There’s a lot of talk lately about living with pain and what to do about pain, and as a person who is in pain a lot, I thought I might throw my two cents on the pile.
People who aren’t in chronic pain, or who have never done anything worse than had to get through a crappy sprain, might not understand what it does to you long term. Now, that applies even to relatively low level pain that marches along in the background: if that pain was short term, no worries. You’d just tough it out, maybe try some paracetamol (if that works for you), or ibuprofen (if you’re able to take it. I’m not). You’d rest, take it easy.
The problem comes when even that low level pain is constant, or even only goes away for an hour or so at a time (FREE! I WILL DO ALL THE THINGS!).
I’m not saying my pain is low level. Pain is incredibly individual. My pain is abdominal and crampy, so it’s the kind of throbbing, burning ache that can sneak up on you. You shift a bit, feeling uncomfortable, but keep doing what you’re doing. You lean forward a little, frowning, but turn the page in your book. Then it gets bad.
I often don’t know how bad it’s gotten until I realise I’m hunched over, breathing through it, and I’ve closed my eyes, or I’m leaning on a desk waiting for the wave to ease. I do get sharp stabby pains (obviously bad!), and they floor me, but they’re not super common and they’re not the real problem.
Being in constant pain is not a not tough enough problem; it’s a medical problem, for a couple of reasons, even if you want to be a hardarse about it.
- Long term, constant pain can lead to hyperalgesia/hypersensitivity, which is where the pain comes on even when the cause is gone. Your spine is sending panicky pain signals that are either completely unnecessary, or way overblown. I have that in my intestinal tract. Good times! There are a few ways to treat and reset hyperalgesia, and I’ve gotten some benefit from them. I recommend a really good pain specialist, if you can afford it (and that’s a real issue. My pain specialist is absolutely not cheap).
- Long term, constant pain, whether it’s turned into hyperalgesia or not, is a mental health issue. It affects your concentration. It affects your energy levels. It promotes severe anxiety and depression. It makes you cranky and angry. I put in a lot of disclaimers when I complain about things, mostly because I know that when I’m in pain I tend to be really negative about everything else. If you don’t have the self-awareness to know you’re lashing out (and nobody is perfect), it can have appalling effects on your relationships and your family life. I know when my patience is running low, and I try to avoid people (even people I adore) who will set me off. I don’t walk Amos if he seems extra bouncy on those days, because I won’t be patient enough with him – and he’s a dog, he has no idea why I’m upset.
Essentially, expecting people to harden up and tolerate chronic pain, even low level chronic pain, is going to have devastating effects on their life. This is not to say you shouldn’t just go “oh well, I have a mild headache, might just take it a bit easy and drink some more water” – that’s not a terrible idea. Try icing and/or heating a muscular ache that’s just come on.
The thing is: chronic pain sufferers have already tried toughing it out. They’ve tried icing and heating – many of them keep doing that, to reduce the amount of painkillers they take. Since my pain is through some layers of fat and muscle, that… doesn’t help me. I’ve tried a few things. Sometimes a heat pack helps. The ice pack makes the cramps worse (possibly I was too keen with it), but about an hour afterwards, the pain seems to subside.
And sometimes, I say, fuck it, I’m done, and I take the painkillers.
My pain tolerance is actually pretty good (you might not think so, given the amount of painkillers I take), but there are some limits to what I can get through and what I can get done.
Here’s a list of the ways pain interferes in my life (not exhaustive) and how much. I’ll break it up into things I have to do and things I want to do.
Things I have to do
- Physio work and resistance training
I have to do physio work and resistance training because I’m hypermobile. My joints basically collapse if I don’t, and then I end up in more pain. Now, the problem is that I have to do a lot of core work. I have to. But core work compresses my abdomen, which is already sore and crampy and inflamed. So it can make that pain worse, and the pain distracts me from proper form and tires me out. Still: it’s something I can work through.
Interference level: mild to moderate – can tough it out most of the time
- Concentrate on reading scientific papers, designing experiments, analysing data
This is a really bad one. This is my actual job. Pain can cause brain fog, and it’s hard for me to concentrate. It’s hard from me to separate this from me low blood pressure issues and muscle fatigue relating to the (suspected) EDS; they both interfere like bastards. What I have found is that if I take painkillers, my concentration is (usually) much better. I can string thoughts together and get stuff done. If I was allowing myself to try and tough it out, I would do an extremely shit job.
