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What words do you use to describe AxSpA?

Recently our community advocate, Jessica, wrote this article describing the struggle that is finding the words to describe pain from AxSpA. Pain is difficult to describe: what words do you use to describe how you feel while living with AxSpA? Have those words changed over time?

  1. Unpredictable!

    1. A sense of throbbing, cracking and uncomfort; I have a feeling that I need to stretch the muscles in order to get relief, but relief doesn’t come.

      1. AxSpA flare emotional symptoms
        Man, this is one of the worst flare ups I've ever had.
        Hot flashes & waves of pain moved up from lumbar to cervical. All hands set condition one! Red alert! All hands man your relief stations, all morning Rx's taken.

        1. Hi , I'm sorry you're experiencing such a difficult flare right now. How you describe the pain you're feeling, it feels like it consumes the whole body. I do hope how you're managing this flare can offer relief. In addition to medicine, what else may help in moments like this? -Matt (Team Member)

      2. For me, AxSpA is a bunch of continuous hot pokers sticking into my pelvis, lower back, and sites of enthesitis.

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