In honor of the annual awareness day, World IBD Day, I’m sharing five invisible aspects of my life with ulcerative colitis. This year’s theme is “Making the invisible visible,” so I thought I’d launch this series by sharing my top invisible extraintestinal manifestation: joint pain.
Joint Pain: An Invisible Extraintestinal Manifestation
One thing that a stranger wouldn’t know about me just by looking at me is that I deal with autoimmune joint pain. This is called an extraintestinal manifestation because it’s an IBD-related symptom that doesn’t involve my intestines.
Two years ago, I noticed that my right index finger was puffy, swollen, and discolored. It was a little bit tender, too.
My First Joint Pain “Diagnosis”
In April 2017, I went to my general doctor because, at the time, I had no idea it was related to my IBD.
The doctor took a brief look at it, and said, “Yup, you hit it on the wall when you were sleeping.”
I was shocked. I know I’m not a doctor, but I understand enough about my body to know that hitting it on something wouldn’t cause it to look or feel like this!
However, I let it go because I figured it was nothing too serious, and it wasn’t preventing me from doing anything.
Fast forward two years later, and it’s gotten worse and has spread to my pinky finger. I feel random aches in other joints now, too, including my elbows, shoulders, and knees.
Getting My Arthritis Diagnosis
It’s May 2019 as I’m writing this, and I’m working with another doctor now. (He suppressed a laugh when I told him what the doctor had said two years ago).
In the last few months, I’ve done X-rays and blood work and everything came back normal.
Until…
I did an additional blood test a few weeks ago; it screens for something called HLA B27. In short, it’s an antigen that, if positive, is oftentimes associated with a reactive arthritis (AKA an autoimmune, IBD-related arthritis called enteropathic arthritis.
The doctor’s office sent me a letter with my results: It reads, “Your results show positive. We will review this next visit.”
It’s interesting how having an autoimmune disease or two rewires your brain. I’m not sad, bitter, or fearful about this news. I’m actually relieved. I smiled when I read the letter. It means after two years, we’re finally getting somewhere.
The point of all this is that IBD is much more than an intestinal disease. It’s an invisible illness with sneaky, stealthy symptoms that no one would notice unless I decide to share them.
And I choose to share my story because
AWARENESS > FUNDING > RESEARCH > CURES
Hi there, this is very informative. Do you have any remedies or treatments you can share for the finger swelling specifically?
Hi Daniel! Thank you, I’m so glad this was helpful! My rheumatologist prescribed a medicated cream called Diclofenac Sodium Topical Gel, and it’s significantly reduces my arthritis pain. It might be worth a chat with your doctor. Thanks for reaching out and I hope you’re doing well!
Hello my fingers have been having the same issues, but my swelling comes and goes. At first I thought it was the cold weather as it happened to my fingers and my toes if my hands/ feet got cold. But now it’s almost summer and it’s started happening to a few fingers again. It’s just swelling in the first half of the finger that’s connected to the knuckle but it is quite sore as well. What should I do?
Sorry to hear you’re dealing with this too! My swelling comes and goes as well. For me, it seems to be random and isn’t tied to specific seasons, although the cold does bring about more pain for me. I’d encourage you to get a rheumatologist if you don’t have one yet. They’ll be able to give you medical advice and maybe prescribe a medication for the swelling. I know some people take infusion medications or use topical creams. I hope you can find relief soon!
This was super helpful. I myself am suffering from similar symptoms and the doctors have told me that its an insect bite! Obviously I know that its not. This article has helped me gain a much deeper understanding of my physical symptoms.
Thank you!
Hi there! Thank you for your comment! I’m so glad to hear you found this post helpful. Good for you for going with your gut! We patients know our body best! I hope you get a care plan in place and your joints feel better ?
Hi there! The picture you posted looks exactly like my index finger on my left hand. Thank you for sharing your story. Were you diagnosed with IBD prior to your symptoms related to your finger swelling? Thank you!
Hi Alethia, it’s great to hear from you! I’m so glad this post was helpful 🙂 Yes, I had been diagnosed with my IBD before my finger started swelling. However, at the time, the thought didn’t even cross my mind that the two could be related. Also, it didn’t help that my primary care doctor at the time didn’t seem very invested in my situation and simply discounted my swollen finger, saying I “hit it against the wall when I was sleeping.” Craziness! I hope that you have a great care team that can help you get an official diagnosis and a way to manage it. Stay safe and well!
this is SO helpful, im dealing with the same issue, fingers only though. I definitely have gut issues (years of eating disorders). have you found that certain movements help when your fingers are like this or to not move them? it’s hard to know!
So glad you found this helpful, Amelia! Though I’m sorry you deal with it too. Yeah, when my fingers are like this, it feels better to not move them. Even typing hurts, and cold air makes it worse!
Thanks Amelia, I’m glad this was helpful! Sorry to hear you’re dealing with the same issues. I’ve found that, for me, what helps the pain most is keeping my fingers warm! Some movements (like typing or gripping things tightly) can bring about some pain especially when the arthritis is flaring. But keeping them warm has made the biggest difference for me! I have a personal heater at my desk that helps with this.
I wear a finger splint at night, which reduces the pain and also protects it from knocks. I had no idea what was causing the pain.
This is a great idea!