to be lasting forever, but on a “normal” or a “good” day I rarely take these because I don’t always see the need. This alone will probably be seen as controversial or not really practicing what I write about – but to me, pain relief can be quite frightening and my main worry tends to be around dependency and addiction, plus with some pain relief I take there is a chance they can become less effective over time.
So why does it scare me? There isn’t one specific reason – it feels like there are a combination of factors that make me feel like this, and it is something that I am working hard on, especially as I am finding I need them more and more. I’ve outlined these below;
Even though it tends to be the stronger forms of pain relief that have the more serious side effects, all medication will have at least a few. Common ones tend to be drowsiness or sleepiness, nausea and diarrhea/constipation. Sometimes for me, I find reading through the side effect list more nerve-wracking than swallowing the pill, and maybe I need to get out of this habit, but I like knowing what I’m letting myself in for. For a lot of people, the fact the side effects prove to be intolerable means they are unable to or end up having to stop using the pain medication.
I don’t like something that is supposed to help me making me feel worse – I tend to experience nausea from my pain medication and it’s taken quite a few attempts at trial and error to find those that are easier on my stomach. I have also found that sometimes, when the tablet causing side effects can’t be changed (either because there is no alternative or the alternative is likely to give the same effects), I am then given more medication to take to reduce these side effects – the irony of using more medication!
I have also found that some side effects, typically drowsiness, mean that I am unable to take particular pain relievers when I am at working or going somewhere that involves driving due to it being unsafe. But if I am able to take a painkiller comfortably, then that’s all good for me.
I know this is *technically* a side effect, but I have put it into it’s own category because it’s a big one for me. A lot of the stronger, usually prescription only medication have this as one of the most common side effects. Yes, it’s great if you’re in pain at night because it might aid you getting some restful sleep, but to me it also means that it’ll limit what I can do and when I can take it. I find it’s even worse if it labels itself as “MAY cause drowsiness”, because then I don’t know what to expect.
Before I was stuck in this rut of frequent and prolonged flares, I wold rarely take my pain killers that made me feel drowsy, as I purely didn’t like the feeling. It is sort of like a cross between feeling a bit drunk and super sleepy, and I’d often struggle to keep my eyes open for a while after or wake up still sleepy in the morning. This also means that I am unable to take any medication that may cause drowsiness when I’m working – partly because I have to drive to get there and partly because I wouldn’t be safe to treat patients.
However, I have bravely increased my usage of these drugs when I need them – my GP advised me that my body would likely get used to taking them and thus the drowsiness would not be as prominent, and to some degree my GP was right – the drowsiness with one of my pain killers has pretty much ceased unless I take the maximum dose (e.g. 2 tablets rather than 1, or taking them every x amount of hours). But I only take the maximum dosage of my stronger pain relief if I am staying at home and not driving because I am still very wary of how drowsiness effects me.
There has been a lot of word in the media about the opioid crisis, whereby there is a lot of “over-prescribing” or “high use” of opioid medication. An opioid or a drug containing opioid is a compound that has pain relieving effects, but also psychological effects. They are a very strong form of pain killer and include drugs such as codeine, tramadol and fentanyl. It also includes heroin, but we’re focusing on prescription-only medicine here!
As well as variety of unpleasant side effects such as sedation, itching and euphoria, the main concern is how addictive they are. If you have ever had any opioid based medication, you’ll have probably seen on the information leaflet or label a section about how taking regularly might lead to addiction. But if you are like me and are requiring their use regularly, what are we supposed to do?
Despite the fact my GP has reassured me how to take them properly and that addiction is unlikely, it still worries me, and it’s why I’ll often try and have a break from using any pain killers containing opioids. I’ll also find myself questioning if I need them because I worry I’ll end up relying on them.
Usually I am not one to give a toss what other people might think, but there is something when it comes to popping pills that makes me more cautious. Have you ever had to fill out a form that asks you what medication you are taking, and you’ve got a long list, only to find the nurse or person receiving it has to question it or make comments – “you’re taking a lot”, “why are you taking all of this?”, “have you been reviewed for this?” or “do you really take all of this regularly?”. Bit of a weird thing to lie about, don’t you think?
Anyway, there is this bit of me that wonders what people think if they know or find out I am taking the concoction I am – will they think I’m an addict? Will they want to know why I am taking it? Will they ask me what I am taking when I work? A lot of people in the chronic illness community feel uncomfortable about sharing their medication, not just pain relief, with others because it’ll often bring questions that they don’t want to answer, or worse they’ll receive negative comments.
This means I’ll sometimes avoid popping a pill in social situations to prevent looks or questions, or find I am explaining to people who really don’t need to know why I am taking them and how I am taking them. The latter I find I do very often, particularly in an appointment situation because I don’t want anyone to think I am abusing the drugs I’ve got.
It is well known that some forms of pain relief, including opioid-based ones, become less effective over time, and this is very relevant for chronic pain. The thought behind it is that the receptors that these drugs act on stop responding as well, thus meaning the effectiveness of the drug drops. There are elements of something similar with chronic pain also – the pain an individual experiences rises and becomes harder to manage because of how the brain and nerves are interpreting it, thus medication can be tricky to control it.
For me, I worry about what I’ll then be left to try if my current medication stops working, and what side effects or problems they will bring. I have found that paracetamol no longer has any effect on my Endometriosis and Adenomyosis pain, so I automatically have to step up to the stronger ones – what happens when they stop working?
Even though this is not something we are thinking about for a while, but becoming pregnant and having a baby on the medication I am on means I will be classed as a “high-risk” pregnancy and require extra monitoring for me and any baby I have. There is also a very high chance that any baby I have will be born addicted to one or more of my pain medication. Although with my health conditions any pregnancy will be “high-risk” anyway, the extra monitoring and appointments I may have will be focused around the babies health rather than mine.
Of course, the plan would be to come off as many medication as possible providing it is safe for me to do so. However, I have already tried weaning off some of my pain killers for other reasons, and it didn’t go down too well – my pain seemed so much more sensitive and triggered my M.E. worse than ever, so how will this be manageable when we do want a baby? The thought of giving birth to a baby addicted to MY medication that I have chosen to keep taking makes me feel a bit guilty too.
As I mentioned above, I have worked hard to try and overcome these fears, particularly recently when my pain has been really tricky to control. One of the most effective methods I have found is keeping a record on my phone or piece of paper of what I’ve taken and when I’ve taken it, as well as recording the dosage I am allowed. I even have a scrap bit of paper to hand if I’m out and about and haven’t got the box or leaflet on me (a lot of the time it’s just the packets I put in my make up bag), so I know what I am allowed to take. I find this helps me keep track of everything really easily and enables me to progress through the stronger pain killers at a steady pace, as well as physically reassure me I am not taking excessive amounts.
I’ve also found doing something similar with what each pain medication contains helps. For example, drugs that contain a mixture of paracetamol and something else – even thought I know what they are, there are moments when I am reaching for something quickly or having a blank, so having something to refer to is super useful.
I also have to have regular appointments with my GP to ensure that the drugs are working and that the dosage is effective without producing too many side effects. These aside, I often find being reminded of how and when to take my tablets useful.
To try and limit the amount of drugs I take, I have turned to things such as heat, ice and TENs to help ease my pain. These are all effective methods of pain relief – future article coming soon!
As my conditions are chronic and incurable, it is inevitable that I will be taking some form of pain relief for the rest of my life, and whilst I’ve started to be more accepting of this and braver with my tablets, I still have these worries in the back of my mind. I am hoping that if my pain settles down, or we find a hormonal treatment that is safe for me to take, then I might be able to stop a lot of strong ones altogether.