Interference level: absolutely fucking appalling – toughing it out makes me useless
- Repetitive lab work
This, surprisingly enough, is okay! I have been doing lab work long enough that it’s basically muscle memory at this point. I double check my maths, I line my reagents and tubes up with my tip boxes so that I know if I’ve missed something – I have a bunch of different strategies, the kind that most lab people develop, to account for my native absent-mindedness. I can get through a long day of lab work while in very bad pain, and still get stuff done. I shouldn’t, because of the whole hyperalgesia thing, but I can, for at least a day.
Interference level: surprisingly low
- SCUBA diving and guiding
This one is a mixed bag. For the most part, I do quite well. I have a lot to distract me from the pain – people to talk to, equipment to check – and when I’m underwater, the cold actually helps ease the pain mostly (unless I get the stabby style of cramp, and then I just have to tough it out. That’s only happened once though!). I don’t have trouble concentrating because, like lab work, diving skills are very much in the “muscle memory” category. Check gauges, check on group, count heads, point out cool things, help people with stuff. It’s all quite natural. Now, walking around wearing cold water dive gear is hard muscular work, but it’s not high impact or cardio, and I manage.
Interference level: mild to moderate
It’s a problem. On the one hand, pain makes you tired, and when it gets past a certain point, you just kind of drop off (assuming you don’t have actual insomnia); but research (and personal experience) shows that sleeping while in pain actually does not result in quality sleep. You sometimes wake up feeling just as tired as when you went to bed. On the other hand, I’m not moving around, digesting food or compressing my abdomen when I’m sleeping, so it’s a mixed bag. I don’t like pain killers before bed because my (extremely wrong) instinct is that I could just sleep through the pain. I might take a sleep aid, maybe once a week (2-3 times in a bad week, not at all in a good week) on average.
Interference level: mild (when pain is moderate), to severe (when pain is bad)
- Interacting with other humans and not being a complete dick
Ah, this is a fun one. Sarcastic and impatient Kate comes out when I’m in a lot of pain. I’m less polite, less careful, less filtered. As a spectrummy lass, a lot of energy goes into my filters and my careful examination of what I’m saying and how people might take it (YES I OVERTHINK THINGS HUSH). I have to really tighten my grip on myself. A lot of the time, I’m not even upset or snarky, but my voice will come out very tight and strained and people think I’m angry with them, and then I have to manage that. I won’t ever take painkillers just so I’m not a dick with co-workers – I have a bit of a map with long term colleagues – but if I have to interact with a lot of strangers and I’m in a lot of pain, I will.
Interference level: variable depending on context
- Writing stories
This is not quite as bad as the “reading scientific papers” (unless I’m outlining. Outlining requires a lot more sharp focus for me personally), but it falls under that category. And yes, I do have to do this to stay sane.
interference level: moderate
- Voyage work
I love voyage work, but it is extremely intense. It’s 12 hour shifts, 7 days a week, for multiple weeks, surrounded by people I don’t know very well. It’s basically a stress keg (and often heat keg: most of my voyages are in the tropics, which sets off the Crohn’s and the low blood pressure issues). I would not physically be able to do this without good pain management. Without painkillers, I would lose a significant portion of my income. I’m a contract, casual scientist. My last voyage earned me more than 2/3 of the previous year’s earnings.
interference level: ahahahahaha massive
Things I Want to Do:
- Cardio (running, swimming)
I could argue this is something I have to do, because it helps my overall fitness and energy levels, but people are more likely to argue the point, so it ends up here. Running is high impact, and it’s really bad for Crohn’s pain – but it’s my major cardio outlet, I’ve worked incredibly hard to be able to do it as a person with hypermobile joints, and it is incredibly good for my mental health. Pain interferes with it abominably. Running changes blood flow to the gut, and wow, does it show, it’s appalling. It can bring me to my knees (almost literally, but I very rarely fall over). Swimming… that’s something I don’t do much, just because of the level of faffing about required to make it happen, but even then, the increased blood flow seems to set off my pain. Not as bad as running, but still quite shit.
Interference level: bad to really really bad
- Rock climbing!
Pain does not interfere that much with rock climbing unless it’s super bad. I am a very slow climber because I have to set my joints and because keto doesn’t leave me with much explosive power (glucose is much better for that), which will limit me in a lot of ways, but it does mean that climbing is extremely low impact. It is core work, so that can be a problem, but it’s negligible. Unless I have very bad pain, I don’t have to take painkillers for this.
