What do you feel is the biggest misconception about axSpa?
AxSpa is an invisible illness, which means others never really get the full picture of what’s actually happening. What do you feel is the biggest misconception about axSpa?
Oh, you look healthy
Yes! It really is a challenge having an invisible illness. How are you coping? Warmly, Kathy (Team member)
People don't understand the constant (but invisible) pain.
It feels like a knife and needles are constantly poking into my upper/lower spine, SI joints and so on. I got plantar fascitis R ankle just after July 4th of 2022. I had to incorporate more exercises and stretches for that. I tried Humira from like August '22 to end of December 2023. It did absolutely nothing for me. Just started it again May '25 at the urging of my rheumy. I was taking Celecoxib 200mg qd and Sulfasalazine. Stopped the Celecoxib and decreased the Sulfa because my uACR level was high one time last year in January of 2024. That no one caught until like October of 2024. Now I also take Lisinopril 1.25mg qd or every other day. I pee more now also. I also have diabetes since 9/2010 as well.
It sounds like you've been through so much. How are you coping? One of the frustrating things is all the complications and other conditions that can come with this disease. We are glad you are part of this community. Warmly, Kathy (Team member).
I do normal things when I can. However, I feel every joint afterwards. My left thumb and left forearm burn like fire. The weather causes me to have a flare-up and yup I end up in bed. My sisters worry and try to assist me. Yet Noone understands the pain we have. "Arthritis? Oh I have that" It's not that bad", physician told me. I told her
she had no idea what we go through.
I believe the pain scale 1-10 should be created differently because we're on a different level. We tolerate a higher level pain. When I'm asked about my pain...Normal is like a 4-5 on the scale.
Yup no one knows our daily pain and inflammation.I think you are speaking for many of our community members here! You may be interested in this article, written by one of our health leaders, about the pain scale. Does it resonate with you? All the best, Kathy (Team member)
