Were any symptoms on Axial Spondyloarthritis surprising?
Did you experience any unexpected symptoms when you were diagnosed with AxSpa?
Are you wondering if anyone else experienced these symptoms?
Are you unsure if these symptoms are connected with AxSpa?
Share with the community below!
Jaw pain, tingling and numbness in the arms. Subluxation of joints. Both my knee caps, and 2nd, 3rd and 4th toes on both feet, are subluxed due to tendons stiffening. That breathing problems can be associated with AS, I went undiagnosed for 25yr, as well as fused SI and rib joints, I was diagnosed with pulmonary fibrosis due to years of uncontrolled inflammation. I worked as a trauma nurse, and my back pains were always blamed on my career.
I am sorry you went so long without a diagnosis. Diagnosis for AS can be a long journey, and as you discovered, it's too easy for doctors to blame something that can explain it away, like your job. How are you doing now? Warmly, Kathy (Team member) thanks, I’m not too bad. My mobility is limited due to all my peripheral joints also being affected, but I try to stay active. I have an allotment I manage, and use my exercise bike twice weekly, as well as daily stretches. I did have one A&E Dr who in 1999, said he saw issues with my spine on the xray, that would cause me issues. I was taken aback and never asked what he seen. However the AS expert who works with Nass, said it was almost certainly sacroilitis. This was before biologics were an option, so I’m pleased I didn’t realise then, or I may have felt I’d have to give up a career I loved. I retired at 52 when I had a severe stroke due to an adrenal crisis, which is when I discovered I also had severe adrenal insufficiency. Still miss my career 8yrs on, but I’m a positive person, who refuses to give in. I have a very supportive hubby, who has researched my illnesses, and knows what’s needed. So I’m luckier than many. Hope you keep ok too 🤗
GI symptoms, especially right before a flare, foot numbness, tingling and pain, thigh pain
I see. Your GI symptoms act as a heads-up that a flare may be coming. How do you usually manage once the flare comes? -Latoya (Team Member) rest, OTC pain relievers, heat, prednisone. Use a walker until symptoms get better
Inflamed lump in metatarsal area leading to fixed hammer toe
That sounds painful. Foot problems are not uncommon with AS. You aren't alone. How are you doing now? Warmly, kathy (Team member)
Incontinence, cataracts, jaw pain
Thank you for sharing. Yes, there are some strange and surprising symptoms that can come along with AxSpA. How are you coping with them? Warmly, Kathy (Team member) funny thing about this is that steroids treat the bladder and jaw inflammation but cause the cataracts! It's really not funny though, is it? I'm coping though, thank you for asking!