Interference level: quite low
- Housework, dog walking
I don’t put this under “have to do”, because the house can get to a fairly appalling state and life will move on, but it’s important for my mental health to keep things moderately tidy. Still, I can get a fair amount done in pain. I just focus on the next little thing. The next little thing. And the next little thing. And then it is done, and I relax, and feel a bit better about everything – whether it’s because the bed is made with fresh sheets, or the kitty litter is changed and the bathroom no longer smells like cat urine and poop, it’s nice. I’ve put dog walking under this because – again – Amos will survive without walks (he has other mental stimulation) for a few days. I can usually manage maybe 20 minutes while in pain.
Interference level: low
I’ve exhausted my brain a bit here, and no doubt I’ll think of more as soon as I click “Publish”, but let’s go with the list as is. The important thing to note is that, even when the interference level is low, that’s only short term. If I had to do tedious lab work on end while in pain, it would become impossible.
If I let myself be in pain all the time?
I wouldn’t run. I would barely do physio. My joint health and muscle tone would decline until walking was exhausting (I’ve been there quite a few times). I would barely talk to friends. I’d suffer through interactions with co-workers at a bare minimum. I wouldn’t read papers or manage proper analytical work – I’d effectively be out of work and I would certainly not meet my grant conditions. I might get some lab work done. I would sleep a lot, but poorly. No voyages. No running. Severe depression. Possibly permanent damage to my relationships and friendships. My health would deteriorate on a number of fronts. I would barely write.
It almost goes without saying that my hyperalgesia would get a lot worse.
Now, here’s the deal: my GP, my main pain specialist and my gastrointestinal specialist want me to take painkillers regularly. They’re high dose codeine, and they have knock on effects that aren’t great for Crohnies, but it’s more important to shut up my spine and try to get the hyperalgesia under control. My other pain specialist (the guy who is covering while my main specialist is on maternity leave) wants me to not take painkillers. He wants me to be mindful, and expect to be in pain. I don’t hate the guy, but that attitude pisses me off. I’m okay with a very low level of occasional, unavoidable pain. In fact, if it’s very occasional, I’m even fine with higher levels of pain.
I’m not okay with visceral hyperalgesia that dramatically reduces my quality of life.
I only have one life. I have things I want to do with it. I’m not okay with fading into the background because of chronic pain.
This is a bummer of a post, but there’s an upside: I recently did a stint in hospital for an IV ketamine infusion. It wasn’t a magic bullet. It hasn’t made my pain disappear. I’m still needing painkillers, which really upset me at first, until I ran the numbers.
I am needing a lot less of them. Which is super nice, and something to focus on whenever I cramp up and get upset about it. Now, whether that’s because of the ketamine, or because I am pushing myself to tough it out (ketamine doctor is the one that doesn’t want me on codeine), I don’t know. It does feel like I’m getting less cramping. I am simultaneously disappointed and excited, which is an interesting mix of feelings, let me tell you.
Now, from the above list, I have choices as regards a management plan. I could look at all the things where pain interferes heavily with my activities, and I could decide only to take painkillers (i) when I’m doing those things and/or (ii) when I’m doing those things and my pain is quite bad. I could do that. It would reduce my opiate intake – win.
I have hyperalgesia. It might make that worse. So here’s the other angle.
I could take painkillers when the cramping starts – trying to fine tune a dose that works, which is very difficult, because codeine is packaged with paracetamol (acetaminophen for you U.S. folks). I can’t just take a tiny amount, see if it works, and then take a bit more if it doesn’t. I’m stuck with whatever dose I take for the next 4-6 hours – which can be catastrophic if I’ve badly misjudged my pain levels. This would mean I’m in a lot less pain overall, and it would be much better for the hyperalgesia, but it would make the side effects of the painkillers worse, and it would increase the risk of addiction or dependency (although, I do tell my GP exactly how much I take and when I take them, and she continues to tell me I’m low risk, and has promised to tell me when that situation changes. I trust her to do so). It might also increase the risk of tolerance, and making the painkillers less effective – which I really don’t want. It’s the main reason I’ve tried so many other non-opiate strategies. I don’t want to be dependent, chemically, and I also don’t want the stuff that works to actually stop working.
So this, my friends, is what I refer to as “painkiller math.” It’s a weird dance, and it’s difficult, and no matter what I choose, someone’s going to judge me for it.
Halved my dose.
That’s pretty cool.