-I'm truly sorry to hear that you're feeling this way. Ankylosing spondylitis (AS) is a type of inflammatory arthritis that primarily affects the spine, causing pain, stiffness, and inflammation. It can also affect other joints and various organs. Education about the condition might help bridge the gap in understanding, and support from loved ones can make a significant difference. Here are a few links from this site that may help you and your family understand this disease a little better.
https://axialspondyloarthritis.net/basics
https://axialspondyloarthritis.net/symptoms
I can truly relate to the pain you are describing. Enthesitis played a major role in moving me toward diagnosis. My arm and leg tendons, as well as in the spine, felt as if they were on fire most of the time. It kept me bedbound for a while. Hardly able to walk, I wobbled into a rheumatologist's office for help. Have you found a rheumy who specializes in inflammatory diseases? After trials on a few different medications, I found the right one for me. Although the anti-TNF biologics didn't help, I found a JAK inhibitor that worked quickly to calm the pain and inflammation from axial spondyloarthritis. This may be a first step. What do you think - find a rheumatologist to help? I will circle back around to see if others have joined in the conversation. Wishing you relief and answers. Rebecca (community moderator)