Today was a rough day. A humble reminder that we are not in remission, and still have a journey to go through. Although it is a new year, it is not quite a new me.
I felt it as soon as I woke up this morning at 5 am. The stiff muscles in my back and neck screamed as I moved my body to run to the washroom. Even my run was a stiff hobble at best because I was so incredibly sore. No position I put myself in would bring any relief either. I was sore sitting on the toilet (already in pain from that experience), sore lying in bed, and sore standing. I couldn’t win.
Joint pain is well documented in patients with ulcerative colitis. It’s noted that about 30% of patients with UC have joint pain and inflammation as well. Research suggests that the link may be due to our genes.
There are two types of joint pain UC patients can get. Arthralgia is a pain in the joints without redness, swelling, or inflammation. Arthritis is joint pain with the inflammation, but in UC patients arthritis does work a little differently. For the most part, arthritis in UC patients will not cause long term joint damage, as the joint will swell up and inflame, but will go back to their normal state once you are out of a flare. In other words, joint pain is usually a sign of your flare up and once that is under control, so is the pain.
They say that the level of pain is usually associated with the level of inflammation you are experiencing. If that is the case, today my bowels must be hella inflamed because I feel like I ran a 500 km death race.
I’ll try my best to paint you a picture of what this feels like.
It starts off with a flu like sore. That whole body ache you get, where even just the clothes on your skin feels constricting and heavy. When I move my neck I can feel all my muscles along my back tighten and scream in revolt. My shoulders and shoulder blades feel like they slept on concrete blocks for the last 10 hours. My legs, knees, and elbows feel bruised and tender to the touch. Sometimes I get this shock of pain in these areas, where it just randomly spasms. It only lasts a couple minutes, but it completely throws you off. Even my abs hurt, like I just went to workout, which is a lie. Its been over a week now. It hurts to do anything. To bend down, to reach up, to sit, to stand, to lie down, to eat, to laugh. It all hurts.
I feel clumsy and delicate, especially first thing in the morning. I move slow to allow my muscles time, as if sudden movements will result in me breaking a bone or throwing out something. I’m definitely more grumpy in the morning. I’m trying so hard to just grit my teeth and move on with my day. Fight through the pain, but it’s so hard sometimes. And I don’t look sore or hurt or achey, but I feel it. I know I don’t have visible inflammation, but I feel the aches. I feel my bones crick and crack, my back spasm, and my neck stiffen.
I cry sometimes. It’s defeating to feel your body revolt against you and know there isn’t anything you can do about it. This morning as I was pushing toothpaste out of the tube, my fingers around the tube began to spasm and I couldn’t let my grip go. It was like my fingers were stuck and stretching them out was excruciating. I got light headed and my ears rang out in pain. I seem to be extra touchy when my fingers start to give out on me. I once cried because my fingers could not bend enough to be able to turn the lamp switch off. It literally took adjusting my body positioning and 9 or 10 tries before we finally got that lamp off. How am I supposed to be a strong independent woman when I can’t shut off lamps or reach for toilet paper without my back spasming?
Then there are days where I can’t seem to hold on to anything. I drop things or I become shaky. My fine motor movements just seem to go out the window. I’m like an oversized toddler at this point, fumbling around understanding how things should be, but my body seems to refuse to allow it to work that way. I say up, my body says down.
Somedays the pain goes away as the day goes on, but there are days like today where it just lingers all day. Where it hurts, but you learn to tolerate the pain. Where you convince yourself that it is just a dull pain you can handle and tomorrow it will go away. My stomach has been a bitch today. It’s becoming increasingly hard to tell the difference between ulcer pain and period cramps. My uterus is not happy so therefore my colon is not happy, and vice versa. I know my colon isn’t happy today because it keeps singing the song of its people. The howls…. even my dogs have woken up from their naps, startled and confused my what sounds come from me.
It’s okay guys, I’m confused too.
But my point is, joint pain is sometimes part of the package with UC. So listen to your body. There are so many remedies out there to try, just find what works for you. I stick to hot showers, peppermint or menthol oil, heating packs, and a solid cry from time to time. My boyfriend used to massage my back when it would get really bad and I would literally not even be able to sit because it was so stiff. I haven’t had it that bad in awhile, but now that we are on Prednisone for a little while longer, I’m sure I’ll be asking for massages and crying into our carpet soon again.
Happy New Years friends! I am off to drown my sorrows in hot tea and books.