pain management
Allow me to crash out for a second.
Since roughly a month, Iām experiencing a flareup in my spondyloarthritis (Ankylosing Spondylitis or Bechterewās diseaseā¦). This is a type of arthritis that primarily affects the spine and usually some other joints.
I first noticed it in the base of my right thumb that was painful and a bit stiff (this has now mostly resolved) and plantar fasciitis (the fascia in your foot arch, basically; my body loves attacking in this area for some reason, as I used to have frequent Achilles tendonitis as a teen). This first caused unexpected pain in some moments of walking and also resulted in issues using my phone, using a controller, and every day stuff that needs thumb mobility and pressure on the thumb.
I also noticed general aches especially after resting and following some exercise. One example was having weirdly stiff elbows and shoulders after indoor cycling, which I hadnāt had in quite a while after treatment worked.
This was followed by sacroiliitis (inflammation where hip and spine meet im the lower back) first on the right and now on both sides, and sharp pain in the upper thoracic spine (between the shoulder blades). That means while walking, sitting, and lying down, I have pain in the whole area of my lower back and hips, and as I breathe and my upper spine moves, I am in pain as well. Every time I breathe in, thereās a knife in my back. As nerves are affected too, I have shooting pains down my legs and into my shoulders and neck. My right leg occasionally randomly collapses away from under me due to this, but I havenāt fallen yet.
Unfortunately, everything gets worse with rest (both sitting and lying down) but obviously, I canāt exercise 24/7. Itās generally difficult to hit the sweet spot each day where exercise helps and doesnāt further aggravate everything. I recently had such a great workout (30 minutes treadmill, 20 minutes cycling, 20 mins mix of yoga and pilates) that made me feel as if I had just gotten a dose of heavy painkillers, but that relief only lasted for about two hours max. I still need to sleep, study, and do an office job.
I tried to go back to a low dose of Prednisone and it obviously helps a bit, but I donāt wanna be on it - I was on 80mg last year, tapered down to 50mg, and then couldnāt go lower for months until new treatment worked. I had the whole experience of side effects, even medically induced Cushingās Disease and issues with my blood sugar. When I recently tried between 2mg-4mg, I was immediately back with the constant thirst and peeing (= blood sugar issues). It was so disrupting I had to stop.
Itās sad seeing everything fall apart again. I see it in the way more stuff is lying around in the apartment than usual. Chores take longer or get procrastinated on. I am low energy. I barely go to the gym anymore and prefer to exercise at home. I heat up a heating pad for my back like 4 times a day, itās not more than that only because Iām often too lazy and stubborn to do it more often.
I try so hard not to take painkillers. You arenāt supposed to take ibuprofen with Crohnās disease, but I have to sometimes. But when I max out my limit for it, I add paracetamol, which works less well but helps at least some. Iām especially careful with that so I donāt harm my liver. So it all becomes this big monster of trying to get the energy to exercise and making time for it in my day, then holding myself over with heating pads and stretches and distractions, before turning to painkillers as a last resort, and alternating/mixing them. I almost treat it like a luxury good, something to indulge in, because of weird shaming around it.
I remember this absolutely disrespectful interview with a doctor I read this year in which he was clutching his pearls about people taking ibuprofen and that itās so dangerous and poisonous and that people should just stop. He talked about it as if people just take these for fun over a papercut. I wish I could shit on his doormat. Peak example of a healthy and non-menstruating person with zero empathy.
So every couple days, I allow myself to take them, and my inner monologue is really like āOh well, I deserve this. Iām splurging on it. Itās okay for today, I held out long enough. But it is kind of extra. Maybe I could have skipped this one too. Is it even bad enough?ā And then they kick in and I truly realize how bad it was. You get used to it after a while, your brain kind of tuning out some of it, but itās still this constant static sound in the background that ruins everything.
Realistically, if Iām being honest, I would need painkillers every morning and evening every single day. And if weāre being even more real, they would not be the freely available pills, but the highly controlled patches. But that also opens up a whole lot of other possible issues.
It sucks! It fucking sucks. I throw myself into my studies, into my volunteer work, into lengthy blog posts and anything like that so there is finally some focus away from my body. If Iām in a flow state, I donāt have to be in here, I donāt have to witness this.
I love slowly getting tired on the sofa and falling asleep while doing something else (like watching something) and I love being busy with something (like studying late) until Iām dead tired and then crashing into bed, falling asleep quickly. Because the alternative is going to bed in a timely manner and lying awake, being hyperaware of everything that hurts, and it starts hurting more and more as time goes on, and Iām lying there wondering how I can possibly manage the next 30 years like this, wishing it was over.
I donāt have to endure this forever, of course. This flareup just needs to pass, or I need to switch medications, or I finally try and get a proper pain management going for these phases, and then everything goes back to normal. But in these moments, none of that matters. I just want it to be over. Every morning I get teleported back into this hurtful mess, and everything that would help causes more issues. It makes me angry and close to tears all the time, and makes me worry if Iāve developed antibodies to infliximab. My injection this week changed nothing.
Next week will be super busy with traveling and attending events, and Iām tired of portioning out the relief. Iāll take what I need to make it, and I hope the rheumatology appointment the week after will be helpful.
If anyone takes anything away from this, it should be the obvious fact that not all pain can be successfully treated with lifestyle changes and people arenāt necessarily taking āthe easy way outā with painkillers.
And if you look at people and think you know what causes their pain, you should consider that you never know what came first - the pain or the other things. With pain like that, itās no wonder many people choose to avoid exercise, eat to feel happy, or self-medicate with drugs that are easier to get than a fent patch; and if people regularly get stuck on months of Prednisone, that does not help. My usually ~58kg self ballooned up to 75kg on ~6 months of Prednisone. After a year off, Iām 10kg down, 7 more to go.
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