What does a flare look like for you?

Hello Rebecca,

I was only officially diagnosed about 7 years ago, but looking back at my personal history I really began with noticeable symptoms way back (over 60 years ago!) when I was a teen. But it was always just attributed by doctors to generic osteoarthritis or, later, to poor bone matrix (osteomalacia) caused by primary hypercalciuria - which is also true. Could they both also be manifestations of the same thing underlying autoimmune disorder?

Problems are also complicated by the fact that there are no rheumatologists in my area (we're very lacking of a lot of specialists around here). My GPs have tried their best, but clearly lacked the expertise in rare disorders. I have had an endocrinologist for several years (who has recently retired) who rather successfully treated the bone loss issues (with bisphosphonates and Forteo). The diagnosis was made, however, by a pain specialist, based on radiographic evidence.

It's much too late to do anything significant to"fix" the degenerative problems. They are far too extensive. Now it's mostly just pain management and coping strategies. As mentioned previously, none of the procedures (injections and nerve ablations) have helped... at all.

Looking back (way back, like 50+ years ago), had I even an inkling of what was going on, I should have been much more aggressive in seeking specialized medical help rather than just accepting the generic osteoarthritis diagnosis and all the pain meds prescribed that only somewhat masked the disease. But who knew? (Not even the doctors!)

Thanks for sharing your journey, - I can relate to your "looking back" comment. Should I have known what was happening to my body way back then (am over 50 now), I would have been much more proactive in my health and treatment. I would have prevented several surgeries, severe pain, and a lot less debility than I currently have.

I agree, who knew? From research, it was in the mid-70s (??) that this disease was researched in more depth, though there is mention quite a bit earlier (from Egypt to 1500s to late 1800s and so on).

As you mentioned, I too am in the stage of AS where coping with the pain from this disease and management are at the core of my treatment. Though using biologics, I am trying to slow down progression. I am sorry to hear that injections aren't helping. Recently had one in my hip and the cortisone caused a terrible 3-4 week migraine. Not sure I want to use that treatment again. I may need to undergo surgery again.

Is there a way you can travel a bit to see a specialist for your consultation and then use telemed for follow-up visits? I use this method for my neurosurgeon 3 hours away. I do hope you can manage to ease the pain from this flare. I find flares have been coming one after another - I may need to adjust my treatment ... again. Sending you thoughts of less pain and better days ahead. Thanks for being the community. Rebecca (Team member)

I can certainly relate. It's difficult to manage this monster of a chronic illness. And, King's monsters ... well you know - evil and ruthless are only a few ways to describe it. Thanks for sharing your POV. Wishing you better health - Rebecca (team member)

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That is so very frustrating. Have you discussed how bad this escalates with your healthcare provider?
I'm including a link to an article you may find helpful: https://axialspondyloarthritis.net/living/flare-tips.
Wishing you all the best, Doreen (Team Member)

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Thanks so much for the feedback!
We're so glad the article resonated with you.
Hopefully you can find a bit of comfort knowing you are not alone.
Sending positive thoughts, Doreen (Team Member)