what does my pain feel like?
Unfortunately, it seems like my medication (for Bechterew's disease and Crohn's disease) is no longer fully working. You can even go back and read it, seeing that in almost every monthly summary post on this blog has a mention of a flare up. It all seems like one little outlier, even to me, until you see that pattern emerge every month and become worse. Now October is my worst month yet, and my body is tearing itself apart again.
I got an appointment at my rheumatologist soon, but until then, I get by with resting, pain meds, and Prednisone. Currently unfortunately off of that temporarily because I need to give my body a chance to develop an inflammatory response to the vaccine I got on Monday, so not only am I in an autoimmune illness flareup, I am also processing something that is supposed to make my immune system react. Great times. Next one is on the 12th, so I will be riding that rodeo a second time soon.
It's kind of easy to simply talk about the symptoms vaguely (like joint pain), and I have done that a couple times on the blog. It's harder to describe the kinds of pain itself, or at least, harder to make people understand it and find equivalents that they can remember or empathize with.
Many people go through life currently pain-free, or if there is pain, it is temporary or bearable. Once it resolves, they tend to forget how bad it was - from simply breaking a leg to surgery recovery or birth. Even just general infections are easy to move on from. When other people are down with the flu, they (hopefully) stay home until they feel better and more or less accept nothing else can be done until they're better. This is many people's only reference to being really sick; a little downtime for a week or two, with a predictable end.
But with chronically ill people, you just never know when it will be better again (and how much), it's all random. Still, life has to continue somehow. You can't just drop everything every time. Imagine you got the flu every 3 weeks for a week: What employment, education or social life would work under that aspect? You'd have to work through it somehow, even if it's a reduced version of what you usually do. Unfortunately, that means people see me drop (almost) nothing during a bad flare up (meaning: I still work, study, volunteer, blog etc.) and still try to show up everywhere, and it understandably doesn't register under how much strain that happens and that I am probably unusable the next day. When I try hard one day despite currently having a bad time, I take my health and energy from the future days to make that work.
So how can I best describe the pain and experience more deeply?
I'll take some of my recent days as an example.
On the day the recent bout really kicked off, I developed severe pain on the way to the office. I was fine prior, but it simply started then. I sat in the tram, and could suddenly feel everything burning. Bones, muscles, skin. Felt like there were razor blades embedded in my flesh. No comfortable position, even just sitting and breathing became exhausting.
I couldn't even hold my phone up anymore because I was suddenly very weak. Not just exhausted, or sore muscles as if it's the next day after a hard training, but instead the same feeling as if you could not hold up a plank or curl a dumbbell anymore. My arm muscles were depleted with just less than a minute of holding something very light up, in a way that's usually not a problem when I feel well. I could watch my hand and arm slowly sink to my lap.
There are also these bouts of feeling as if I was extremely thirsty, but I am not, and drinking doesn't make this feeling go away, it's just very very similar, and only for a few seconds at a time; a strong yearning while everything inside me seems to squeeze together because of the pain and inflammation.
I experience the most pain in my limbs and ribs, and especially in the major joints (wrists, ankles, knees etc.). It's similar to the sort of pain in their extremities and general malaise people feel when coming down with an infection. The pain spread all over the body is constant burning for about 6-7 on the scale, with varying focus areas that are a good 8 or 9 of either pulsating or stabbing pain. With focus areas, I mean things my body just seems to focus on especially hard that day or entire time of the flare up; could be an inflamed neck, or the base joint of my thumb, or my sacroiliac joints.
Inflamed neck is really annoying, because you really start to notice how many times you need to turn your head every day (crossing the street especially!), and mine is stiff when that happens, plus my head is slightly tilted and I cannot fully straighten it. Due to swelling, it also feels as if there is something inbetween the vertebrae that I need to massage or stretch away, an overwhelming urge to get it out, to crack the spine there. Anything to make that discomfort go away, that feeling that it's not properly fitting on top of each other. That just makes it worse, so I really need to be disciplined and just keep it still and wait for it to pass. The last time I had it almost made me lose my mind as any and all positions put enough pressure on it (pillow or gravity from being upright) that caused immense amount of pain and I could barely function at a desk. Glad that's over.
Sacroiliac joint pain tends to happen only on one side at a time for me, alternating sides. It's pain between your spine and hips, the very low area down your back where they meet, and unfortunately there is no relief when it hurts aside from meds; sitting, standing, lying down all hurt equally, a strong searing pain that cuts through anything and that I can't distract myself from. It can radiate down my thighs and into the buttocks or up the back. Sometimes when it's bad and I walk, the pain shoots down the leg when I put weight on it and it just gives out, which is a bit scary, but I haven't fallen yet. When I move after being inactive for a while, especially getting up from anything like a chair or sofa, you can usually hear it crack loudly, even during healthy times.
On top of all that, there is also a (I assume partly psychosomatic) wandering type of pain. For example, one minute the center of my right wrist is pulsating with pain, then it fades away. Then 20 seconds later a hand-sized patch of skin on my thigh hurts, then 10 minutes later all the middle joints of my toes hurt, before it moves on to my shoulder and my left pinky finger soon after. This isn't a fixed routine or anything... time, order and place is just completely random, is what I am trying to illustrate. These really happen like that. I can just flinch from my finger randomly feeling like it's being stabbed. You can also sometimes see my fingers twitch, especially the thumb, when my wrist is acting up, or see muscles contract involuntarily under the skin in my palm (the flexor pollicis brevis especially, if you are curious).
