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What does a flare look like for you?

Hello. I am going through the process of testing for a possible diagnosis. I had previously been diagnosed with RA due to blood test results but have never really had small joint problems. For the past 3 years or so I have been having events that pretty much disable me from doing most activities. I will start to get a little pain and stiffness in my lower back and then suddenly, overnight, I will wake up and barely be able to move. It sometimes takes 10 minutes to get out of bed. I can't put on socks or wear anything but shoes that slip on. Getting up and sitting down are very difficult. The last "event" I had lasted a little over a week and I was unable to stand up straight without support and/or walk standing up straight. It was the worst. I had been attributing these back events to other reasons, since I was told 10 years ago that based on my blood test results that I didn't have ankylosing spondylitis, but am now wondering if they might be a flare. Anyone else have similar experiences?

  1. most of time Iam in so much pain I can not sleep most nights

    1. I’m so sorry that you’re struggling with pain and getting sleep and thank you for sharing so honestly. Have you reached out to your doctor or specialist about your pain levels and how it is impacting your sleep?

      I had a couple of pretty sleepless years because of my AxSpa, and it was really tough. Some of our community members have certainly shared your experience, and you might be interested in this article about navigating nighttime pain:

      I hope you are able to get some relief and get a good night’s sleep soon. Keep us updated with how you’re getting on! Joy (Team Member)

  2. I feel the same as you. When I notice that I'm in a flare I make sure to take really good care of myself and eat those good dark antioxidants that help me feel better. I use OTC lidocaine rub, lidocaine patches, muscle relaxers and meditation along with whatever light exercise I can do. I garden, so some days are just sitting and enjoying the view and others have lifting and raking. I do what I can when I can.

    1. Oh yes! Having an integrative medical management approach is vital for managing a chronic illness such as spondylarthritis. Here's a link to an important article for those interested. It makes all the difference between enduring this disease and walking side by side in managing it. Gardening and being out in nature is incredibly beneficial for many. It alleviates stress and promotes overall well-being. Plus, gardening allows for gentle movement and stretching, which can be especially useful for maintaining flexibility and reducing stiffness. Thanks for sharing. We appreciate you chiming in. Warmly - Rebecca (team member)

  3. wow, same as stated here !

    1. Is it possible to have flares 24/7? Kinda serious!

      1. - I believe it's possible. I had a 4-5 year flare that resulted in diagnosis. It was a challenging time, and I empathize with anyone going through something similar. I've also read many accounts in the community where extended flares are making them miserable. Are you having a long flare currently? I hope you have support and are being treated. Should it continue I would check in with your treating physician / rheumy to see if there's an adjustment to make to your treatment plan. They may be able to suggest changes that can help alleviate the pain and debilitation associated with spondyloarthritis symptoms. Hang in there - we understand. Warmly - Rebecca (team member)

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