If my intestines trouble me, it's the typical Crohn's disease spot, the ileocecal valve, where the small and large intestine meet. When it's actively inflamed, it feels like a huge wound, as if a big area there is scratched open with a fork, and it's a pulsating sort of pain. I have the urge to hold my hand there from the outside, and shield it away and double over as if I was stabbed. I may not be able to even stand straight. When it's not currently inflamed, it might still hurt occasionally because the area is a bit scarred and not as stretchy and wide as healthy tissue, so if contents of the intestine pass the area, it's very tight and the shape or amount may be a bit much. It helps when I massage it.
At the same time, I feel really really exhausted and tired, as if I ran a new personal best, and I am pretty much spent when coming home from the office. Also very hungry because my body seems to do something really exhausting and needs energy, even when I'm actually just lying around somewhere. Temperature control is also all over the place, but often too warm. I re-develop eczema on some known spots, or develop new ones. I am suddenly reactive to specific food, especially histamine-rich foods, so I have to avoid or reduce them again. Old allergies come back. I am itchy on my entire body, and randomly develop itchy welts during the day that just come and go all over the place as they please. Some spots itch so badly, I scratch until I bleed or there is a huge patch of the first layer of skin missing. I get acid reflux from literally anything. When my meds work, not only am I not in pain, but also all of these symptoms no longer appear and I can eat what I want and am not itchy.
During a flare up, all of that is happening at the same time, constantly, sometimes more in the foreground or the background depending if I can currently focus on something else or not. With some episodes, like right now, it is just constant background discomfort I can somewhat work through. Kinda feels like sitting in a vat of acid, but it's not strong enough to eat my flesh, just enough to hurt. I'm sometimes distracted by something else suddenly hurting. I feel like my output is diminished, but I can still do stuff. I just do it a little worse, or slower. Right now as I am typing this, my lower arms and the top of my feet hurt the most, aside from the overall pain.
Other times, the pain and inflammation is so bad I can't think, or form words, or find the correct words. I forget what I was trying to say. Saying a single sentence can take a long time, and I may not even finish it. I'm just existing and writhing somewhere while lying down and waiting for it to be over or for meds to kick in. That's when I am completely dependent on my wife and can't do anything for myself. If there is an absolutely catastrophic flareup, the inflammation can get so bad that I physically cannot move; for example, in 2024, my hands and shoulders were so inflamed that I could neither really grab/hold something, nor raise my arms enough to get dressed by myself.
Overall, mornings are initially bad because I am stiff and the pain starts up massively while slowly waking up. It gets better during the day, and then past 8pm, I slowly worsen again. Stress, illness, and other factors affect this, of course. But that may be the reason why I am fine at 1pm, and then have to cancel for something later that day. Oh, and for the weekly injections: I'd describe them about 3x as bad as vaccine shots. It doesn't get any easier, and every time I have to force myself because I know the pain that's coming. Sometimes I get lucky and it barely hurts, but lately it's been nothing but intense pain for every injection.
What are some signs that I have a bad time?
I am much more focused on sitting down, and I can't stand for long. If we are on the go, I am always on the lookout for seating, I have to take frequent breaks sitting down, and I ask how long until the next seating opportunity arrives. I start massaging my lower back, stretch from left to right while sitting, or start folding over and stretching by touching my toes with my hands (when I start doing that, it's usually game over soon and I need to go home). When you see me look at my hands and I quickly open and close them or massage them, obviously my hands hurt.
If at home, I lie down every other hour or so. I sometimes lie down on the office floor (yes). When I sit somewhere, it looks more like I passed out there, like a potato sack. I'm more moody, even less patient, and meaner, more sensitive to sounds and touch. I am checked out of conversations and just stare emptily. If I can, I retreat to a soft surface and nap. I'm constantly tired. I take more baths than usual because the heat helps. I'm worse with timely replies, I take longer for tasks, I put off more exhausting and time-consuming tasks.
If any of this sounds familiar to you, it's time to talk to a doctor. Not everyone experiences this, it's not normal or healthy. When my meds work, I don't have any of this and feel like a healthy person. If you focus on a specific body part right now (maybe during a body scan, meditation, awareness exercises etc.), does it hurt or do you feel nothing? Try it with your hands, your feet.
For the longest time, I was convinced it was normal that the second I focused on any body part, it felt painful and burning. I thought that happened because focusing on it made the nerves hyperaware or something, feeling pain that wasn't there; imagining it, basically. The truth is that my brain was just getting really used to that pain all the time and shoved it to the back of my mind so I could function, which meant it only became really noticeable in a flare up, or when I focused on how I felt, or needed to actually be present in my body. When my meds work and I focus on any body part, I feel absolutely nothing. When I am in a flare up, meditation and body scans are a complete torture. If you feel discomfort and pain when you let yourself feel your body, you need to seek help.
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